History

Wednesday, December 26, 2007 0:13 AM CST

Mele Kalikimaka……that’s Hawaiian for Merry Christmas.

Yes, we made it to the beautiful, sunny beaches of Maui. At times in the past few weeks it seemed that it was up in the air. But God is so good. We are here and so happy to be soaking up the sun and just laughing for the sheer joy of it.

Earlier today as I sat on the beach looking at the beauty around me, listening to my praise music I became so overwhelmed by it all. I laid my head done and just cried and thank my precious God for this dream come true. To be sitting right there, against all the odds.

While I was praying the song “Spoken For” by Mercy Me was playing. If you haven’t heard it you are missing a blessing. In the chorus it says, to hear You say, “This one’s mine” my heart is spoken for. Those words just opened the flood gates for me. Because as a mother I know how much I love Zach and want to do for him. It just overwhelmed me to be sitting right there looking at the ocean, something I wasn’t sure I would ever be well enough to do again. I was so full of thankfulness for my Father’s love for me. He wanted me and my boys to be here just as bad or more so as I did.

To me there are no better words to hear than, “This one’s mine.” Is your heart spoken for? If you’re fighting battles every day and being worn down lay that burden down. We are all guilty of doing this. Just stop for a moment and lay it down. Remember, you are His.

Quote of the day:

“This one’s mine.”
~God

Verse:

Jesus looked at them and said, “With man this is impossible, but not with God; all things are possible with God.”
Mark 10:27

Sunday, December 23, 2007 11:56 PM CST

I have dreamed about this for the last three years. I am twelve hours away from being on a plane headed for the sandy beaches of Maui! The closer it gets the more excited I get. Way back in July when we took the leap of faith that I would be well enough to make this dream come true we booked our flight and condo. Now all those months ago it still felt like a dream and I think we kind of tip toed around hoping that things continued to be fairly smooth.

Fast forward to the last week. The mean old devil has been trying to mess things up all over the place. But I stood firm in my belief that we would be going. As you all know I got my blood transfusion last Friday. Because of the time crunch and so many things piling up the blood was pushed through pretty fast. Seems that my body isn’t real pleased about it so my blood pressure has been very high. They have put me on dieretic that is suppose to help. So far there is no change. But my doctor said that it could take a week for my body to acclimate to this new blood and for my pressure to come down. The bad thing about this new medicine is that it flushes fluids out. So that means I need to drink, drink, drink. But at the same time they told me to be careful not to drink too much. Okay.

So you see, that old devil has been working overtime. I think he needs to back off…take a break. I would like to ask each of you to please remember us tomorrow. We will be flying out at 11:45 in the morning and arrive in Maui at 1:30 in the morning the next day (that’s Nashville time). So it will be a long, hard day. Please pray for calmness in my body, strength, and grace. I am so looking forward to this special time with my beautiful boys. I have joked with them that I want to learn how to surf on a baby wave. I’ll let you know how that goes…ha ha. Today is all we have and I am going to celebrate it. I wish you all a very merry Christmas and a most wonderful new year. God bless you.

Quote of the day:

“Faith is unutterable trust in God, trust which never dreams that He will not stand by us.”

— Oswald Chambers

Verse:

For by grace are ye saved through faith; and that not of yourselves: it is the gift of God.
Ephesians 2:8

****I will be updating while I am in Maui. Watch for pictures and leave me a note on my guestbook. Thanks a bunch!

Tuesday, December 18, 2007 11:08 AM CST

I am so thankful. I have been blessed with the most wonderful life and God has given me family and friends that have showered me with unbelievable love. So on this day I want to start by saying what a tremendous blessing you have all been and continue to be in my life.

While some “half empty glass” people would like to quickly remind me of all the medical issues in my life, I choose to be a “half full” gal. Sure there are trying days and not so fun things I have to go through. But oh the blessings that God pours into my life. I will continue to say “Bring the Rain” because at some point that beautiful rainbow will appear, our promise.

As you can tell my heart is overflowing. Before I catch you up with all the medical stuff I want to share all the special things that have been going on.

On December 12th Bennie and I celebrated our 21st anniversary. I will try to give you the condensed version. This man, the man of my dreams, my hero, took me to dinner. We love to go to PF Changs. On the way there he said that when we got our fortune cookie that night we should add to the end of our fortune “in Hawaii”. We are crazy like that, adding different things just to be fun. Of course, I was game for that since we are on the countdown to our trip. When our server brought the cookies she also brought some sparkling wine and a pretty little brownie cake. I thought to myself how sweet Bennie let her know it was our anniversary. Little did I know. When I opened my fortune cookie I didn’t see my fortune at first. It was all on one side. So I opened that piece and saw pink letters that read, “Stephanie, will you marry me, again?” and I thought in Hawaii. I looked up at him. While I was reading it he had placed the ring box in front of me. I just looked at him with tears in my eyes (I have tears now also). He told me I better look in the box. Inside the box was the most beautiful engagement ring. Of course, you know I said yes. We both had tears in our eyes by now. Oh who am I kidding I was out right crying. This man loves me just like I always prayed as a girl to find. Even after the hardest of times in the past 6 years he is still my rock, still there, loving me like there is no tomorrow. So you see, I am blessed. All the other not so great stuff just falls away. Now like I said this is the condensed version of all that took place. For those of you that would like to hear the rest of how he planned this just give me a call. It's beautiful.

Bennie has already (before that night) talked to a minister there in Maui that has agreed to remarry us on New Years Day at sunset on the beach with Zach as Bennie’s best man. My parents are so torn up about this that they bought me the most gorgeous beach wedding dress (very simple, but elegant), beautiful headband, and veil. For the boys they got them black on black striped dress shirts. They already have black slacks to wear and we will be barefoot. Of course, we will take many, many pictures.

Okay on the medical front, I know I have to update you so you know how to pray more specifically. I had my stent changed out last Friday. I dreaded having to go through the being put to sleep and the adjustment time of the new stent. Things went okay. My urologist told Bennie that the old stent was very corroded (it always seems to be though) and that he had a hard time getting the same size stent back in place. I slept for most of the next 24 to 36 hours. Today is the first day that I can tell that me and the new one are adjusting to each other. What a praise on that one!

You know I have been going every Monday to get my b12 injections. Yesterday was my 4th one. Prior to the injection they drew labs to see how things looked. Well, I was all excited that yesterday was my last scheduled appointment at Vanderbilt for this year and I was smiling and laughing. Then the labs told a different story. My hemoglobin a month ago (and for most of the last year) was low at 9. Yesterday it was 7.3! I bet you guessed already….I have to go back in Wednesday or Thursday to be typed and crossed to get a transfusion on Friday. Here I have been beating myself up over not having more energy, feeling so tired, and so on. This explains all the things that have been going on like my blood pressure being so high, shortness of breath, racing heartbeat, nausea, and so on. I need a top off…ha ha. My poor heart is working overtime. This will probably be something that I will deal with for the rest of my life. But I am looking forward to getting the blood on Friday to be ready for our trip on Monday.

I have let the fabulous Dr. Church know about all of this stuff so that he is on top of things. After the first of the year I will call to set up appointments with him and the urologist he recommended. I am planning on waiting until the end of March to have surgery.

But enough about all that stuff. Life is sweet and goes by so fast. Enjoy this day that we are given. Look for the smallest of blessings that just sneak up on you. I am so richly blessed and thankful.

By the way, we are going to take Bennie’s laptop with us. So I will be able to update. Yea!!!!
You know what I would love in the next few weeks? Flood me with notes on my guest book, emails, send me your Christmas pictures. Those are the best gifts, the sweetest ones. I love to put pictures on my frig, so help me add some new faces or just updated ones. God bless you and your families.

Quote of the day:

“Jesus is the reason for the season.”

Verse:

In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.
Matthew 5:16

Wednesday, December 5, 2007 10:22 PM CST

Praying, hoping, and dreaming.

Almost 5 years down the road and in His time my prayer, hope, and dream of taking an actual bath happened. Yes, while we were in Cleveland I mentioned something about being able to take a bath again once I healed from my next surgery if they do decide to do the auto transplant. Dr. Church stopped me and said that there was no reason I shouldn’t be able to do that now as long as I cover my open wound with a waterproof bandage. He then said that he would check with one of the urologist there. The word came in and it was a go. Let me tell you, taking a bath after 5 years ranks right up there with being able to eat. To some those two things are so small. Something they never have to pray, hope, and wish for. They just do it every day, no thought. But what blessings they are to me. To me I was given an early Christmas present. Silly as that sounds. I am so thankful.

Okay so the other up dates…lets see…I’ve had my second b12 on Monday. I can’t tell a difference yet. Hopefully by the next one I will. Oh, and I need some powerful praying on Friday. I am scheduled to have this nasty, painful stent changed out. I’m not looking forward to the procedure because they use general anesthesia and I seem to have such a tough time waking up from it. If it was just any Friday it wouldn’t be a big deal. I would just end up spending most of the day at Vandy and then come home to sleep some more. But this Friday my baby boy has a jv and varsity game against one of their rivals. It will be tough district games. So I am praying that I can get in there, things go unbelievably smooth, and I head straight to the school for Zach’s jv game at about 4:00. Then the next day is my girlfriend, Renee’s, benefit. I have to be there for that. So, I need some prayer for sure. Between all of our prayers and my determination we’re there.

One more thing, we are on the countdown for Maui! Just a few weeks away. I actually have gotten the suitcases out and have packed our swimsuits…ha ha. Can you tell I’m excited? Bennie and I have talked and we are going to take his laptop so hopefully I will be able to post while we are there. That is the plan.

I want to thank you all for being such wonderful blessings in my life. The power of prayer in our lives is evident in even the smallest things, like just being able to take a simple bath. God is so good. I am so thankful He loves us so much. If you feel moved please leave me a note on my guest book or even an email. Like I’ve told you before they are sweet rays of “sunshine” in my day.

Quote of the day:

“To look for the many little blessings is a choice we can all make.”
~Luci Swindoll

Verse:

Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God’s will for you who belong to Christ Jesus.
1 Thessalonians 5:16-18

Tuesday, November 27, 2007 9:16 AM CST

The update you’ve all been waiting for…….

It’s been a crazy whirlwind since Bennie and I flew back in from Cleveland last Tuesday. We got back just in time to make a beeline to Zach’s basketball game. Since then we have gone to spend a few days with my parents to celebrate Thanksgiving, then to Bennie’s family to celebrate, had basketball tournament games for two days an hour and a half from here (not getting home and to bed till 2 in the morning!), celebrated Zach’s big 16th birthday, had a little virus, and I went for my first B12 injection. That’s a busy schedule in the last week. So anyway here’s the scoop on the Cleveland trip.

My appointment with Dr. Church went very well. We have a game plan. He said that if nothing changes I can wait until the first of the year to have surgery. I am hoping to wait until basketball season is over. Right now the plan is to remove at least part of the mesh though it may all have to come out, replace it with new mesh, try to free up more of the small bowel from the adhesions, autotransplant of my right kidney, repair of ventral hernia, and close the open wound hopefully without having to do a skin/muscle flap. He said that I would be his only surgery for that day. From what I have research on the internet the autotransplant takes about 7 hours to do by itself. So it sounds like it’s going to be a long day.

While I was there Dr. Church decided to cut away the granulate tissue around my open wound. Yeah, everyone that has heard about that has the same reaction I am sure you have just had…ohh no. It wasn’t so bad though and everyone was so sweet to me. The worse part was when his nurse had to apply pressure multiple times to stop the bleeding. It made me feel pretty nauseous because she was pushing on the mesh which is all that separates my small bowel right there from the outside world. Kind of freaky, I know.

Dr. Church looked at my labs for over the last year. We discussed me being chronicly anemic. He wanted my B12 level checked. He decided that I need to have a B12 injection once a week for 4 weeks and then once a month indefinitely. He also wants me to have a transfusion to get ready for surgery because my hemoglobin is pretty low.

The good thing about having the autotransplant of my right kidney is that I shouldn’t have to have a stent after the surgery. He said that the kidney should work just fine down beside my bladder. If not, then it would shrivel up and die. In any case I would be without a stent. Otherwise I will always have to have a stent. Even with the stent there would be no guarantee that the kidney wouldn’t become too damaged and die anyway. So other than it being yet another surgery and a tough one at that, is a positive step.

Another good thing from the appointment is that Dr. Church isn’t so sure that the tumor on my left side is actually a tumor. He thinks it could be muscle and scarring. I told him that I haven’t ever seemed to have trouble on that side, other than some occasional hydronuephrosis with my left kidney. All my trouble is on my right side where the definite desmoids are.

Overall, the trip to Cleveland was well worth it. Before we flew up there I had been struggling a little bit with having another surgery and one that would require me to be in the hospital a week or two so far from home. I have gotten spoiled to being close to home so that all of you could come visit me in the hospital. But after going up there and talking with Dr. Church I knew in my heart that is where God wants me to be. So it will just encourage me to get well quicker to get back home.

Oh, and I was going to tell you more about my sweet friend, Elodie. She has been so wonderful and helpful to me. I have grown to truly care about her. She has been my connection to Dr. Church. When I knew that we would be heading back up to Cleveland to see Dr. Church again I was so excited that I would get to see her. But she said that she would be returning to Paris before my appointment. I was disappointed that I would not be able to see her (maybe ever again). As soon as I was taken back to a room for my appointment I mentioned Elodie. Guess what? She was still there! She popped into my room and I know I most have smiled from ear to ear. She stayed and talked to us for a long time and while Dr. Church removed my granulated tissue she was right there squeezing my shoulder and asking if I was okay.

Elodie surprised me again when she gave me her bracelet she was wearing. She said that she wanted to give me something to remember her by. I told her she couldn’t give me her bracelet. But she insisted. It is absolutely beautiful and I will always cherish it. Every time I look at it I think about her. She also invited Bennie and I to come to Paris to visit her some day. She said that she would help us find somewhere to stay and show us around. Maybe one day. She and I have promised to stay in touch.

Okay, so the other news is that we now have a 16 year old! Tomorrow afternoon I will be taking him to get his driver’s license. I just can’t believe my baby will be driving himself to school on Thursday. Where did all the time go? I have been teasing him every so often about if he will miss me too much and still need me to drive him to school. Of course his answer every time is no. We both just laugh.

For now that is a big chunk of news. I hope you all are doing well and getting into the Christmas spirit. I want to tell you all thank you once again for your continued prayer. Our prayers are being answered. Sometimes not in our time or exactly as we think or ask. But always, always in His perfect time and way. Lets continue to be banded in prayer.

Please click over to my guest book for a minute and leave me a note, favorite verse or quote, or just a simple hello. Those notes let me know that you are still walking the journey here on the website. More importantly they are little pieces of “sunshine” to me, treasures of gold.

Quote of the day:

“God’s designs regarding you, and His methods of bringing about these designs, are infinitely wise.”
~ Madame Guyon

Verse:

And we know that all things work together for the good to them that love God, to them who are called according to his purpose.
Romans 8:28

Tuesday, November 20, 2007 12:56 AM CST

Hey everybody. I have found a computer here in Cleveland to give a short update. My appointment went very well with Dr. Church. It just confirmed once again God's plan for me to be here. There is no question in my mind that this and any future surgery will be done here. I'm not saying my group of doctors are not good at Vanderbilt. I just realize that Dr. Church has more experience dealing with FAP patients. I am thankful for everything my doctors have done for me at Vanderbilt and they will be able to help with follow up.

I know this is just a teaser post. But I just have a short time to use this computer. I will post more either later tonight after Zach's game or in the morning.

My list of what I am thankful for today....

Once again I have to say Bennie. Different reason today, but still the same in a way. I am thankful for his love and his determination to take me wherever, see whoever to help me have a better quality of life. I love this man.

God's plan. Because He loves me and is the lover and leader of my heart.

Dr. Church, for his sincere care and experience.

Elodie, his genetic research assistant, for her friendship and genuine care and concern. I will have to catch you up on this remarkable woman.

Coming back home today!

The promise of bright tomorrows and Hawaii approaching.

I hope you all are having a wonderful day and that you take a moment to see some of the "SUNSHINE" in your day. It's there.

Quote of the day:

"Just believe"
~ Stephanie

Verse:

Trust ye in the Lord forever,for the Lord, Jehovah, is everlasting strength.
Isaiah 26:4

Monday, November 19, 2007 3:15 PM CST

Yes, it’s time for an update. In the morning Bennie and I have to be at the airport between 4:30 and 5:00. We will arrive in Cleveland by 9:00. I am scheduled to see Dr. Church at 10:00. Our flight back to Nashville leaves at 4:30, arriving back in Nashville at 5:07 (gain an hour coming back). From there we will make a beeline to Zach’s basketball game. We will get there by 6:00, just in time for both varsity games (girls then boys). The sad thing for me though is that Zach has a jv game before that (the first one this season). I tried everything I could to get back for that. It just wasn’t possible. It hurts this mama’s heart. But it will be okay.

You know I will be letting you all know either tomorrow night or first thing Wednesday morning all about my appointment with Dr. Church. I am actually going to try to post everyday (this is a holiday week so we will see). My posts for the rest of this week (besides the update about my appointment) are to share what I am so thankful for. I thought that would be very fitting since it is thanksgiving week. It’s important every day to remember what we are thankful for. This week just kind of brings it more to the forefront.

My first list for the week of things I am so thankful for.

This list wouldn’t be complete without saying how thankful I am for God’s love, grace, and belief in me. That is such a blessing and comfort every single day. Every day I think, He believes in me. Call me crazy but to be tested and continue to turn to Him just shows me that He believes in me.

My boys! God gave me the best boys in this world. Bennie is the other half of me. He’s my love. God knew how wonderful he would be for me. My Zach, my little angel. He is my laughter and smile. I have been blessed to enjoy so many special times with this baby. Plus the added bonus, he reminds me in different ways of my brother, Dusty. So that is a special gift.

My parents, Diva and Big Daddy. No matter what is going on in this world I know that they are only a phone call away. We have grown up together and what a blessing. Just like Bennie, they have been there through some very tough, hard decision making times. No matter what I know I am loved by them and I love them right back.

I know these next ones may seem kind of silly to some. But even when I am hurting bad I will say how thankful I am for these next ones. I am thankful for every day (almost a year) that I have been able to eat, not had a stinky, painful drain hanging from my hip and abdomen, not spent a night in the hospital for myself, and felt like I have been able to live life. Very thankful.

Last, but certainly not least, I am so very thankful for every one of you out there praying, loving, supporting, calling, sending cards, emails, leaving notes on my guest book, and so on. What a wonderful, loving blessing you all are to me. Thank you for sharing this journey with me. I am blessed beyond belief and so thankful.

So keep checking for my next update. Remember tomorrow night or Wednesday morning. Plus, my next thankful list. Hey, how about you leave some of what you are thankful for on my guest book? That would be awesome!

Quote of the day:

“To look for the many little blessings is a choice we can all make.”
~ Luci Swindoll

Verse:

Be thankful and praise the Lord as you enter his temple. The Lord is good! His love and faithfulness will last forever.
Psalm 100:4-5

Sunday, November 11, 2007 9:13 PM CST

I just wanted to post real quick to let you know that I will be having a ct scan in the morning. Dr. Church wants this scan to be UPS or FedEx to him asap. I will also have to notify my urologist so he can look at the films. I am calling Dr. Church’s assistant to see how quickly we can schedule to see him. We are hoping for a week from this Tuesday. I’m not really nervous about more surgery. I just need to spend some time getting my mind, body, and spirit ready for what will be required. Seeing Dr. Church to discuss what he sees in my ct, getting a plan of attack, and spending time praying/meditating will get me where I need to be. Right now all I want to do is get to Maui.

On a very bright note, Zach’s basketball season starts on Tuesday. Plus, he will be turning 16 the Saturday after thanksgiving. You know what that means…yes, he will be getting the long awaited driver’s license. He is beyond excited about that. Me? Not so sure about it.

Quote of the day:

“I learned that life is not just a destination but a journey. While the expedition can be long and arduous, it can be full of beauty and pleasure as well.”

— Wayne Holmes

Verse:

Delight thyself also in the Lord; and He shall give thee the desires of thine heart.
Psalm 37:4

Monday, November 5, 2007 8:12 PM CST

It was supposed to be such a simple, no big deal appointment. The simple, no big deal part was what I told Bennie when he asked if I needed him to go with me. After all I was only going to talk to this surgeon to get more information about the surgery that we weren’t even sure when or where I was going to have. I had already done all my usual research so I had a pretty good picture of the typical surgery and patient. Well, right there you have to stop…me typical…my surgeries typical. Typical is just not a word that can be put in the same sentence as my name.

When the doctor first started talking to us and examining me he said that my hernias weren’t too bad, not bad enough at this point to warrant risking surgery on me. He thought the plastic surgeon should just take care of the open wound issue. That was until he examined me further and also spoke with my “Captain” surgeon. So for a few wonderful minutes we were relived that it seemed like the surgery was going to be so simple. After he got back from talking to “Cappy” everything changed.

He looked at the open wound some more, did some probing with my favorite object, the good ole long handle q-tip, and then lowered the boom. The easy surgery…gone. My open wound is caused by a couple of issues. The first is that the skin in this area is so paper thin that there isn’t enough tissue left to heal. Second the mesh that is holding my insides in is infected. You would think the plan would be to get that out, right? After all infection isn’t a good thing. Not such a good plan for me, remember I’m not typical. If he were to remove the mesh and replace it with more mesh he said that it would just get infected. Plus, there are so many other issues; risk of infection from surgery, question of where to get skin and muscle graft (he doesn’t know if it’s possible on me), what material to replace mesh with, risk of triggering growth in desmoids (trauma from surgery does that), and that’s just the top of the list. At this point it is safer for me to continue living with this open wound and infected mesh. Doesn’t seem quite right does it?

I did well through the whole appointment, never a tear. I listened and asked some questions. He spent a lot of time with us and asked me to give him a few days to talk the other doctors and do some research and then give him a call or email. So now we wait for answers. But in the meantime, we live and enjoy the days we have. Because none of us are promised tomorrow. For some of us it’s just a little more real. At some point I realize this disease or complications from it may take my life. I am okay with this. The thing is that for the time that God blesses me with on this Earth I want to live, give, and love to the fullest for His glory. Because in the end that is what the journey is all about.

Quote of the day:

“Praising God is one of the highest and purest acts of religion. In prayer we act like men; in praise we act like angels.”

— Thomas Watson

Verses:

Because your love is better than life, my lips will glorify you. I will praise you as long as I live, and in your name I will lift up my hands.
Psalm 63:3-4

Friday, November 2, 2007 0:03 AM CDT

My wonderful, sweet buddy, #15, sent out an email to our Sunday school class asking for them to pray for another family that needs special prayer. Then she ended her email with a request for them to remember me in their prayers because I have some tough decisions to make. I am so blessed to have so many friends like her. You all have been so wonderful about remembering to pray for my family and me. But you can only pray as well as I share, right? I have always struggled with being able to honestly answer the question, “How are you?”. My every day, easy answer is either, “I’m fine.” or “I’m okay.” I think if I say it enough maybe it will be true one day. Plus, I just don’t want to sound like I am complaining. Because I do know that I am having “good days” as Bennie likes to call them. They’re just bad “good days”, that’s what I call them. Every day I am thankful that I am allowed to eat, that I don’t have a stinky drain tube hanging from my abdomen, and that I haven’t spent a night in the hospital for myself this year. But every day I live with so much pain, an open wound that just won’t heal, eating and drinking issues, more surgeries looming in the too near future, and so on. I told Bennie the other night that I was so tired. Of course, he said that I should go to bed. That’s what anyone would say, right? I tried to explain to him that my mind and body weren’t sleepy tired. My body is just tired, tired of the pain, tired of the energy it takes to function and look “so good”, just tired of feeling so bad. So, you see, I do need some extra prayer. Yes, I do have decisions to make about when and where I am going to have my surgeries, here or Cleveland. Then the added bonus of Bennie finding out today that he will have to have surgery on his knee for the injury from the fall. No matter what though, I am trusting in my God. He will give me strength for the day.

Quote of the day:

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”
~ Mother Teresa

Verse:
When I am afraid, I put my trust in you. O God, I praise your word. I trust in God, so why should I be afraid? What can mere mortals do to me?
Psalm 56:3-4

****New photos!!!****

Monday, October 29, 2007 8:35 AM CDT

Today this post has nothing to do about me. I am using this post to wish Bennie the happiest birthday and hope that you will join me. If you have a chance would you please send him an email (zmanco@comcast.net) or call his cell phone (615-243-1212) to wish him a happy birthday. That would tickle him to pieces. Thank you so much for doing that. It will put the biggest smile on his face and he deserves it because he has been so wonderful to me.

Quote of the day:

“Find something to be thankful for even on those rainy days.”
~ Stephanie

Verse:

Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God’s will for you who belong to Christ Jesus.
1 Thessalonians 5:16-18

Monday, October 29, 2007 8:35 AM CDT

Thursday, October 25, 2007 0:56 AM CDT

Hey you guys. Well, my Monday appointment ended up taking most of my afternoon. My appointment was at 11:00 and I didn’t leave until almost 3:00. Wow, huh. My pcp got another urine sample to check me out. Then after a lengthy conversation in which I got a little emotional she decided it would be wise to give me some iv fluids. It was evident that I was dehydrated. Even after an entire bag I didn’t have to go to the restroom. That kind of surprised her. So she decided to draw labs to check my kidney function and so on. My labs don’t look too good. My hemoglobin is taking a dive again, down to 9.3. I never seem to make it quite back to the normal range anyway. I am scheduled for a ct in a couple of weeks and to see my oncologist. My pcp added another week’s worth of antibiotics for my kidney infection and I am to come back in at the end of it to do another urine sample. Tomorrow I have to call my urologist to see about getting this stent changed out. He probably won’t do it before I finish my round of antibiotics though. Neither one of us is thrilled about having to change it out so soon.
Oh, and I almost forgot, my pcp didn’t like the look of the drainage coming out of my open wound so she cultured it. Now we are waiting to see if anything grows. That can take a week.

These are issues that I need prayer about; pain in my right flank, pain in right side lower ribcage down to hip and across the bottom of my abdomen, being dehydrated because it hurts to drink because of kidney infection, difficulty sleeping, exhaustion due to lack of sleep and anemia, open wounds on abdomen for almost a year, and decisions about upcoming surgeries. That’s a pretty good rundown list.

Okay so to kind of change the subject…with all of this always on my mind, sometimes it can get heavy you know. Usually it gets so heavy when we, without really realizing it, pick it up, throw it on our backs, and try to carry on the journey. Yeah, with all these decisions to make I think I picked up some of the load. Maybe not quite all of it. But enough that I knew I had to lay it down. Do you know one of the ways I do that? The past two days I have spent a lot of time enjoying my praise and worship music. I mean really enjoying it. Yeah, if you could have been a fly on the wall you probably would have had a laugh or two. But I promise you would have been worshipping with me. I sit here in my office and play my music through the computer speakers. I sing and dance in my chair like there is no tomorrow. I talk to the Lord and raise my hands, yeah, I do. The Lord and I have had a good time. The decisions and all the other stuff are all still there. But the load, well, you know, I laid it down.

Have you picked up a load without realizing it? At first the weight of it might not seem too bad. But before long it will have you humped over. So lay that sucker down. Turn on your favorite praise and worship music, do your own little special time with Jesus, lay that load down and walk on down the road. It will be a better day.

Please don’t forget to go to my guest book. Take a moment to leave me a note. Put a little sunshine in my day…that’s what your notes are to me. Thank you and I hope you all are having a fabulous week.

Quote of the day:

“Praising God is one of the highest and purest acts of religion. In prayer we act like men; in praise we act like angels.”

— Thomas Watson

Verse:

From the rising of the sun unto the going down of the same the Lord’s name is to be praised.
Psalm 113:3

Sunday, October 21, 2007 8:30 PM CDT

Just a little longer, please!

That is the prayer on my heart. Each day I say this. Each day things seem to get a little tougher…once again. You know it’s when the waters have been calm and I feel the beginning of choppy waters that I dig my heels in just a little.
I told Bennie it made me think of a time when I was a little girl. Back when I was around 7 I was a Brownie and Diva was our troop leader. One of the Brownie outings was to go roller skating. Anyone that knows me very well knows that I was born with skates on my feet. I think this was one of the first times I had ever actually skated at a rink. Most of the time back then I skated on my carport to music on my little record player. Well, I was in tall cotton skating at a real skating rink. As it got close to time for us to leave I noticed that the other girls were one by one getting off to go put their shoes on. Even way back then I was thinking and praying….just a little longer. I started skating closer and closer to the center of the rink almost under those wonderful speakers that played the music…pretending that I didn’t know it was time to leave, wishing for a little more time. Years later I can still see that in my mind so clearly. I told Bennie, see the little girl is still there…just a little longer, please.

So to catch you up on things. I have a busy week of doctors appointments and decisions to be made. Please join me in prayer that the Lord will give me strength, courage, and wisdom in making these decisions. Also, that He will be with all of my doctors to give them wisdom, compassion, and understanding. I know our prayers will be answered because we are an army of God loving, God believing people.

I will post again later tomorrow afternoon to let you know how my first appointment went this week. Thank you all for waiting so patiently for me to post tonight. The past few weeks have been extremely hard. I am blessed every day by all of you that pray for me and my family. And you know even at the end of these tough days I am thankful that my Lord has chosen me to walk this journey because I can think of no higher praise than His belief that I am stronger than even I believe. So I know that I am blessed.

As always I will end this post with my quote and verse of the day. After that you will find the lyrics to “Bring The Rain” by Mercy Me. Whenever I post lyrics it is because they truly speak to me, have helped me in some way. It is a beautiful song I hope you will read to the end. Then after that please, click over to my guest book and leave me a short note. Your sweet words are treasures to me. Also, I will have new pictures hopefully in the next day or two.

Quote of the day:

“Prayer is an indispensable part of our relationship with Jesus Christ.”
~ Laurel Oke Logan

Verse:

Rejoicing in hope; patient in tribulation; continuing instant in prayer.
Romans 12:12

MERCYME LYRICS

"Bring The Rain"

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

Tuesday, October 9, 2007 1:18 AM CDT

This post is to wish my mother, Diva, the very happiest birthday ever!

I love you with all my heart. Thank you for being my mother and best friend. I am so proud of the woman you are and of all the accomplishments you have achieved in your life. You have taught me how important it is to have a dream, faith, and determination. I love you Mother!

HAPPY BIRTHDAY DIVA!!!!!!!!

Quote of the day:

“To look for the many little blessings is a choice we can all make.”
~ Luci Swindoll

Verse:

Be thankful and praise the Lord as you enter his temple. The Lord is good! His love and faithfulness will last forever.
Psalm 100:4-5

Monday, October 8, 2007 11:15 AM CDT

First of all, I want to thank all of you that have been calling, sending emails, praying, and so on. As Diva told you Bennie took a very bad fall on Saturday while Diva and I were gone to the women’s retreat. The update on Bennie for now is that he has a broken left wrist, dislocated middle finger on right hand, torn ligaments and tendons in his right knee, bruising and scrapes, a couple of cuts on his head, and he has a few other concerns. On Thursday we have an appointment with an orthopedic surgeon to discuss what needs to be done. It is possible that he will have to have surgery on his knee, wrist and finger. I am praying that won’t be necessary. He is feeling a little better today. So that is good. Please continue to pray for him.

An update on my upcoming surgeries….well, I have to get Bennie better first. I do have an appointment next Monday with the surgeon that will repair my hernias. In the meantime my plastic surgeon is trying to coordinate all three doctors to do the surgeries at one time. I had hoped to have the surgery within the next 2 weeks. But that doesn’t look likely now that Bennie has been hurt. Just saying prayers, saying prayers.

Now I have to give a shout out…..tomorrow is Diva’s, also known as Mama Julia, birthday! So lets wish her a very special, happy birthday. I love you so much mother!

Please continue to leave notes on my guest book. They really do brighten my day and put a huge smile on my face.

Quote of the day:

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”
~ Helen Keller

Verse:

Blessed is the man that trusteth in the Lord, and whose hope the Lord is.
Jeremiah 17:7

Monday, October 1, 2007 10:55 PM CDT

I am sitting here struggling for words. The words that keep running through my head are….I am having bad, good days. For those of you that don’t quite understand what I said I’ll explain. Bennie and I have called these days and months since December the “good days”. They are good days because I can eat whenever I want to, no longer have a PICC line and drain hanging from my body, and so on. The reason why I am saying they are bad good days is because the pain, the nausea, open wounds, and never ending stuff just sometimes gets the best of me. I have struggled with this since my last post and in the past. Every time things get tough like this I beat myself up over not being stronger. But tonight I keep thinking about the verse that tells us in our weakness He is made strong. So I admit to all of you that these are bad good days. I will be going to see my plastic surgeon on Thursday and we will be scheduling a triple surgery – he will do exploratory on my abdomen because of the open wounds that just won’t heal, another dr. will be repairing a ventral hernia and possibly my hiatal hernia, and then my urologist will go ahead and change out my stent. I am to the point now that I have done every thing that I could possibly do to help my abdomen heal, I just want to go ahead with the surgery to get this behind me. It has been 10 months since my last surgery, 10 months of taking care of these open wounds. Every day I do all the things to make life seem normal and to “look” fine. But right now I am just having a hard time.

I guess I should catch you up on some of this stuff. Dr. Church’s assistant has been keeping up with me sporadically since my surgery in December. She asked me to send my latest 2 ct scans to Dr. Church so he could see how things looked. Do you know that within about 30 minutes of him getting the cds he called. I know this because the assistant called to let me know he was looking at them. So when he called he let me know that the tumors appear to be stable meaning there doesn’t seem to be any growth. That is good but doesn’t mean that they aren’t doing damage. Several of my small bowel loops are entangled in a tumor making part of the small bowel look matted and putting pressure on it. My right kidney is as he put it “rather large”. He said that if it came down to it we might need to consider doing an auto transplant of that kidney. Basically that is removing my kidney and trying to place it below the tumor next to my bladder. He said that he had only done that on 5 patients. After doing some research I am pretty sure that I don’t want to have this surgery at all. Not a good thing. So it looks like I will have to get my big girl panties, shoes and attitude on to handle going back to a larger stent. Hopefully that will help my kidney to be able to function better and by doing that help me get rid of some of this pain.

Sometimes the pain and every day living with this just gets the best of me. I will admit that the thought of having to go through yet another surgery in some ways gives me hope that I will feel better. But also scares me because in the last few years I have had so many complications with and after surgery. I just want to blink forward to Christmas Eve and be on the beach in Maui. Please, please my wish is to be well, to enjoy that with my boys. We have waiting and hoped to be able to make back there one day. So I need to get my good days back again.

On a very positive note, Bennie had his colonoscopy last week. He had one polyp. The pathology report is back and the polyp was benign. So he doesn’t have to go through that again for 5 years. Thank you Lord for that wonderful news. Another good thing, Renee is doing well. Her PICC line was removed last week. She is eating good and feeling pretty good. Her and her family are planning on taking a trip to Gatlinburg to have some fun. When she gets back she will be making appointments to discuss chemo.

This coming weekend is our ladies retreat. I am so excited about going because Diva is going with me. We are going to be roommates. How much fun. I have been trying to decide what to give her for her birthday and decided what better present than a weekend away together. I am so looking forward to this weekend. This will be such good medicine.

As I end this post tonight I want to ask you to please remember me in your prayers and please if you have an extra minute go to my guest book and leave me a note. Your notes are the sunshine in my day, pieces of encouragement that let me know you have been to my journal and that we are walking this journey together.

Quote of the day:

“Our Creator never intended that we should shoulder a load of suffering ourselves. That’s the whole purpose of spiritual community.”
~ Linda Bartlett

Verse:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”
2 Corinthians 12:9

Friday, September 14, 2007 10:54 PM CDT

Hey everybody!

First of all, Renee is home….YEA! Her and her boys are staying at her mother’s house for now. Monday she will be going to have a ct scan in hopes of having the drain tube removed and find out when she will be able to eat again. Please keep her in your prayers. In the next week or two she will be meeting with my oncologist to discuss chemo options. So keep her in your prayers for that also as she tries to grasp what she should do.

I was supposed to take Renee on Monday but things have kind of gotten turned around. Another friend will take her because my oncologist decided that he wanted me to move up my upper scope sooner. I had the ct last Wednesday. The official report isn’t ready yet but as far as he could tell the tumors seem to be stable (yea). I have more hydronephrosis in my right kidney. Not good since I just had the stent changed a month ago. His concern is that the tumors although they don’t appear to have grown any, while that is a great thing, it doesn’t mean that they haven’t caused trouble with my small bowel and right ureter. Because even if they don’t grow they can still put pressure on the organs they are close to. That’s what desmoids are good at…strangling.
So Bennie will take me on Monday since I will have conscious sedation for the procedure. Hopefully things will look okay. Then we will go from there.

Oh, and on the open wound, I saw my plastic surgeon last week also. He used the ole dreaded long handle q tip to bloody the area up and then used silver nitrate to scar it. He wants to see me the end up October. He said that if it doesn’t look any better he’ll probably schedule me for exploratory surgery. Yuck. This has been going on so long…the open wounds. I just go along like it’s not a big deal to have to do all that stuff. But when I take time to think about it being almost a year since surgery, now that’s a long time to deal with open places on your body.

But on a positive note, God has given me the opportunity to meet several people in the last week or two that have been through similar situations. I am enjoying getting to know and share with these people. It is a true blessing. Also I want to thank each of you again for your continued prayer. Many times in the last week I have held on to the assurance that prayers were being sent up. Every day they are being answered. Thank you

Quote of the day:

“We must learn to wait. There is grace supplied to the one who waits.”
~ Mrs. Charles E. Cowman

Verse:

I trust in You, O Lord, I say, “You are my God.” My times are in Your Hand.
Psalm 31:14-15

Thursday, September 6, 2007 7:12 AM CDT

Good morning.

Please continue to pray for Renee and her family. The pathology report may be ready today or tomorrow. Receiving that final news will be extremely hard. We need to continue to pray for her strength, determination, and will.

If you could please do me another favor it would mean so much to me. In the coming days, like the past week or two, I will probably be busy helping Renee in any way I can, my favor is to ask each of you to please be my partner in post. Any of you that speak to me or happen to see me please post your thoughts, whatever is on your heart, news I give you, and so. I will post as often as I am able to. But if you would also help me by leaving notes on my guest book for those of you that haven’t seen me or talked to me it would mean so much to me.

Just knowing that you are all here steadily praying is such a blessing to my heart.

Quote of the day:

“Make today count.”
~ Stephanie

Verse:

We always pray that God will show you everything he wants you to do and that you may have all the wisdom and understanding that his spirit gives.
Colossians 1:9

Tuesday, September 4, 2007 11:41 PM CDT

I find it very hard to sit here trying to put words together to adequately share the past 6 days with you. I do ask that you please continue to remember my friend, her two sons, and her family. She ended up having emergency surgery in the wee hours of the morning last Friday. The surgery was to remove a blockage due to diverticulitis. The captain of my team was doing her surgery. She was in good hands.

After surgery he came to let us know how things went. Never in my life did I expect the words he said. Renee had stage 4 colon cancer. The cancer appeared to have also spread to her right ovary and she also had some lesions on her small bowel. He removed the left section of her colon, right ovary, and some of the lesions. It was all sent for a path report, which should be ready tomorrow, or Thursday. Of course, she and her family are all still in shock, trying to make decisions. My first thoughts after hearing the news were of disbelief and heartbreak for her two boys.

After getting the report from pathology, she will have an appointment with my oncologist to discuss chemo options. I have been researching what chemo combos have been used with the best results on stage 4 colon cancer. I’m making my list of questions.

Through all of this I have prayed and prayed that God use me in any way to help in any way, not for praise for myself but for His glory to be seen and also so that people that don’t know Him will be reached. I have spent about as much time as my physical body will allow me at the hospital. When I’m not there I am praying and resting just enough to get back up there. I keep telling myself that one person can’t do it all. I just know this drill so well, all this hospital stuff and recovering from surgery. I find myself mothering her, trying to protect her, but also encouraging her to keep fighting, keep talking to God. She is a fighter. The coming days and months will not be easy. But with all of us banding together to lift her, her boys, her family, the doctors, and nurses up in prayer she will have some sunny days. Like I have told her and I firmly believe this, many people pray for me, for healing. I have told her that their prayers have already been answered… my body and hers will be healed…whether here on this Earth or once we get to heaven. It’s guaranteed.

Okay, so now to get on my soap box for just a minute….
I have become the poster girl for colonoscopies. If you are close to the age of 50 that is the age you should have your first scope, or if you have any family history of polyps, or Aunt so and so had colon cancer, or you have some bowel trouble please don’t put this off. If you need the name of a wonderful, Christian doctor email or call me I will be glad to give you his name. If you are nervous about the unknown, doing the prep, the actual scope, or just general stuff, email or call me. I will gladly tell you anything I can, even go with you for moral support. As you can tell I am passionate about this. Because look, if a little bitty 8 year old girl (me) can have this done then surely you can. I set up Bennie and Big Daddy for their scopes today. What about you?

Quote of the day:

“For it is impossible to be in the presence of Jesus and not be changed.”
~ Joanna Weaver

Verse:

They that seek the Lord shall not want any good thing.
Psalm 34:10

** Check out my new border and also look at my pictures. My cousin, Vickie, is the genius that helped me with this. Thank you so much!

Friday, August 31, 2007 1:00 PM CDT

Dear friends, I know you’ve been waiting for a post. It has been a tough few weeks. I am dealing with issues that we are still trying to work out. Please continue to pray with me about those issues.

Today my heart is heavy. My body is tired and sore. I have been helping a friend in the last few weeks. It has been my blessing and pleasure to be able to share my experiences and help in any way I could. I’ve been at Vanderbilt with her for most of the last 24 hours. I came home to catch a quick nap and will probably head back.

What I need most today is to pass this prayer chain on to all of you and all those you know. Please be in prayer for my friend’s recovery. God’s plan is perfect.

I’m tired for now. I want to end this post with my quote, verse, and some lyrics from a song that I have played continuously the past couple of days. Thank you Sista gur for sharing this with me. I love you.

There Is A God by 33 Miles

There is a God / This is the proof / That all around the evidence is speaking the truth / From the center of my soul / To the edge of the universe / Creation is crying out / Believe it or not / There is a God

Quote of the day:

“Life is precious. Love deeply.”
~ Stephanie

Verse:

Trust ye in the Lord forever, for the Lord, Jehovah, is everlasting strength.
Isaiah 26:4

Wednesday, August 15, 2007 10:28 AM CDT

I feel pretty calm about today. I know many prayers are being sent up. Some of your prayers are already being answered. Yesterday afternoon I got a call from my urologist’s nurse to let me know that she had been able to move me up a little bit in the schedule. So now I have to be there at 12:30 for a 2:30 procedure. Much better than getting started at 4:00 or later. Now for the prayers about anesthesia. I am just ready to get there and get back home. Just get this done and move on. It’s so great to be able to share with you the prayers that have been and continue to be answered. Thank you for your continuing support of prayer.

You know how I have always said that if I could help one person it would mean so much to me? Like an added bonus for having this experience knowledge, if that makes sense. Well, yesterday was a good day for that. Though, I do need you to pray for my friend and her boys. To make a long story short she has diverticulitis. It went undiagnosed by a doctor for months. In that time her intestines tore so she has a pocket of infection. She’s been extremely sick. Last Friday she went in to the ED at Vandy. She got home yesterday with two drains, pain, lots of medicine, and scared of how to take care of this stuff. She also wasn’t really given enough supplies to get through a day, much less a week. They are hoping after a ct scan done in a week they will be able to pull the drains. Anyway, I talked to her, got together supplies that I have left over for drains, and went to her house to see how I could help. The biggest thing was I wanted to relieve her fear of the aliens coming out of her abdomen. The first time you see them on your body that’s how you kind of feel. I walked her through taking care of them and answered any questions. I told her I would do anything to help in hopes that it would make this easier for her. Just the unknown is what can be so scary. Plus, when you don’t deal with doctors a lot sometimes the things they say just kind of go over your head. So I offered to go with her for her ct scan (especially since I know everyone there). I just want to help her get through this. Please remember her in your prayers.

Well, I am going to stop here for now. I have to go put my Emla cream on (it numbs skin) so I can have my port accessed before the procedure. Something about a one inch needle being stuck into your chest is crazy. But after this many times, it’s just a walk in the park. Funny what we get use to and think is okay.

Quote of the day:

“Hug a little tighter, smile a little longer.”
~ Stephanie

Verse:

Delight yourself in the Lord and he will give you the desires of your heart.
Psalms 37:4

(Pegram buddy, thank you for sharing that verse with me, your favorite.)

Monday, August 13, 2007 2:46 PM CDT

Hey, thank you so much for all of your prayers. They are definitely working and very appreciated. I had my lower scope this morning. My “Captain” surgeon is the best. He talked to me before he started to tell me it wasn’t a tough girl contest because they all knew how tough I was. We talked a little longer about weight, different issues, and just life. The exam and scope was uncomfortable but okay. The cool thing was that in his new office I got to watch on a monitor while he scoped. There really isn’t much medically that bothers me. My pouch seems to be doing just fine in appearance. It’s the attitude of it that needs adjusting…ha ha.

I just got my call for the time of my stent change on Wednesday. I have to be there at 2:00 for a 4:00 start time. I usually always have this done in the morning. I like it better that way. By that time of day who knows how far behind they will be running. Plus, there is the issue (not really an issue) of making sure Zach is taken care of since I will be at the hospital when he gets out of school. But I am already on that. Please continue to pray for this procedure. After how smoothly today went I am feeling very hopeful about Wednesday. Your prayers are boosting my spirits.

Quote of the day:

“You have to accept whatever comes and the only important thing is that you meet it with courage, and with the best you have to give.”
~ Eleanor Roosevelt

Verse:

Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.”
Psalm 27:14

Sunday, August 12, 2007 10:06 PM CDT

I think if given the opportunity to blink through this week I would do it.

You would think that after so many years of having this done it wouldn’t be anything. But things are a little different now. From the time I was almost 15 until 4 ½ years ago I was dealing with a body that I was fairly comfortable with, one that I pretty much knew what to expect. It’s not the same since the surgeries started again 4 ½ years ago. I haven’t talked to anyone about this, that is until now.

What I was use to and comfortable with completely changed on January 30, 2003. Oh, I have learned to handle it the best that I possibly can. But sometimes I long for those simple days. Or what seems so easy now. Every day is different now. Never quite in that comfort zone. That most definitely includes a whole lot of long nights. You see most nights I don’t lay my head down to rest until the wee hours of the next morning. Then the alarm clock goes off to start the new day at 6:30. I survive on very few hours of sleep. It all has to do with my pain level, how angry my pouch decides to be with me, issues with the nasty stent, and so on. Just stuff.

Which brings me to this week. Today I have been on my clear liquid diet to prep for my flex seg scope (lower scope) in the morning. It hasn’t been a problem with wanting to eat today or being hungry. It’s just the fact that I am not allowed to eat that gets me. I think from spending all those months and months on TPN.
The last couple of years I have had the easy way scope I call it. Those times I have had conscious sedation. That is so different from the past, all those years I just had my scopes done in the clinic, wide awake, no big deal. That’s just the way they were done. I pretty much knew the routine. Still do now, just not looking forward to it. After so many surgeries down there it’s just not what I want to do on a Monday morning. But I have to get this behind me…ha ha.
Then to further my whining, I am scheduled on Wednesday to be put to sleep to have my stent changed out. When they do this the doctor scopes my kidney and bladder to make sure they look okay. The last three times I have had this done each time has gotten increasingly worse as far as having a very hard time waking back up and being so incredibly sick. I am getting so sick even though I have the handy dandy scope patch on and multiple rounds of nausea medicine. Hopefully the anesthesiologist will be able to get a more agreeable mixture of agents this time.

So now maybe you can understand why I started this post out by saying I would blink through this week. Otherwise I wouldn’t so carelessly give away a single minute. But by the end of the week I will have this all behind me. Finished for a few months, until next time.

Okay, so I have told you in past posts that I was going to try to be more open about things. A tough thing for this girl to do. I like those pretty pictures. I have been struggling with all the wonderful compliments that people have been so graciously giving me. The “You look so great. I’m so glad you are better.” Or “I’m so glad you feel good now.” There are so many of them. Please don’t get me wrong, I appreciate them very much. I am very blessed with a wonderful “outside” picture. The inside right side of my body is the hidden bad parts. I struggle because I never want to seem ungrateful for where God has brought me to. It is His grace and love that got me to these days when I no longer have a drain hanging from my hip, tubes coming out of my arm for nutrition, chemo running through my veins, and so on. Very, very thankful. Not a day goes by that I don’t thank Him. I have actually found a support group online called “But You Look Good”. It is a place of support for people that are dealing with chronic illnesses. I am so glad that I found it. Another FAP woman told me about the site. Thank you for sharing it with me, for knowing it would be a blessing to me.

No more whining for tonight. Each day is a new and very challenging experience for me. I thank my Savior for allowing me to still be here with my boys and for seeing value in me, for loving me. I thank Him also for believing that I can walk this journey with His help and your wonderful support, love, and prayers .We all do this together. My hope is that it is pleasing to Him and glorifies His name.

Please leave me a note on my guest book. You don’t realize what the one sentence you type may mean to me.

Quote of the day:

"Love has its source in God, for love is the very essence of His being."
~ Kay Arthur

Verse:

Herein is love, not that we loved God, but that he loved us, and sent his Son to be the propitiation for our sins.
1 John 4:10

Tuesday, July 31, 2007 4:58 PM CDT

Foolish heart, looks like we're here again.
Same old game of plastic smile,
Don't let anybody in.
Hiding my heartache,
Will this glass house break?
How much will it take before I'm empty?
Do I let it show?
Does anybody know?

CHORUS:
But You see the real me.
Hiding in my skin, broken from within.
Unveil me completely.
I'm loosening my grasp,
There's no need to mask my frailty
Cause You see the real me.

The Real Me by Natalie Grant (only part of the song)

In the last few days this has been such a song of strength and hope for me. Isn’t funny how we go through life trying to solve problems, trying to fix things, wearing that plastic smile, and at times feeling so alone, almost lost, feeling like there is no one to talk to, none that could truly understand or maybe love us if they did. Admitting that doesn’t make us weaker, less lovable, no instead reaching that hand up and talking with the most important One, the One that made us the way we are. The One that knew from the beginning everything there was to know about us and still He loves us. But sometimes we get so busy in life that we don’t think about sharing with Him. We can fix it, or at least wear that plastic smile. That’s what we think. It didn’t start out as any kind of big deal. Until sometimes that brick wall hits us square in the face.

I have to think and pray very hard about this post, about sharing. This is very tough and I don’t know if I will ever push the post button or not. I can’t even believe that I am sitting here praying about sharing this. I have only gone so far with my posts in the past. But it is always where I have been felt to share. Until now for the most part it hasn’t been too painful. But to share this, to open my heart up like this….well, it’s out of my comfort zone. I like those pretty pictures, you know the easy, “I’m fine” answer. To go further is to crack that door to the unpleasant. So it’s just easier. I know, I am stalling, hoping that I will feel led in a different direction with this post. But that doesn’t seem likely. You know I always say that until the words are there I don’t post. It’s true. But when the words are there they come like a flood. Almost faster than I can type. They just flow.

The lyrics to The Real Me when I started listening to it the other day rang so true to how I have been feeling. I have spent a lifetime trying to be what I felt everyone around me needed or expected me to be. It’s who I am. It’s what I do. It makes the picture prettier. Only every once in a while the realness gets a little too hard to cover. To look at me I look better than I have in a very long time. The outside is a “pretty picture”. But the inside is where the battle rages on. For years now I have fought and fought and had the mindset that I could punch through. In a lot of ways I have. God has been there. He has saved me more times than one. Like Brother Fred said one time in a sermon, “God doesn’t save you from something. He saves you for something.” He definitely has a plan in mind for me. I know this is another lesson, a tough one, trying to share the inside. I don’t like to do that. You know Big Girls” don’t do that, I thought. Or maybe He is trying to teach me that “Big Girls” let people inside to see the whole picture or at least a more real picture of what they are praying for. I will continue to be in prayer over this. It will be a work in progress.

For now I am happy to have these “good” days. I’ll take as many as He will bless me with. Not a single one goes by that I don’t thank Him for loving me so much.

Please continue to be in prayer for me.

Quote of the day:

“Again and again, I’ve found Him faithful to respond, and the closer I move to Him, the safer I feel and the better I rest.”
~ Patsy Clairmont

Verse:

Seek the Lord, and ye shall live.
Amos 5:6

Wednesday, July 25, 2007 11:37 PM CDT

Yes, yes, today, what is left of it, is my birthday. My 42nd birthday to be exact. It has been so funny the number of people that were shocked by my age. They were all guessing in my 20s. Do you think they were just trying to make me feel good? Of course, I told them very quickly that I was 42 and that I claimed every one of those years and was proud to say it because I had earned every single one of them.

Today has been a wonderful day for me. Thank you all for the many calls, cards, emails, notes, renditions of happy birthday, gifts, and so on. I am looking forward to the lunches that some of us have set up to celebrate. You are all so sweet to me and I am so very thankful and blessed by you all. Your friendships, love, and prayers are the best presents of all.

I have sparadically posted in the last few weeks for a number of reasons; vacation, schedule, many doctor appointments, dealing with some heartache and the stress from it. Also, I have been “running”. I call what I am doing “running” because I am trying to do and see everybody that I can. Trying to enjoy and experience every bit of normal everyday life and fun. I call it running because I want to do as much as I can possibly while I can. We don’t know how long this good period will last, hopefully years. But until I receive my healed body I will “run”. So any of you that want to join in my running please give me a call. Lets do something together. It doesn’t have to be anything elaborate. I’m a simple kind of gal. I love just laughing, feeding the ducks (that’s a personal favorite), sharing stories, just being with friends. Life is short and I want to fill mine up.

I have some very wonderful news to share. Do you remember right before my vacation my surgeon here and Dr. Church had spoken about the fluid collection in my abdomen? They had decided it needed to be drained, with the very real possibility of having a drain for who knows how long. I had decided to wait until after vacation to deal with that. During vacation the fluid related pain and low grade fevers popped up again. A whole lot of prayers were being sent up. I tried on vacation to not think about all of that stuff. When we got back home from vacation I asked to have my ct scan moved up to see how things looked. The last ct was in January. This ct showed that the fluid collection had resolved itself. No need for a drain now. Our prayers once again answered. Praise the Lord!!! Let me tell you every single day is very precious to me. Every day without a drain coming out of my stomach hanging by my side, every day that I can pick anything my heart desires to eat (making my stomach understand all of that will hopefully come in time), every evening that I can get ready for bed without having to go through all the process of setting up my 12 hour cycle of TPN, every day that I can wear what I want without having to see if my clothes will fit over my drain comfortably, Every single day, what a blessing. I will take every single one of these days.

Next week I see my plastic surgeon again to let him see how my open wounds are looking. Still packing them every day and still praying that they will heal without having to have more surgery. For now the tumors appear to be stable no true growth. So for now my oncologist has decided to let me take a break from all my nasty meds. But at the first sign of trouble he said that he will probably put me on 6 or 8 more weeks of chemo. Just a short course. That’s just about all my little body can handle though.
In the coming weeks I have to have my lower scope done, not looking forward to that. I can’t tell you the number of lower scopes I have had in my life, starting at the age of 8. Even so, still not okay with me. Also it is past time for my upper scope. I’m hoping for a clean look on that one. Oh, and it is time once again to get the dreaded stent changed. Yuck. Oh well, Big Girl Panties for sure. Ha ha. All my GS buddies that read this feel my pain and know where I am coming from.

Okay, so with about 40 minutes left of my actual birthday, this has been a wonderful day for me. Diva, you know I love you with all my heart and I am so thankful for your deep love for me. The love that made me a reality. Big Daddy, thank you for choosing to be my daddy, for picking me. I’ll never get too big for my dad. I love you. My birthday always makes me think about them. Because without them there would be no me. My mother’s sheer determination and never ending love and devotion goes beyond the words I can adequately express. Today is happy birthday to us, Diva. On this day 42 years ago a young girl became the best mother in this world. I am forever grateful and humbled by your heart and love.

Quote of the day:

“To the world you might be just one person, but to one person you might just be the world.”
~ Author Unknown

Verse:

Your love has given me great joy and encouragement.
Philemon 1:7

Monday, July 23, 2007 10:27 AM CDT

Hi everyone! I know you've been waiting to see a post. Thanks for being so patient. I will be adding a full post later this afternoon. Lots of stuff. Hope you all are enjoying your summer. Catch you up later today.

Quote of the day:

"Enjoying every second that you are given is the best medicine."
~ Stephanie

Verse:

I can do all things through Christ which strengthens me.
Philippians 4:13

Friday, June 29, 2007 10:17 AM CDT

Gosh, I have a lot of catching up to do. I guess I should start with about the week before we left for vacation. I got a call from my surgeon . He had sent slices of my last ct up to Dr. Church. This was so they could make a decision together about what to do. The desmoid I have on the right side has filled with fluid again. They both agreed that it needed to be drained. So he called to ask me when I would like to have this done. I knew that there would be a possible chance that I would have to keep the drain. Not the type of accessory I was planning on taking to Florida. Doesn’t really work with a bathing suit or shorts. Since I hadn’t been running a fever or had the pain associated with it I have had in the past I didn’t think it was urgent. We both agreed I could wait until I got back from vacation. To tell you the truth it kind of took a little wind out of my sail. It has been so wonderful being drain free for the last six months. I just didn’t want to take the chance.

During vacation a few things happened. I started having that type of pain (although it could also be associated with my stent since it is on that side), headaches, and hyperpigmentation with my skin. But still no fever. Thank goodness. While on vacation I tried not to think about medical stuff. But it is always there you know. I always try to stay on top of things. So I was constantly trying to decide what my next step would be. My decision was to get back, move up my scheduled ct scan, move up my appointment with my oncologist, make an appointment with my endocrinologist, and go from there. I want to see how things look compare to my last scan in January before I jump into draining this bad boy that always ends up giving me trouble. Then the headache and skin stuff can be symptoms of adrenal fatigue, not a good thing. So I want to get my one little precious adrenal gland checked out. All this, plus it’s about time to get this nasty stent changed out. I call it the nasty one because it has taken me a couple of months to get okay with this one. I’ve never had one that hurt so bad or took this long to get adjusted to.

Yesterday I had an appointment with my urologist. The appointment where he sees how I’m doing and sets up changing the stent out. I told him I wasn’t looking forward to going through that again because I had just gotten okay with this one. He told me it was because he had put a larger tube in the last time. I’m glad he told me. I had thought I was being a baby about it. All the while it was a larger tube in my ureter. I also let him know my concerns about the anesthesia. The last two times we have done this I have had an impossible time waking up and been extremely sick. He told me I should talk to the anesthesiologist about what agent they used. So I have to remember that. We scheduled the stent change for August 10th. I didn’t want to do that while Zach is out of school for summer. I am trying to make sure things are as calm and doctor free as possible to enjoy this time with him.

I’m still working on my abdomen. My plastic surgeon said that he is hopeful that given time it could heal on its own. I asked if he thought it would be healed by Christmas. He told me if we are lucky. I would consider it a blessing seeing as that would make it a few weeks over a year since the surgery. When you think about it, its kind of crazy weird to be walking around with open places on your abdomen. But like I have always said...I am blessed that all that goes on with me is inside. I can walk around and nobody could tell.

Okay, so enough about that stuff. More exciting stuff is that I got to give the devotion (devo) for the youth group at our church Wednesday night. I was both excited and a touch nervous. We had a lot of fun, laughed. On our way home afterwards, Zach was driving of course, he said that I had done an awesome job and he enjoyed it. Well, that was all I needed to hear. What a wonderful evening. You know that is what makes life worth living, sharing your love for the Lord. Like I told them, God’s plan is always perfect. Although our journey can have many twists and turns, ups and downs, it is the one He walks with us. He doesn’t give us more than we can handle while holding His hand.

So we all must continue to walk with faith.

Quote of the day:

“Enjoy this moment. It’s the one that counts.”
~ Stephanie

Verse:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11

* This is my Infra buddy’s (LB) favorite verse. What’s your’s? Please share them with me.

Tuesday, June 5, 2007 10:14 AM CDT

As I sit here listening to my buddy Thomas’ cd I am thinking about each of you, my friends. I am very blessed that God has put you in my life. You have been such a source of strength, encouragement, and understanding. I admit that I have had a couple of stumbling blocks placed in my path recently. But each day is a new day and I will continue to take one step at a time to learn from, forgive, and move on. Any life, not just mine is too short to allow that. I realized that I was making myself physically and emotionally sick because of actions by others that I could not understand. I forgive them and am praying that God’s grace cover them. Even as close as we draw to our Savior we can still become confused or lost in the dark, have stumbling blocks. That is because we are human. We will sin. But our saving grace is that He loves us. He loves us before we are even placed on this earth and He loves us even when we stumble off the path. He loves us. If you have a “stumbling block” please take a few minutes today, go to the Father. He is waiting.

Quote of the day:

“If the wounds of millions are to be healed, what other way is there except through forgiveness?”
~ Catherine Marshall

Verse:

For thou, Lord, art good, and ready to forgive; and plenteous in mercy unto all them that call upon thee.
Psalm 86:5

Thursday, May 24, 2007 1:53 PM CDT

I want to start by saying thank you so very much for all of your words of support, encouragement, and love. I draw tremendous strength through you. The past few weeks have been extremely heartbreaking for me. At times I have felt like I have been hit from all sides and the only way to hold on was to look up. Of course that is the best thing to do. As the days pass I regain strength, concentrate on the positives in my life, and look to the future. I know that all of this hurt and recent betrayal has been just another lesson. While I am still nursing a broken heart over the past weeks, I do forgive and pray for healing of those individuals.

On to other things. Zach’s last day as a freshman was yesterday. I can’t believe the year has flown by so quickly. Now we are gearing up for another busy summer, between basketball tryouts, then the multiple camps, vacation, and so on it should be a lot of fun. The end of this school year is a little bittersweet for Zach. He has become close to a number of the seniors that are graduating. They have hung out here at the house playing Guitar Hero, watching movies, grilling out, just having fun. They have all promised to come crash at the house from time to time on the weekend.

Updates on the medical front. I was scheduled to have my lower scope done last week. It didn’t happened. I had been having so much trouble with my weight, stomach trouble due to stress and nerves, and lack of appetite that when I actually felt that I was hungry last Sunday evening I just ate. I still went to see my surgeon on Monday. He needed to see my abdomen and discuss a few other issues. The abdomen, well, I’m still packing it, still waiting to see what the outcome will be for this. My surgeon and plastic surgeon are suppose to talk about it. Then my surgeon here will actually be seeing good ole Dr. Church next week to discuss my abdomen and also what to do about my ever present cystic desmoid. He told me he is not sure at this time if we should continue to just watch it or go ahead and try to drain it. Of course when I hear the word drain I think of the drain I have been delivered from since December. No that doesn’t make me happy and yes that is what it would mean….living with another “accessory” for who knows how long. So I told him I wasn’t ready to entertain that choice right now because I am not running a fever and do not have the associated pain issues that I have had in the past with my cystic desmoid. Until that happens, if it ever does, I don’t want to go through that again. Call me spoiled I don’t mind. But I am enjoying being outside “accessory free” right now.
So in the near future I need to have my upper and lower scope done, labs drawn again, ct scan, and follow up appointments with the doctors involved.

It’s a beautiful day outside. Summer is here. I am looking forward to being out and spending time with my friends. I love you guys and girls. WooHoo buddy lunch soon. Shoe Buddy and #15 lunch and shoes real soon. I’m working on new necklace creations also. Florida buddy I am hoping to see you in Chicago for Neocon. Please tell me you are going. Sista Gur we must get together with the kids soon. I miss you. Sista Gur’s mom you are the best. Please send me some info on mangosteen. Infra buddies be on the lookout for a Stephie visit soon. And my list goes on and on.

Well that’s all for now. Thank you so much for continuing to read my journal. Your prayers, love and support are a blessing to me and my family.

Quote of the day:

“What a blessing for another good day!”
~ Stephanie

Verse:

Peace I leave with you, my peace I give unto you; not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
John 14:27

Thursday, May 17, 2007 8:49 PM CDT

Do you ever have a day, or night for that matter, where you think, I wish for the easy days. The times you took for granted. The times that you thought would last forever. Because you didn’t see any reason why they wouldn’t. Those were my thoughts a few nights ago as I got ready for bed. I should explain that better though. Since my last post I have been under an extreme amount of stress. The stress has been from a couple of things. There is always the ever present medical issues. But add to this a deep trust and relationship that was completely broken. This has compounded the everyday medical issues I deal with.

The medical stuff…well it’s still there. Since my last post I have had multiple tests, seen multiple doctors, and are waiting for some decisions to be made. A couple of days ago I saw my plastic surgeon to let him check on my abdomen. It has gotten worse. The last area that opened up has gotten larger. It is also deep, deep enough that you can tell it is through the thickness of skin and there is something I could see and didn’t know for sure what it was. I was concerned it was my mesh, which is what separates my insides from the rest of the world. Not a comforting thought. My plastic surgeon is not positive what it is. He cut a piece of it out, which did not make Stephie a happy girl. I called my surgeon’s secretary to ask her to let him know how I felt. To me someone that does not have experience with what is on the inside of me should not freely cut away. He and my surgeon are going to have a talk about the best way to proceed.

Next week I have a busy doctor week between Zach and me. On Monday I have to have my lower scope done. Of course that means clear liquid diet and other prep to be ready. Fun, fun, fun. Monday afternoon Zach has an appointment with his pediatrician. Tuesday morning I see my doctor to get my night guards and bite plate to see if it will help with my jaw that keeps locking. Please, I pray it does. Then that afternoon Zach goes for his finally orthodontist visit prior to getting his braces off. We are all so excited about that. And that is just the first two days of the week.

Tomorrow morning I am going to Zach’s school for the end of the year awards program. Our first in high school. I can’t believe he is just days away from finishing his freshman year. Then Sunday afternoon we have his basketball awards banquet. It’s always busy around here. But that’s okay because I am just so very thankful and blessed to be here to be a part of all of this and to enjoy every minute.

Thank you for your continued emails, notes, cards, prayers, and love. Without you this journey would be a much more lonely road to travel. You continually lift me up. I pray blessings for you all.

Quote of the day:

“You have to accept whatever comes and the only important thing is that you meet it with courage, and with the best you have to give.
~ Eleanor Roosevelt

Verse:

Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.
Psalm 31:24

Friday, May 4, 2007 3:37 PM CDT

Gosh, so much has been going on. Let me start this the best way…by praising God and all His many blessings, especially the ones that some people would see as small tiny blessings. But it’s those small, tiny blessings that can rock you to your core when the battle has been so hard. Yesterday Bennie and I went to Lowes to get paint and supplies to redo Zach’s room. When we first got their we had parked over by the front door. After we had checked out we were down at the other end, the contractors side. Bennie was chatting with a couple of people and he casually asked me to go get the car and move it down to where we were. As I walked out the doors into the sunshine a small (amazing) blessing hit me so hard. Something that anybody else might not fully understand. It brings tears to my eyes just typing this. I was so amazed and thankful that I was able to do this small task. So small to the normal person that you don’t even think about it. But for me I remember only a couple of months ago and many times in the past when I have ridden with Bennie to pick stuff up from Lowes and wondered how I would even make it from the truck to the door. At that time I would definitely not be able to walk across a parking lot. I was so overjoyed with the simple ability to do this tiny task. If you could have seen me, I had the biggest smile on my face and I just started talking to God telling Him how thankful and blessed I felt and how much I loved Him. You know we all want the big tough prayer requests to be answered. But those tiny ones are priceless jewels also. I just can’t adequately express my emotions. Just to be here, as simple as that. Thank you, Father. Thank you for the blessing of this journey. Please help me to walk it for your glory and honor.

I will post the rest of this later tonight or first thing in the morning. I want this portion of the post to be separate. I think it should stand alone.

Quote of the day:

“It is not the length of life, but the depth of life.
~ Ralph Waldo Emerson

Verse:

Let us hold fast the profession of our faith without wavering; (for he is faithful that promised).
Hebrews 10:23

Friday, April 27, 2007 9:30 PM CDT

Whew…..the tears are still in my eyes. I always read my guest book before I start a post. I do it for many reasons; most importantly to feel the joy that each of you have left me when you leave me a precious note, but also just in case you have a question or are wondering about something then I know. Well, I just clicked over from the guestbook…reading my mother’s post. You just can’t know how much this remarkable woman means to me. God gave me to a strong woman so that I could learn from her. I love you mother from deep deep inside my heart.

I am so thankful for God’s wonderful mercy and grace. You know He doesn’t always save us from the fire. But we are never alone as we go through that fire. I believe that His glory can be seen sometimes better by others when we walk through the fire and walk out the other side praising His goodness. I am amazed every day by that goodness. Every day, just to be able to eat is such an incredible blessing. These are the good days that we have all prayed for.

Now to catch you up on the news. Bennie is doing well after his surgery. The pathology came back and the tumor was benign. Thank You, Lord! Bennie’s mom has good days and not so good. This is very tough on Bennie. Please remember both of them in your prayers.

I am still having to pack the area on my abdomen. It is smaller but the skin still looks pretty bad. I am scheduled to see my plastic surgeon in a couple of weeks to see how it is doing. The last time I saw him he said that he would rather try doing this for longer because our alternative is surgery. I am very willing to continue to pack for a while longer.

My stent….well lets just say it hasn’t been pleasant. I had to have an x-ray taken on Thursday to make sure the stent was in place right. Everything looked good. My urologist said that I have had so many stents and my ureter had gotten so inflamed with the last one. It’s just taking a little more time to get situated.

Also on Thursday I saw my PCP. I love her and her nurse to pieces. They are the best. I have been having a lot of trouble with my left jaw joint getting locked up. The popping was just getting unnerving. She sent me to have a panoramic x-ray. Now I will be seeing another doctor.

Thursday was a wonderful day for me because I got to see 2 of my nurse buddies; my PCP nurse and my Endocrinologist nurse (also my KS neighbor). Both of these ladies were such a blessing to me. From time to time I wonder of I should continue posting, if anyone cares. You know every single time I have ever wondered that, even though nobody else knows I am think that, God does. He always gives me the answer through one of you that are reading this. A lot of times it will be from someone that I didn’t even realize knew about the site. I guess I should learn my lesson. Thank you all for the wonderful blessing and great strength you are to me.

I know I haven’t been posting very much lately. It’s not by choice. I have been having trouble with my internet connection. But I think Bennie has that fixed now. I’m so glad.

Oh, I have some good news. Actually I should say Diva had this news. My dad’s doctor told them about this natural product, mangosteen. Is is suppose to work wonders and it’s all natural. We are hopeful that it can work on my desmoids, chronic anemia, osteopenia, kidneys, and all the other stuff. All I have to do is drink 6 ounces of it a day.

Next week I have physical therapy (oh joy), labs (hopefully they look better), see my oncologist, and I don’t remember what else right now.

One more thing. Sunday night is the youth service to tell about our trip to Gatlinburg. It is going to be so awesome. Bennie put together a video of all the pictures he took. I got to choose the music for the video. The video is almost 28 minutes and we get to show it all. I can’t wait for my favorite day to get here!

Thank you, thank you for all of your love, prayers, support, and notes. We walk this journey together. What happy days He has given us now.

Quote of the day:

“Being challenged in life is inevitable, being defeated is optional.”
~ Roger Crawford

Verse:

For you have been my refuge, a strong tower against the foe.
Psalms 61:3

Monday, April 16, 2007 7:08 PM CDT

******My internet has been out all day. This is actually a post from this morning (Monday). Since this post I have been to the doctor. I will post about that tomorrow.

Another Day by Natalie Grant

CHORUS:
(I) thank God for another day, another chance
To love the ones I love
To find my way
To laugh, to dance
And watch the sun come up
Another day I get to live
As if every breath could be the last I take
I get another day

These days, for the most part, are the “sunny” days. I’m getting another day.

I know it has been a long stretch since my last post. Things around here have been….hmmm…..up and down. It’s been a small roller coaster ride. I say small because other times have been so much tougher than what I am in now. But you know I think it’s the times like this that can get to you. When you are in the middle of the war all you can do is take that next step, keep marching on. It’s when you are in those smaller battles that you sometimes get overwhelmed and even sometimes weary.

I know you are wondering about our battles right now. Let me tell you about Bennie first. Last Thursday at 48 years old he had his first surgery, first time to ever be put to sleep. Talk about a switch of roles, me in the waiting room and then me dressing a still sleepy man. This all happened within a week’s time. He had a knot that came up on his right wrist. After a couple of different doctors appointments, tests, and then surgery the doctor told me it was actually a nerve tumor. He had to remove a portion of Bennie’s radial nerve to get the tumor. So Bennie will most likely lose the feeling on part of the top of his hand. We should hear from the doctor about the pathology of the tumor maybe tomorrow. By the way, he has been a halfway okay patient, other than the fact that he keeps on unwrapping his wrist to check it out.

Next on the list would be his mother. We had to put her in the hospital for part of a week because she was over medicating herself. Then she stayed with us a few days. Now I am the pharmacist in charge of her meds.

Then you know there always seems to be some kind of stuff going on with me. Of course, I got my stent changed out again. Let me tell you, I will never let him talk me into trying to make it 6 months. It has been sheer agony for the past 5 weeks on that front. A stent is supposedly suppose to last from 3 to 6 months. We have very definitely found out that my are only good for about 3 or 4. I am just starting to see some relief now.
I am still taking care of my issues with my abdomen. Still packing the area around my scar line. I see my plastic surgeon today. It’s not going to be a fun visit. No, the big girl shoes and panties will definitely have to be on for this one. The area I am packing still doesn’t look very good. Plus now it bleeds quite a lot, which concerns me since I am anemic anyway. Plus, now I have another spot that I’m sure he will lance and pack today. Not looking forward to that at all. I plan on having a heart to heart, get on the same page discussion with him today. I understand what he is doing. He doesn’t want to rush into doing a skin flap, only to have another spot pop up. I get that. I just need to know what the time frame is.
Then of course, there is my wonderful physical therapy. I was happy I got to cancel my appointment on Thursday since Bennie was having surgery (not happy about his surgery though). Plus, I got to cancel my scheduled upper scope. But I don’t get out of these things completely, no such luck. I have to reschedule.

Well, how about some brighter stuff now? Zach is getting to the end of his freshman year in high school. I can’t believe that baby has gotten so big and that he drives me around. Just yesterday he was stomping around in his cowboy boots and playing with batman.
This is pretty cool (or I should say tight. That’s the new word for cool.) Zach has to do a big project for biology and guess what it has to be about? Genetic disorders/diseases. That is what they have been studying about. So, of course, he decided to do his on FAP. He has his project living with him. How much better could it get? It’s been kind of “tight” because he has been doing some research on the internet in class at school. Then he will come home and ask me questions like, “Mom, do you have bad eyesight because you have FAP?” Then we get to talk about some of that. I think it has been good for him because he is having to do it for school but also because he is doing it some on his own he is learning more about it. Of course, he was always able to learn about it before, but now it’s different. I’ll keep you updated on this.

Well, I have the morning to do things around my house, finish my bible study lesson, and just clear my mind. I think I’ll turn up the praise and worship and celebrate “another day”.

The Lord is good and He is able.

Hey, and by the way, before you click off of here how about leaving me a little ray of “sunshine” on my guestbook. You never know how much that means to me and how very much it boost my spirits. Michelle, if you are reading today’s post please email me (crowe725@aol.com). I have lost your email address.

Quote of the day:

“God will never lead you where His strength cannot keep you.”
~ Barbara Johnson

Verse:

The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.
Psalm 18:2

Tuesday, March 27, 2007 11:00 AM CDT

Good morning!

I think I will start this post off with the positive. How about how the youth retreat went? It was absolutely wonderful. I was so sad when it was time to head home. I think we all had a fun time. Plus, the bonus was that one of the teens got saved while we were there. How much better could it get? This trip was such a blessing to me, just being physically able to go (Thank you, Lord) and then being given the opportunity (Thank you B & K). This trip was boy heavy (8 girls and 18 boys) so you know there was major eating being done. Bennie took lots of great pictures. So I am hoping to be able to use some of them for my photos. It will be nice to have new ones to look at. Hopefully I can get one to fit the top of this page.

Okay, so now I have to tell you about my bad, bad day. It was the kind of day that made me want to go home, climb in bed, and pull the covers over my head. Now it didn’t start out bad. But as the day progressed it steadily went downhill at a fast pace. There were many tears and laughs and smiles to make it through. My day started with an appointment with a nurse practitioner I am working with for some problems internally due to multiple surgeries and desmoids still in there. She is very sweet, but this is never an easy visit. Especially since I was going to have to go to the physical therapy that goes along with this after. I should have known when I pulled into a full parking lot in Bennie’s big truck (my car is in the shop) that the day was getting “cloudy”. I circled the parking lot for 30 minutes. I finally got a parking place, shook it off, and marched on in for my torture. While I was there she and another girl looked at my abdomen where the plastic surgeon had done the treatments on me. They both quickly said that he should see me that day. The area has progressively gotten worse, like I told him it would. I let them know that I had been calling his office most of the morning only to get a busy signal. They finally were able to get me an appointment with one of his residents at 1:00. Which meant that I wouldn’t be able to go to PT and make this appointment. Too bad…well that was a little bit of “sunshine” in my day. After I left there I did a few errands to take up time until my appointment. I also ended up wrecking Bennie’s truck…yes, I did say wrecking. No, it wasn’t bad. I grazed the side of a sign because the truck is so much bigger than my car. I thought I was clear. I think I scared the Sonic manager to pieces because I was crying. He offered to give me anything from there I wanted, even begged me to at least take a drink. I was just too upset. It was a combination of things though. My stent being way overdue to be changed and feeling like knives being stabbed in me over and over again (sorry to be graphic, but true). Torturous first appointment. And not looking forward to the next one. I left there for the dreaded Vandy parking garage. How was I going to get this beast of a truck parked in there? I did it though and no mishaps. Then I end up waiting in the waiting room for 2 hours….yes 2 hours! Back in the patient room I waited another 15, not too bad. Little did I know what was about to be done to me. Even after all of the stuff I have been through. The doctor came in mashed and pressed all of my poor little tummy. Then she lanced the first area back open wider, pressed some more, and packed it full of packing gauze with a long handle q-tip. I watched as she was doing it. She asked if I thought I could do it. So I told her about all the things I have had to do in the past; from open wounds, TPN and PICC lines, injections, drain issues, and so on. All the while thinking she was just joking around. Oh, no, next she jerked that gauze back out of me and said, “Great, I’ll show you how it’s done. You will have to do this twice a day.” By this point there is blood bubbling out of my stomach and a piece of bloody gauze, I kid you not, a foot and a half long that has come back out of me. I am feeling a little bit nauseous and this kind of stuff doesn’t usually bother me. I have a huge dressing over it now to absorb blood also. That’s probably why I chose now to update. I would certainly rather being doing this than tackling the other right now. It’s so bad that Bennie, my coaching buddy, has left, told me to let him know how it goes. He said that it made him sick just thinking about it. So I am going to have to be a big girl and just get it behind me. The first time will be the worst, from there no big deal, just another one of those things. I told Diva I guess I was so upset about all of this because I have gotten spoiled to not having doctor appointments every single day of my life since December and now I am just getting plowed with this stuff. I’m over it though, back on track.

My day did end much better though. So there is always a blessing to be found somewhere. Bennie took us to dinner last night (I hadn’t had anything to eat or drink all day). Our nephew and great niece (Bennie’s birthday buddy) met us there. We had so much fun. It was just what I needed. Then to top it off I saw my Fairview buddies while I was there. I love these two gals to pieces. They are the best. Hope you had as good a time as I did.

Tomorrow I will ask Diva to update for me. I have to be at Vandy at 6:00am for a 7:30 stent change. I am so ready to get this done. The only things I don’t like about it is that he puts me under completely (not conscious sedation) to do it. It’s probably the best though considering what all he will do to me. It’s just harder to wake up from. Then the other part is getting the new stent in. It takes about a week for things to settle down after this procedure. But the good thing is that I know what to expect and how things go. I like that a lot better than being blindsided.

Please pray for my doctors (Urologist and Plastic Surgeon), my stent change and that my kidney and bladder will still be okay, and the healing of this skin on my abdomen. I will see my plastic surgeon on Thursday so he can see how it looks.

Well, enough about that bad, bad day. That’s behind me now. Today is going to be the brightest, “sunniest” day. I love Springtime! Butterflies and daffodils.

Please take a moment to stop by my guest book and leave me a note. Your notes mean the world to me especially on those not so great days.

Quote of the day:

“We must continue to ask God for wisdom and insight to persevere. He will cause us to rise up and fly like eagles, walking and not fainting.”
~ Norma Smalley

Verse:

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Isaiah 40:31

Monday, March 12, 2007 11:49 AM CDT

It has taken me a few days to get to this post. Not because I was holding up, just because I was held up. Held up by my computer. You know how that is, I’m sure.

I ended up having 2 doctor appointments the end of last week. One planned. One not planned. The unplanned one was because the area on my abdomen that the plastic surgeon had worked on 2 weeks ago wasn’t healing right and also another place twice the first one popped up below it. So I had to go back in have the first one burned back down again. Then he lanced the second one, drained it, and then used the silver nitrate. The difference this time was that the second area actually had feeling. It was quite uncomfortable to say the least. That all happened on Thursday. So imagine my disappointment when I was changing the dressing last night and saw that I have another one that is coming up to the left of it. YUCK! I’m not looking forward to calling his office again.

Then on Friday I had to go to my doctor that checks my bone density once a year. I now officially have osteopenia to the point that he warned me about the dangers of breaking my hip. Plus, he put me on medication for it. I was not a very happy camper when he said it wasn’t a good idea for me to roller skate anymore…or ski. Of course, he said that he couldn’t stop me from doing those things. But I will have to be very careful.

I am not going to stop enjoying the life that God has brought me to. We have worked so hard to get to the “Sunny Days”.

At lunchtime today Zach and I are going to spend a couple of days with Diva and Big Daddy. Just chill and have fun. It is Spring break after all. Then on Thursday morning Bennie, Zach, and I are headed to Gatlinburg with Zach’s youth group for a retreat. I am so excited about being able to be a part of this. Please join me in prayer that God’s presence will be felt there. I will be giving a devotion to the girls’ group one morning. I am both excited and nervous. The devotion will be about having a life verse that you claim as your own and also about faith. I will tell you how things go when I get back.

Quote of the day:

“Prayers are answered…just look at me.”
~ Stephanie Crowe

My life verse:

Trust ye in the Lord forever, for in the Lord, Jehovah, is everlasting strength.
Isaiah 26:4

Please don’t forget to check out my guestbook and while you are there leave me a little “sunshine”.

Monday, March 9, 2007 3:27 PM CST

******I will post an update this afternoon after my doctor appointment. So check back.******

As I sit here I am overwhelmingly amazed at how good…no great our God is. Even when the waters are fairly calm…yes, just last night Bennie and I were talking about how wonderful these days are. God continues to ask even the smallest of prayers. It seems like every time I start to think I should go ahead and close out my benefit account because the funds are so low, He provides once again and gently says, “No not yet.”

This is a bad thing to admit, but I haven’t balanced that account in months. I haven’t because nothing was going in (or so I thought) I had only been paying out to the pharmacy, hospitals, and doctors. So I pretty well knew what was there and what wasn’t. The balance was getting almost none existent. At least that is what I thought. For some reason today I decided to balance that account. I happened to have gotten the statement in the mail. I started checking off all the checks that had come through. But when I glanced at the top of the page the balance they had was definitely not what I had. So you know me I had to go back through all the statements I had just been filing away. You know the ones I just put up because I thought I knew what I had. Even when we don’t realize it God is answering even our prayers we hold inside. Yes, a deposit was made into my account on December 4th last year. Can you imagine the shock, awe, and unspeakable joy that flooded through my heart? I am in awe and overwhelmingly thankful for this selfless gift. This friend(s) is such a blessing to me. I am fairly sure I know which one of you gave this gift and I am forever grateful. It is an answer to a prayer that I have kept inside. Thank you so much for this gift.

As I said, Bennie and I were talking about how wonderful these days are right now. I mean just think, last year I spent a great part of it unable to eat, being tied down to TPN 12 hours a night, admitted in the hospital too many times to count (you know it’s bad when the ER people know you by name), over 100 days spent with multiple doctor appointments, procedures, and tests, and the list goes on. We know there will be hurdles ahead. But for now the “Sunny Days” are absolutely the best. Each day that I get to eat, dress without a drain to worry about, not have to cover a PICC up, and so on, is such an answer to prayer and a wonderful blessing. Thank you Lord!

I need to stop here for now. I have a bible study tonight and I need to get a few things done before then. Thank you for your continued prayers, love, and support.

Quote of the day:

“God’s designs regarding you, and His methods of bringing about these designs, are infinitely wise.”
~ Madame Guyon

Verse:

And we know that all things work together for good to them that love God, to them who are the called according to his purpose.
Romans 8:28

Friday, February 23, 2007 9:12 AM CST

This has been a crazy busy week. For the most part it has been all good stuff. Like getting to have lunch with #15 and my Shoe Buddy on Wednesday. I had the best time! Next time girls we have to take SB’s convertible.
Of course we have had basketball this week. Wednesday night Zach’s team won district championship. On Saturday they start regionals.
Yesterday I had my appointment with the plastic surgeon. Let me tell you I was a little nervous about this appointment. But it went okay. No surgery plans for now. We are going to monitor this area on my abdomen. He said that it is okay for now. But there is no guarantee it won’t die in 6 months, a year, or longer. Yesterday he stuck a needle into one area of my abdomen to drain some fluid off. Then he use some silver nitrate to burn that area down to try to encourage it to scar. Until that area has healed I have to keep it bandaged. So, overall, yes, the appointment was much better than I had thought it would be. Thank you, Lord!

Today, no doctor appointments for me! But I do have to go to the hospital, different hospital, and not for me. One of my buddies’ husband is having a quadruple bypass today. So another girlfriend and I are going to go sit with her while he is having his surgery. Please remember them in your prayers. They have a son that is Zach’s age. So I know he is worried to pieces about his dad.

I will post more once I get back. Zach also has a doctor appointment today. So see I seem to always be around doctors no matter what. Isn’t that funny.

Quote of the day:

“I am living for today.”
~ Me

Verse:

"I listen carefully to what God the LORD is saying, for he speaks peace to his faithful people." (Psalm 85:8, NLT)

Tuesday, February 13, 2007 7:26 AM CST

****This is my post from the other afternoon. I thought I had lost it. But thankfully not. It just took me a few days to find it again. I actually saw my surgeon yesterday. I will update that next time. Today I am headed out to spend a couple of days with my sweetheart in East TN to celebrate Valentine’s Day. I am going to ski while I am there. I am so excited because it’s been a while since I have been able to. We’ll see how it goes. I’m sure I will have plenty of stories.

In the past week and a half I have been to too many basketball games to count (I love it), had a CT scan, blood work done twice, seen 8 doctors, and scheduled 2 upcoming procedures. That’s not even touching the every day stuff. I stay busy and tired that’s for sure.

Okay, so to give you a brief overview of all of the above stuff. My labs are still low so I really need to accept starting the Procrit injections again. I’m working on that one. My CT showed a fluid collection once again on the right side. I will see my surgeon here in town on Monday to discuss this. Plus, I am sending a copy of this CT and the report to our friend, Dr. Church, for his opinion. The CT also showed that my right kidney is becoming more enlarged, along with the left one starting up now. Right now we are going to monitor the left kidney. For the right one it is time to change the stent out. I also found out that I have strep in my urinary tract. So I am heading to the pharmacy for antibiotics for that. There is good news though…the desmoids do not appear to have grown any. What a blessing! My other procedure I had to schedule this week is my lovely upper scope. Hopefully things will be clear in there. Last year they were. The year before I had to have an ampulectomy. After my upper scope, then it will be time for the wonderful (NOT) lower scope. Just trying to get this stuff all taking care right at the first of the year to knock out those deductibles…ha ha. But really that is just how it is all happening. At least I will get them behind me though.

I have a couple of concerns. I am having pain (also now have a lump) at the top of my scar. I will see what doc has to say about it on Monday. Bennie is concerned it could be a new desmoid since they like to pop up around scar tissue and after trauma to the area. I think it could be a hernia. Hopefully it won’t be either, just me doing more than I should. The other concern is at the lower part of my scar. Some of you may not be aware that I went through 7 weeks of radiation 11 years ago. So this area usually reacts when I have surgery. But this time it has lasted longer and seems worse. My nutrition doctor strongly urged me to make an appointment with my dermatologist. When I talked to my surgeon he said that he wants me to see a plastic surgeon. He thinks that my abdomen has been operated on so many times that the blood supply has been lost to that area. It could possibly mean more surgery with skin grafts to fix. Hopefully not though

I have to stop here for now to finish packing. I hope you all have a beautiful Valentine’s Day.

Thank you so much for continuing to leave your notes on my guest book. They are such a strength to me.

Quote of the day:

“You have to accept whatever comes and the only important thing is that you meet it with courage, and with the best you have to give.”
~Eleanor Roosevelt

Verse:

Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.
Psalm 31:24

Friday, February 9, 2007 10:21 AM CST

Good morning!

I have some errands to run this morning. But I will post as soon as I get back. So check back after lunch. I hope you all are having a fabulous Friday!

Friday, February 2, 2007 2:18 PM CST

I have taken the last couple of days to digest what the doctor told me on Wednesday. Remember I had an appointment with my oncologist to go over the results of my CT. I went to the appointment by myself, that is always a sign that I am feeling better. I wasn’t concerned. I felt pretty good. When I first got there I had to have labs drawn. The results on that were no surprise to any of us. My labs are still low. Of course, I haven’t started my Pro-crit injections yet. I was hoping that my labs would, I guess, magically look better…no such luck. So now I have to start those yucky injections. What I don’t like about them most is that it makes my joints and bones hurt. But maybe I won’t have to take the injections for long.

Then came the results of my scan. I was a little shocked. Like I said, I have been feeling alright. I wasn’t expecting this to be anything, just a scan post surgery. Then the words I dread to hear came out of my doctor’s mouth…there is fluid in the right side again! My mind quickly raced to all of the months I had lived with the drains in my side and how wonderful it has been since December 6th. I didn’t expect this. I told him I felt fine, no fevers, no familiar pain. He made me an appointment with my surgeon here asap. He and I will have to decide what to do; whether it be watch and see or another drain. This has been hard to digest. Then the next blow; my kidneys, both of them. As you know I have a stent in my right ureter to help my right kidney function. Now it is looking like I will have to have a stent placed in the left ureter also. That kidney is now enlarged. It is probably due to scar tissue or one of the desmoids. That is what these desmoids do. They attach themselves to organs and muscles and do their damage. But overall, thankfully, my desmoids have not grown as far as they can tell. That is a blessing.

So right now I am kind of quiet, just enjoying each moment, and praying for strength should there be a coming battle. Because this day is all that we are promised. And what a day He has given me. I am at home with my boys. I am able to enjoy meals with them. Zach has a basketball game this afternoon. Most of all, I am covered in prayers and love by you all. With all my heart I thank you for your continuous ministry to my family and me. We are blessed.

Please continue leaving your notes on my guestbook. They are treasures to me.

The quote I am using today is one I read in a testimony by Dave Dravecky. He uses this quote often.

Quote of the day:

“When God wants to do an impossible thing, He takes an impossible man and crushes him.”
~ Alan Redpath

Verse:

Be thou faithful unto death, and I will give thee a crown of life.
Revelation 2:10

Monday, January 29, 2007 8:56 AM CST

Good morning!

I wanted to catch you up on a few things. This morning I go in to have my CT scan so we can see how the tumors are and decide what treatment to try. On Wednesday I have an appointment with my oncologist to discuss this. I haven’t been on any treatment since 2 weeks before surgery. I will be 8 weeks post surgery this Wednesday. So hopefully they are stable.

My biggest concern right now though is my Zach. I am making an appointment with his pediatrician for this afternoon. He is struggling. I think it is everything all rolled up together, kind of put him into overload. The last 4 or 5 years have been tough on all of us because of all my surgeries. But the last 6 months have been extremely tough. I just want my baby to be happy. So I will continue to pray and do whatever else I can to make things better.

I have to stop here for now to get ready. I hope you all have a beautiful day and please, please say a prayer for my Zach. My heart breaks to know how badly he feels.

Quote of the day:

“A crushing hurt comes to our heart and the sympathizing, scarred hand of Christ presses the wound; and just for a moment, the pain seems to intensify,...but finally the bleeding stops.”

~ Beth Moore

Verse:

That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ.
1 Peter 1:7

Thursday, January 18, 2007 7:11 PM CST

YES, it’s the long and patiently awaited post……

6 Weeks yesterday!!!!!!

Yes, I am now 6 weeks post surgery and today has been the 1st day since surgery…well, really for as long as I can remember, that I feel like my ole self once again. What an incredible answer to all our prayers. I am so thankful for this day and what it means to me…to us. These are the days that build us up and strengthen us for the storms ahead, should there be any. Lets pray for smooth sailing though.

Healing from this surgery has been a test in patience. Of course, I went into this with goals already set in my mind…pushing. Two weeks after surgery, yes, I did make it to Panama City to watch Zach’s basketball team play in a tournament. I paid the price. But it was worth every second to feel normal. Since then I have been to see my oncologist. He was thrilled that things went so well in Cleveland. His concern now is to get my weight up and my labs also. Time and prayer will tell on these.

I have made my follow up appointment with the fabulous Dr. Church for February 9th. I am hoping to be able to do this in one day, fly up and back. That will make for a long day. The end of this month I will have a CT scan to see how the tumors are doing. I haven’t had one since September. Depending on how things look, we will decide how to proceed.

Now for what God laid on my heart to share.

F A I T H

Only 5 letters, but such a powerful word. I have had times in the last four years, during rocky portions of this journey, that I’ve questioned my faith. But I know without a doubt that those were some of my shining moments with my Father. Because my faith was being tested and tried. I was in the middle of the strongest storms and struggling. I had a choice. My choice was and will always be my Savior who loves me and knows exactly how to heal me.

God starts with something so small that we don’t really recognize maybe at the time that it is truly a test. A test of what our faith is made of. I believe that as our faith is tested we grow stronger. I don’t question my faith any more. I know there may be times when I am weak and the storm is hard. But I know also just to look to Jesus and He will bring me through. So, it isn’t a sign of a weak faith, just a sign of a trusting soul. I hope this helps any of you that may have ever questioned how strong your faith is…if you are praying, it is stronger than you realize.

Quotes of the day:

“If it wasn’t a true trial, it wouldn’t be a true faith.”

“God didn’t save you from something. He saved you for something.”
~ Brother Bob Pierce (both of these are from him)

Verses:

For we walk by faith, not by sight.
2 Corinthians 5:7

The life which I now live in the flesh I live by faith of the Son of God, who loved me, and gave himself for me.
Galatians 2:20

For those of you that have left me notes on my guestbook, emails, sent cards, called me, and so much more…what an incredible ministry you have been doing in my life. You help to keep my spirits lifted even on the cloudiest day. Mere words cannot express what your continued love, support, and prayers mean to me. I pray rich blessings for you all each day. Now lets celebrate every day for the answered prayer. God is so good! Thank You, Lord. I love You!

Wednesday, December 20, 2006 11:03 AM CST

I am so overjoyed! Our prayers have been answered. We serve such a mighty, loving, incredible God!
It makes me think of the chorus to Thomas’ newest song he has shared with me.

Because I’m overjoyed, overjoyed, overjoyed in You
Yes, I’m overjoyed, overjoyed, overjoyed in You

Yes, yes, I have come back from Cleveland the new and improved Stephanie. Thanks to so very many prayers being continually sent up for me, my family, the doctors, and nurses. Every day gets a little better and much brighter. I can actually see going back to Hawaii again and look very forward to that day with my boys.

I know you are all anxious to hear about how Cleveland went. I know Diva has kept you up to date. Now I will share more.

Monday the 4th, Becky and Zach took us to the airport. Zach had asked if he could go and we could see that it was something he really needed. Of course, mama did just as much also. Zach and I were trying so hard to be strong at the airport. But the tears just took over. By the time Becky and he left us at the airport Zach and I were both pretty torn up.

Tuesday we spent the day seeing my surgeon and doing all the pre-op stuff. That afternoon Diva arrived and we prepared for surgery the next morning. You know last meal and all.

I went into this surgery laying everything in God’s hands. Whatever the outcome maybe. Because I knew God had my best interest at heart. But I will admit that I was a little scared that I might not make it through and if I did I would most likely have an ileostomy. So I had to be alright with that.

As you all have heard surgery was only 3 ½ hours long! The surgeon had told us the day before that 5 hours would be a very short day. So that was definite answer to prayer. While I was in recovery and my entire stay at the hospital I had trouble with extremely high heart rate and high blood pressure. But I believe that was due to the fact that it was the first surgery I have had without a pre-surgery dose of hydrocortisone. So my adrenal gland was just a bit taxed over what was going on.

When I was finally taken to a room guess what?….Semi-private! I don’t think I have ever had a semi-private room in my life. And let me tell you I had two of the craziest room mates before Diva and Bennie got me moved to my own room the last night I was in the hospital. The nights I shared a room with the crazy women I didn’t get a bit of sleep. But the last night I slept pretty good.

Today it has been exactly 2 weeks since surgery. I am feeling better each day. The first week was very hard. But that is to be expected after a tough surgery like that. It is so fantastic to be “accessory-free” on the outside for the first time in over a year. I’m still working on the eating. Monday when I went to have all 21 of my staples removed I weighed an all time low of 96. Not good. But I am trying to put those pounds on. Maybe Christmas dinner will put me over the hump of 100

I cannot tell you how thankful I am to have made it to this point in the journey. Bennie said after my surgery that he wished we had gone to Cleveland sooner. But I said it was all in God’s time…the perfect time. Although this surgery couldn’t cure me of this disease it has given me a better…more beautiful quality of life. Thank you to all of you that have been and continue to be my prayer warriors. What a great support team you are.

My Christmas wish has been answered. Thank you Father.

Quote of the day:

“Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas.”

~ Calvin Coolidge

Verse:

“Give unto the Lord the glory due unto His name; worship the Lord in the beauty of holiness.”
Psalm 29:2

Thursday, November 30, 2006 10:05 AM CST

Good morning friends.

Thank you so much for your patience in waiting for a post. The last few weeks have been incredibly hard, very stressful. Although I am in the final crunch of getting things in order and done before I leave for Cleveland, things are going a little better. My silence has been a healing process for me. Things at home are much smoother. We’ve all adjusted to the crowded house for now.

Three months ago my surgery seemed so far away and now it is just days from happening. I am getting more nervous the closer it gets to the 6th. My last surgery was just so hard that it has left me with a uneasiness that I haven’t ever had before. Not a lack of faith, but knowing just how delicate life is. So I pray. I pray for strength to get through this next part of the journey, continued faith in my Savior’s plan for me, and comfort for all my loved ones. The 6th is fast approaching.

My Zach is doing better. He still texts me everyday to let me know how he is doing during the day. But I’m not having to go to the school everyday. I am worried though how he will be while we are gone. So I am praying for a quick surgery and return home.
So if you happen to see him while I am gone please say an encouraging word to him. But don’t talk about me, talk about him. If you’ve seen one of his basketball games talk about his awesome 3 point shot. Anything but me or my surgery because that just reminds him that I am not here and makes him worry about me.

Since I last posted lots have things have gone on medically. First and most importantly, I talked my surgeon into letting me stop TPN for a few weeks to see if I could maintain my weight on my own. It has been wonderful. And yes, I have maintain my weight. Another thing, my stitch came out again…the one holding the drain in. So I had to go back in to have it put back in and also to have the granulated tissue burned away. They put silver nitrate on the granulation to burn it away. That was definitely not a fun visit.

I will try to post again at least one more time before we leave for Cleveland. Then my mother will keep you updated so check the guest book for news. Please keep us in your prayers.

Quotes of the day:

“The great thing in the world is not so much where we stand, as in what direction we are moving.”

~ Holmes

“Character may be manifested in the great moments, but it is made in the small ones.”

~ Phillips Brooks

“Rich is the person who has a praying friend.”

~ Janice Hughes

“Man is never so tall as when he kneels before God - never so great as when he humbles himself before God. And the man who kneels to God can stand up to anything.”
~ Louis H. Evans

Verses:

But now, this is what the Lord says - he who created you, O Jacob, he who formed you, O Israel: “Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pas through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you, I will give men in exchange for you, and people in exchange for your life. Do not be afraid, for I am with you;
Isaiah 43:1-5

I decided to leave multiple quotes and verses because they all spoke to me. I hope they do to you also. Now please don’t forget to leave me lots of notes on my guest book. I will look very forward to reading them all before I leave and when I get back home….the new and improved Stephanie. I hope you surprise me with lots of notes. They are such an encouragement to my heart, more than you every realize. Thank you all for caring and walking this journey with me. We are all in God’s hands.

Friday, November 3, 2006 10:19 AM CST

This has been a very emotional week especially for Zach and me. Zach is still struggling with the loss of Lewis. He is texting me everyday from school telling me he is having a really hard time. Sometimes he calls me on the phone crying telling me he just wants to come home. For those of us that know Zach we know that is just not his normal way of dealing with things. But I believe that Lewis’ death is the straw that broke the camel’s back. Zach has been such a strong boy handling all of the stuff we have been going through with me. But losing Lewis made things too real for a child that shouldn’t be worried about anything. This week has been hard for me because of how much it breaks my heart to hear him crying over the phone and trying to do the right thing for him. Oh I have plenty of people giving me lots of advice…mostly let him handle it, you’re not doing him any good running up to the school every time. I appreciate all the helpful advice. But when it comes down to it I have to do what I feel is right in my heart and live with what I do for this baby. I want him to always know that nothing is more important than him and that his mama will always be there for him.

I am excited about today. Zach is out of school today so we can spend the day together. He has a 4:00 scrimmage which I am looking forward to. Then after that he and I are headed out to Diva and Big Daddy’s for the weekend. It should be a very fun weekend. My some of our cousins and one of our aunts and uncles are coming also. I think it will be good medicine for us to just get away. It should be a weekend full of laughs and fun. I think it will be great for Zach to just hang out with his cousins and chill.

As you pray this weekend please pray that we have safety of travel, Zach finds peace, wisdom for Bennie and I as we make final decisions about Cleveland and surgery, comfort and strength for our whole family.

I am so very thankful that I have the privilege of sharing this journey with you. Thank you for being such a huge source of strength and comfort to me and my family. Your prayers are a blessing. We continue to walk this journey for His glory.

Quote of the day:

Don't ask for a light load, but rather ask for a strong back.
~ Anonymous

Verses:

Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Romans 5:3-4

Tuesday, October 31, 2006 1:41 PM CST

I didn’t intend for it to be a week before I posted again. Sorry for the long silence. Every day has just been filled with stresses and pain. I haven’t really had any words. I’ve been so overwhelmed, exhausted, and crowded. Every once in a while I go off by myself for the quiet so I can relax, pray, and think. I can’t even begin to share the depth of this with you. I don’t even know how.

Zach and I have seen his pediatrician more in the past 2 ½ weeks than I think we did in the past couple of years. We were back again yesterday. He is having such a tough time with his grief plus he is having terrible stomach pain. Yesterday we were told that it is a combination of things. He is grieving so therefore he is stressed about that so his stomach is making more acid. Plus, he is stressed about understanding algebra and catching up. But also, he has a little acid reflux. So he is now on a double dose of Prevacid to see if that will help. We are praying it does. If not it will mean more test to check things out.
We are also trying to get Zach in with a Christian counselor. We feel that all of this has come to the surface with Lewis’ death. He has been trying to be such a grown up dealing with all the stuff that goes on with me. But it’s a lot even for me to handle, much less a 14 year old. So please be in prayer about us finding the perfect match to help Zach.

Becky is doing as well as can be expected. She has her ups and downs. We are dealing with that ourselves also. She has gone back to work full time this week. Sunday was 3 weeks since the accident. Please continue to pray for her, Bennie, me, Zach, and Lewis’ family. We are all learning each day how to live this new life without him.

Last Friday I had my drain injected, changed, and repositioned. This time he placed the drain back into my small bowel. I have had it like this before. It is very painful. I will just be truthful about that. Saturday the pain was so bad I stayed in bed until it was time to go to our great-niece’s 1st birthday party. Zach and I were walking down the basement stairs to go and the whole time I was thinking if I can just make it outside. Well, I did, just in time to throw up beside my car, then over the retaining wall, and then beside Bennie’s truck. Bennie had no idea that I was feeling that bad because he had been gone the whole morning taking care of some things. But I was determined to make it to little Lexi’s party. After all, she and Bennie are birthday buddies, born on the same day. Yes, Bennie’s birthday was on Sunday. Well, I made it there to the party and later that afternoon to the basketball fundraiser. We didn’t get back home until 12:30 that night. I was beyond tired and hurting. Yesterday my home health nurse came to change my PICC dressing and draw labs. Today I got the results…still low. So I will continue with the injections. Last night Bennie had to give it to me. He was shocked how much he had to injected. Today I haven’t gotten very much done. Between not feeling well and Zach texting me and trying to get his appointment with the “coach”. But I am hoping to get a few things done now.

I have another prayer request for you, please. Please be in prayer that God will give Bennie and I wisdom and comfort in the decision to go to Cleveland for this surgery. So much has happened in the last 3 weeks that it just makes me think about it and pray for God’s guidance and a sign that this is truly His will and the direction we should take. It is what I want most. This is all for His glory.

Tomorrow I have a doctor appointment and then something girlie…I am getting my hair cut. That always makes it a better day. I am getting a really sassy do. Hopefully it will work on me. I could use that little lift. The past 3 weeks have really taken its toll on me. I have had multiple people tell me that it is very evident. I am not able to hide things as well as I have in the past. I am just praying for “Sunny Days”.

Please take a moment and leave me a note on my guest book. You will never know how much it means to me and how much it brightens my day. Thank you so much!

Quote of the day:

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”

~ Ursula LeGuin

Verse:

Then Jesus said, “Did I not tell you that if you believed, you would see the glory of God?”
John 11:40

Tuesday, October 24, 2006 10:53 AM CDT

Sorry it’s been so long since I have posted. Each day is so full of stuff and things that need to be done to try to get all of our lives back to some kind of order. Today Bennie and I are going with Becky to give her official statement about the wreck. She is nervous about what they will ask her because she remembers very little about the wreck. She and I were talking about it yesterday. She doesn’t even remember Bennie and me being in the ambulance with her that night or me riding with her to the ED. So please pray for her today not only does she have to go through that but she is also trying to work half a day today. I told her as she left this morning to call me if she needed me and that if it got too much they would understand if she had to leave. It has only been 2 weeks.

Zach is still struggling. I ended up spending 45 minutes at the school with him yesterday morning just trying to talk him into toughing it out. What a hard thing to do. Because he said that he wasn’t feeling well and here I was trying to sort out what to do. It’s not easy being the mama. Zach did end up staying at school. Although he spent half the day with Queen. She was substituting for the Spanish teacher…no Zach doesn’t have Spanish. But he felt comforted being there with her. Also the librarian has been super great to Zach. Yesterday while I was there talking to him he told me he wanted to go home. Of course, I had to remind him about time for time. Then I jokingly asked if he would just rather be home schooled and he said yes. I told him that wouldn’t be a good thing because I wasn’t smart enough to teach him all that he needed to know. He’s just that clingy right now. I am proud of him though for making it through school and conditioning yesterday. He has already text messaged me to bring him some chap stick to school. I know he has chapped lips. But I also know that he just needs to see me. I will gladly go to that school every day if that helps my baby through the day. They are only children for such a short period of time. Every minute is precious.

Okay so I know you are wondering about me. These past 2 weeks have been incredibly hard for all of us. On top of that I have the every day issues of temps, low labs, low energy levels, and trying to be ready for Dec. 6th. Yesterday I got my second injection of Procrit. So far my blood levels haven’t started building. The injections have just slowed the fall down a bit. My levels are still low. One of the side effects of these injections is joint pain. Unfortunately, I am having trouble with that. I’m not sure how many more injections I can handle. I’m just hoping to see some improvement in my levels.

Friday I go back in to have my drain injected and changed out. This drain has given me trouble since the day after I had it changed (2 weeks ago). Two weeks ago when the doctor injected it he saw a fairly large fistula connected to the small bowel. He didn’t feel that they could adequately control it. So for the most part I just have to live with what it is doing and hope and pray that December 6th will be the day that prayers are answered. My prayer is to be able to be drain-free, feel good, have energy, and be able to eat whatever I want whenever I want. I want to be well enough for us to be able to go with Becky to Hawaii in the Spring. That is her plan, to spread some of Lewis’ ashes there. Because that was their dream, to go to Hawaii before they had children.

So the journey continues…the past 2 weeks have been heart achingly hard. We have been mentally, physically, and emotionally drained. Sometimes the next 5 minutes have been all we could focus on get through. Please continue to pray for our family and Lewis’ also. The Lord is good and only He knows the plans He has for us.

Quote of the day:

“Enjoy the today. It’s the only one that matters.”
~ Stephanie

Verse:

Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord, is my strength and my song; he has become my salvation.
Isaiah 12:2

Wednesday, October 18, 2006 3:47 PM CDT

The words still seem impossible to put together. Just days before the accident happened I had been teasing Bennie that in about 2 years he would be a grandfather. His answer was, “Yeah, Becky’s gonna do that for me.” We both laughed and thought about the joy of becoming grandparents. It was something that was right there. Now we are all struggling to put the pieces back together. Becky is doing remarkably well. She does have her moments though when it gets bigger than she can put her arms around. Little Zach is devastated. Him and Lewis had a great relationship. Lewis always took time with Zach. He would play video games with Zach even though he knew Zach would probably win. Lewis would rag Zach about him being able to win because he had all the cheat codes. They just understood each other and were truly brothers.

Becky has been sleeping in Zach’s room since this happened. We’ve had some much company that Zach has had to sleep on the sofa. Last night was the first night the bonus room wasn’t being used. So Zach said that he would see if he could sleep up there. I felt unsure about that. About 30 minutes to an hour later Zach came to our room crying his eyes out. He was so upset that he could hardly breath. So like many times in the past when he was a toddler he climbed in bed with us. It was a long night for us all. This morning he is moving slowly but trying to make it at school. We encouraged him to go so he doesn’t fall too far behind. I’m not sure if he will make it the entire day or not. We will see. Please pray for all three of our babies; Josh, Becky, and Zach.

Bennie and I (along with Josh, Alicia, Jay, Zach, and Sarah) have worked on packing up the duplex until last night Bennie and I were physically exhausted to the point of tears. We have both decided to take a break today. We still have stuff to take care of over there and of course clean up. Plus, we have to move several rooms around in our house to accommodate the changes. It will all work out though.

Sorry I had to stop for a while to run some errands for Becky and take her to the doctor. So now it’s afternoon.
On my front I am still struggling with high temps. Usually at night, but this morning I was running 101.4. It has since come down with the help of Tylenol. I received an email back for my doctor that takes care of my drain. He said that a week and a half ago when he injected the drain he saw a large fistula to bowel. He said that he could change out the drain again (did it last time) but he didn’t know if it would help any with the issues I am having to deal with. I’m not sure what we will do. I’m just trying to make it until December 6th.

Please continue to keep us all in your prayers. We certainly need it. We are all just overwhelmed. By the way, Zach made it through school. Although he did tell me that he tried to text me on a friend of his phone that he wanted to come home. But the text wouldn’t go through. Zach’s phone the battery is out. So he didn’t have that with him. But I told him he has the 1st day behind him now. He said that all of his teachers were very understanding and allowed him to go to the restroom whenever he needed to, to get away. Plus, his coach and the librarian were very good to him. I am so thankful for that.

After I share my quote of the day and verse I also want to share the lyrics to a song my Fairview buddy shared with me. Thank you so much for thinking of me and you know who you are. I love the song.

Quote of the day:

“Please just give me the grace to make it one step, one breath at a time.”
~ Stephanie

Verse:

Heal me, O Lord, and I will be healed; save me and I will be saved, for you are the one I praise.
Jeremiah 17:14

Artist: Mercy Me
Song: Bring The Rain

I can count a million times
people asking me how I
can praise you with all that I've gone through
the question just amazes me
can circumstances possibly
change who I forever am in you
maybe since my life was changed
long before these rainy days
it's never really ever crossed my mind
to turn my back on you, oh lord
my only shelter from the storm
but instead I draw closer through these times
so I pray

bring me joy, bring me peace
bring the chance to be free
bring me anything that brings you glory
and I know there'll be days
when this life brings me pain
but if that's what it takes to praise you
Jesus, bring the rain

I am yours regardless of
the clouds that may loom above
because you are much greater than the pain
you who made a way for me
by suffering your destiny
so tell me what's a little rain
so i pray

bring me joy, bring me peace
bring the chance to be free
bring me anything that brings you glory
and i know there'll be days
when this life brings me pain
but if that's what it takes to praise you
Jesus, bring the rain

holy, holy, holy
is the Lord God Almighty
Is the Lord God Almighty
And I forever sing
Holy, holy, holy
Holy, holy, holy
Is the Lord God Almighty

Tuesday, October 17, 2006 9:36 AM CDT

Good morning to all.

Thank you so very much for all of your emails, cards, calls, food, love, and support for us during this emotional roller coaster. Today we will be spending the day at Becky and Lewis' duplex to pack it up. Becky will be living with us for the next few months until Bennie finishes building her house. Plus, we want to keep her close to us.

I will post more later this afternoon or evening to catch you more up to date. Again, thank you for all of your love and support. Please continue to pray for our family and Lewis' because it is when everyone goes back to their everyday life that it truly hits you. Those quiet moments are the hardest.

I don't have a quote or verse right now because the family is walking out the door.....gotta run. Remember I'll post a real one later.

Tuesday, October 10, 2006 8:36 PM CDT

Thank you so much for all of your emails, notes, calls, love, and prayers. Our family fills you lifting us up. Today has been a very long, trying one. We went to the funeral home to make the arrangements for the service. All of Lewis’ family were there with us. Below I will leave the information about visitation and the services.

Memorial Service for Lewis Lee
Date: Thursday, October 12th
Time: Visitation 1:00, Service 2:00
Place: West Harpeth Funeral Home on Charlotte Pike

Memorial Service for Lewis Lee in Columbus Mississippi
Date: Saturday, October 14th
Time: Visitation 1:00, Service 2:00
Place: Antioch Baptist Church

Please continue to be in prayer for our family. On Friday we will leave to go to Mississippi for the Memorial service there on Saturday. When we return we will spend the next few weeks getting Becky and Lewis’ home packed up. Becky will be living with us at least until her house that Bennie is building for her is ready.

Quote of the day: my personal favorite especially at this time

“Life is not measured by the number of breaths we take…
But by the moments that take our breath away.”
~ Unknown

Verse:

Trust God from the bottom of your heart; don’t try to figure out everything on your own.
Proverbs 3:5

Monday, October 9, 2006 8:17 AM CDT

I’m not sure that I can even find the words to tell you this. Last night Becky and her husband Lewis were in a serious accident. Becky is physically okay, other than some cuts, bruises, and abrasions to the face from the air bag. Lewis was not so fortunate. He had massive internal injuries. We brought Becky home with us about 5:30 this morning. Poor Zach is devastated, as we all are. He was very close to Lewis. Please pray for our family and also remember Lewis’ family. The next week and there after will be some hard, emotionally times. May God reach down and just touch Becky’s heart and fill it with His love.

I’m sorry this is short but this is not the time for long posts.

Thursday, October 5, 2006 9:24 PM CDT

It’s been a wild and crazy week. Sorry it has taken me this long to sit down at the computer. Let me tell you all about it.

On Monday I got the results from Zach’s EKG. His doctor said that he had a low heart rate and he wanted me to take Zach to a cardiologist That afternoon. When we got to this new doctor’s office Zach was put through a few tests to check his heart, it’s function, and so on. The tests took over an hour and a half. Then we saw the doctor. Long story short, Zach is a very athletic teenager with a slower heart rate. The passing out deal, the doctor said that it was better that he did that while walking. But if in the future it should happen when he is running or exercising he will need to come back in to see her. She told him to increase his fluid intake from 2 quarts a day up to at least a gallon, plus add more salt to his diet. Zach was a little disappointed when she gave him a note to go back to conditioning. He was hoping for a day or two off. But mama is so happy and thankful that he is okay.

Tuesday I had 2 doctor appointments. They both went well. The first one was with my nutrition doctor. He basically said that I was looking pretty good and that we had to keep me well from now until surgery time.

Wednesday night I took Zach to youth. I got Becky to ride with me so I could do some errands while I waited for Zach. It’s always nice to have some company. Plus, I don’t really like to be out by myself at night. Anyway, not long after we dropped Zach off I got a call from Bennie. He had stayed home to relax. He was tired from a long, hard day working. When he called he could barely speak because he was in so much pain. He told me that his sister was on her way to pick him up. At this point she was closer to him than me. So Becky and I headed for the ED at my second home and waited for them to get there. We were concerned that he was having a kidney stone attack or worse, his intestines had twisted or ruptured due to his diverticulitis. As it turned out he has kidney stones. We finally made it home from the ED at 1:30 am. Today he is doing better. Thank goodness.

Tomorrow (Friday) I have to be back at the second home for a drain check and re-positioning. I had emailed my doctor that takes care of my drain to let him know that it was leaking from the insertion site plus it is very smelly. I told him I thought it probably needed to be re-positioned. He said that I was right. So hopefully by lunchtime tomorrow I will be rid of this smell. Please.
I also have to tell him that when I flushed the drain tonight it bled bright red blood. Not sure why it is doing that. But I’m sure I will find out tomorrow.

So, you see this week has been hectic. But not all about me. I am thankful though that we are all doing okay tonight. Praise you Lord.

It will be late tomorrow afternoon before I can post tomorrow. Because I have conscious sedation when they re-position my drain. So hang in there. I will let you know what is going on. Oh, and by the way, while you are waiting, how about leaving me a note on my guest book. Talk about brightening my day, oh yes.

Quote of the day:

“A firm faith in the universal providence of God is the solution of all earthly troubles.”

~B. B. Warfield

Verse:

And he said to the woman, Thy faith hath saved thee; go in peace.
Luke 7:50

Monday, October 2, 2006 12:00 AM CDT

Good Monday morning to you all! I am so glad to have made it through the weekend. It was a bad, bad one for me. During the night on Friday I started feeling bad. By early Saturday morning my temp had reached 102. I was a sick little girl. In the past once my temp reached 101 we raced off to the ED at Vandy. I have been there so much that I practically know everybody that works there. The last time my temp spiked like this I just stayed in bed in my comfort position, drank plenty of water, and took Tylenol. It took longer to get through it and feel better. But at least I didn’t have to be admitted into the hospital for the umptenth time. So this time I did the same thing. Today I am feeling better, not quite back to myself, but I will get there. The best thing, I didn’t have to stay in the hospital and get poked and prodded. But that’s enough about me.

The nurse just called me about Zach’s EKG results. He has to see a cardiologist this afternoon. His heart rate ranged from 52 to 78. So we will be back at Vandy this afternoon. I have to be there for me tomorrow. Anyway, you know me, I research everything on the internet. I am not going to worry about this until there is something to worry about. Because one article I read said that very athletic teens can have a resting heart rate as low as 50. So this is just a precaution. His pediatrician said that he just doesn’t want Zach to be in the middle of a game, pass out, and end up getting hurt. When I know more I will post it. Please pray for my baby. He has no idea that mama will be picking him up early from school. He is going to be so upset because he will be worried about having to do time for time to make it up. Hopefully if I talk to the office about what is going on they won’t make him. We will see.

I know this is short but I have to get ready to pick Zach up. I hope you all are enjoying some of this beautiful sunshine today.

Quote of the day:

“Love like there is no tomorrow.”
~ Unknown

Verse:

Beloved, if God so loved us, we ought also to love one another. No man hath seen God at any time. If we love one another, God dwelleth in us, and his love is perfected in us.
1 John 4:11-12

Friday, September 29, 2006 8:53 AM CDT

Gosh, I am so tired. Working on this freshman float along with my doctor appointments, Zach’s doctor appointments, TPN, and so on, I am just a whipped puppy this morning. Thankfully homecoming is today. Sorry I haven’t posted since Monday. But I will catch you up.

Monday was the start of this hectic week. I went to help on the float after school. At about 6:00 I still hadn’t gotten a call from Zach to let me know conditioning was over. So I went ahead to the school. I knew it couldn’t be that much longer. I talked to one of the other moms for about 15 minutes before her son walked back into the gym. You see they had been to Newton’s hill (which is more like a small mountain) to run. I found out that they were suppose to run it 8 times. They run up and then walk back down. Well, Zach was on his 6th time coming back down when he passed out. The boys told me that Zach went out cold and when he woke up he could hardly talk. Zach said that he remembers his knee buckling on him and he closed his eyes. The next thing he knew the coach was slapping him on the face. He said he couldn’t talk because his tongue was stuck to the roof of his mouth. Anyway, I was cool about it while I was there. Of course I filled him up with Gator-aide. We went to the float building and he did fine.

Wednesday morning I had a doctor appointment with my oncologist. I’ll tell you about that later. Wednesday afternoon Zach had an appointment for a physical. His pediatrician is not one to get out of sorts about something. He’s so calm. When he heard about Zach passing out and that he has never done that before, he ordered an EKG. He said that he wanted it done before the end of the week. Also, Zach’s heart rate is low for his age. It runs from 55 to like 65. It should be 70 to 80. So we went to Vanderbilt Children’s Hospital yesterday for an EKG. Hopefully we will find out today how it looked. If not it will be Monday.

Every night this week we have worked on the float until 10 or 10:30. Not getting to bed some nights until midnight. I have been a bad girl because 3 nights out of this week I have skipped my TPN. It was just easier to do that than lug that backpack around while working on the float. But remember I have been eating a little bit and I drink plenty. Tonight I will be back on. Oh, and I didn’t miss 3 nights in a roll.

The excitement for last night was that the seniors came to mess with the freshmen. They drove by multiple times and egged us. They hit the kids, some parents, and our cars. We finally had to call the police because we were worried about the kids getting hurt. The bad thing was we knew without a doubt who a couple of the seniors were. We are good friends with one of the boys parents.

I think it was a good lesson to our freshman though. They were pretty torn up about getting bombed like that. But anyway, the parade is today after school. Then homecoming tonight.

Back to my doctor appointment. Bennie and I had a good talk with my oncologist. He decided to wait to see me again after surgery. Then we can decide what needs to be done from there as far as starting chemo again. My tumors don’t seem to have grown. They are stable for now. My doctor wants to see some shrinkage though. So I see him again January 3rd.

Well, I need to stop here for now. I have a lot of catch stuff to do around the house. I hope you all have the most wonderful weekend. Please take a moment to leave me a little note on my guestbook. You know I truly look forward to your notes.

Quote of the day:

“God takes us into deep waters, not to drown us but to cleanse us.”

~ Author Unknown

Verse:

Show me your ways, O Lord, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.
Psalm 25:4-5

Monday, September 25, 2006 4:14 PM CDT

“How Great Is Our God“……. I am singing His praises.

Thank you all for being so patient for me to post and catch you all up to date about Cleveland Clinic and Dr. Church. Our flight up there went smoothly. The Cleveland Clinic Guesthouse was nice and the staff is wonderful. They truly cater to their guests.

Monday evening we decided to walk to the Digestive Disease Clinic so we would know where we were going the next morning. This place, Cleveland Clinic, is huge. They have buildings for every alphabet letter and are still building more. There are skywalks and carts everywhere. Vanderbilt seems so small now since we have seen Cleveland.

Anyway, the next morning we went to meet Dr. Church and his staff. Of course, the night before was like Christmas eve for me. I had a hard time sleeping. We ended up spending over 2 hours there. Dr. Church told us what he thought. He also asked me a few questions. The first one was what would I most like to take care of or what bothers me most. I thought about it for a minute. Then I told him that I guess it would be my drain. But I said that if (when) we take care of this drain then that should mean I no longer have any leaks so I should be able to eat. So basically by taking care of the leaks solves everything as far as the drain and being able to eat again. I admitted to him that I had been cheating a little bit with soft foods for the past week. He surprised me and said that he had no problem with me eating what I could tolerate (keyword tolerate). I am sticking with soups and mashed potatoes in small amounts. He also put me on a new medicine, Evista. I will take this along with Sulindac (I have taken Sulindac in the past). These drug together will hopefully soften the tumors. But you have to take them for at least 3 months to see results. That is why my surgery is scheduled for December 6th.

It will be hard to be away from all of you. Dr. Church said if all things go well then I should be in the hospital for a week. Well, I have already determined that I will be out in that week. Because my 20th anniversary is the 12th of December. Then there is Christmas to get ready for. Also on the 26th Zach’s basketball team will go to Panama City Beach for a tournament. I am determined to go there to see the games. So see I have goals. I always seem to do better if I have goals to reach for. But like I said it will be hard to be away from all of you. You have all been so wonderful about visiting me while I am in the hospital. So I kind of got spoiled. But as always, God is constantly answering prayer on this journey. I will have Bennie, Diva, and my sister-in-love there with me. Plus, Dive will keep you all up to date while I am there. We will also give you the address and all for Cleveland Clinic.

Before we went to see Dr. Church Bennie was concerned that it would turn out to be just like MD Anderson in Texas. There we flew out there only to have the doctor spend all of 5 minutes with us and tell us that I should keep on doing what I was doing. There was nothing he could do. What a let down. But I knew in my heart that we were suppose to go to Cleveland. It went smoothly and there is hope and of course, more than hope with all the prayers being sent up.

Please continue to pray for Dr. Church and his staff, also all the nurse that I will come in contact with. I pray that the glory of God will be very evident to all those around through all of this.

I also would like you to say an extra prayer for Bennie. Being the care partner to someone with a chronic illness is a very exhausting thing. Bennie is a fixer, so it is hard on him because he can’t do anything to fix this. I think it is harder most times for the ones that love us to have to watch us go through this tough stuff than it is for us to go through it, Because after a while the patient kind of knows what to expect (doesn’t make it any easier). So please lift him up in your prayers. God knew what he was doing when he brought us together. He is a wonderful man.

As Diva told you all I had my stent changed out on Friday. I ended up being there all day because I was so sick after the procedure and could seem to wake up either. I’ve just taken it easy this weekend trying to recoup. I did make it to SS and church yesterday. That truly picked me up. CRBC you are so loving and wonderful to me and my family. Thank you for loving us.

This week I only have one doctor appointment. I have to see my oncologist on Wednesday morning. Then that afternoon I have to take Zach to his pediatrician for his physical. Plus, this week is homecoming week for the high school. So we will be working on building a float. Sounds like lots of fun, doesn’t it? I’m just so thankful to be able to be a part of it.

Today I have been visited by home healthcare twice. One nurse came this morning to draw my labs. My PICC will flush but not draw which means I get to get stuck every week for labs. It kind defeats some of the purpose of the PICC. But I’m a tough gal. You know got those “Big Girl Panties” on. My second nurse came this afternoon to change my PICC dressing. She is the sweetest young thing. I just love her to pieces. She is pregnant with her first baby and just found out her baby is a girl. It was so neat because she called me to tell me right after she found out. I had guessed it was a girl. I am so excited for her. It was nice to visit with her today and catch up on baby news.

Oh, I almost forgot to share this with you. When Bennie and I had gone over to the clinic to walk the route to Dr. Church’s office he saw an article of an interview with Dr. Church. In the article he said quite a few funny things. I will share one today. He said that he has a mix tape he plays when he does surgery or a procedure. Some of the songs on the tape are “Do That To Me One More Time” and “Working In A Coal Mine”. Isn’t that funny?

Anyway, that is all for now. I know I will think of other things about Cleveland that I want to tell you about. Oh like riding the public transportation there….but that’s another post. Maybe tomorrow.

Words cannot express the emotions I feel for all of you. You lift me up daily and for that I’m so blessed. I really do feel “Sunny Days” coming.

Quote of the day:

“There is a great man who makes every man feel small. But the real great man is the man who makes every man feel great.”

~ G. K. Chesterton

Verse:

But I will hope continually, and will yet praise thee more and more.
Psalm 71:14

Tuesday, September 19, 2006 4:21 PM CDT

Hi everyone!

I only have a minute because there is only one computer that works here right now. Things went well today. But I promise to catch you all up to date as soon as I get home tomorrow. I will tell you this, last night I couldn't go to sleep because I was so excited about today. It was like it was Christmas eve...you know how as a child you get so excited about Santa coming that you had a tough time going to sleep? Well, last night was Christmas eve for me. I hope you all are having a great day. I miss you all. Please flood my guest book with notes. I look forward to reading them all when I get home.

Quote of the day:

"Today the Son is shining."
~ Stephanie

Verse:

Trust ye in the Lord forever, for in the Lord, Jehovah, is everlasting strength.
Isaiah 26:4

Monday, September 18, 2006 8:03 AM CDT

Good morning! Today is the day we leave for Cleveland. I just finished getting all my TPN stuff boxed up for the trip. Boy is it a heavy box. Anyway, I had wanted to post yesterday about the wonderful, blessed time I had at the retreat, the theme was “Once Upon A Time”. But like any other mom there was tons to do just to get ready for this trip much less all the other catch up stuff. Plus on top of that I spent most of yesterday afternoon not feeling well, running a 100.5 temp. So, I was in bed most of the afternoon. In the last week I have been eating little bits here and there, just baked potatoes mashed up really good. I’ve been so hungry since I had my transfusion. It’s like my appetite really woke up after that. So I am hungry all of the time. I mean growling stomach hungry. Bennie knew yesterday that I didn’t feel well even before I said anything. Because my classic signs are that I am cold and I want to lay down. But thankfully this morning I am doing better.

I don’t have much more time to post right now. You know I have to finish getting ready to leave. I am so excited. Please remember us in your prayers. I’m not sure if I will have access to a computer up there or not. If I don’t you know I will have Diva (Mama Julia) post on my guest book. By the way, feel free to leave me all the little notes you want on my guest book. I look forward to reading each and every one of them. I hope you all have a wonderful day!!!!!!

Quote of the day:

“Today is a new day.”
~ Unknown

Verse:

Every good and perfect gift is from above coming down from the Father of the heavenly lights, who does not change like shifting shadows.
James 1:17

Friday, September 15, 2006 1:33 PM CDT

Hi everybody!

I am so excited about this weekend and the trip on Monday to Cleveland. I have prayed and prayed that I would be well enough to be able to go to the retreat. Now we just have to pray me through the retreat. I have been busy today packing, had to go to Vandy to pick up my medical records and Cts, and all the other stuff that goes with being gone for a few days. I’ve got everything packed except for my camera. I can’t seem to find it. Maybe Bennie let someone borrow it. I was hoping to get some new pictures for the photo album this weekend. It’s time to have new ones on there. Maybe one of the other girls can email me what they take.

Well, I need to stop here for now. I will post either Saturday night or Sunday. I hope you all have a great weekend! Oh, but before you leave a quick note from you would be such a great surprise to come home to.

Quote of the day:

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.”
~ Thich Nhat Hanh

Verse:

Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18

Thursday, September 14, 2006 12:46 AM CDT

Yesterday afternoon I think I was the hungriest I have ever been while on TPN. I could have chewed my fingernails off I was so hungry. It was all I could think about. I looked through all of my cabinets for some kind of soup that I could strain. There was nothing. I couldn’t go anywhere because I was babysitting my great-niece (What a sweet baby!). So by the time Bennie got home that evening that’s all I could talk about. He decided to take us to Cracker Barrel. Now what I got isn’t a clear liquid…cup of potato soup. But remember I was starving. Plus, whenever I don’t feel good or just want comfort food I love homemade mashed potatoes. There’s nothing like that. It’s good to pep you back up. Anyway, I decided potato soup might be a safer bet. It only took about 4 spoons of it and I was nice and full. I also drank a lot of tea to try to make sure it got flushed back out. I didn’t need to get sick before this weekend or Monday. So far, so good.

Remember I posted about the weekend Zach and I stayed with my parents and how one night I had the worst calf cramp? Well, last night topped that. It wasn’t just one spot in the calf it was the entire calf. It hurt so bad that I woke Bennie up with my crying. I could hardly breath it was so bad. It wasn’t just one cramp and then it was over. It was wave after wave of cramps with just a few seconds between the next one. Today my leg is very sore. I’m not sure why this keeps happening to me. But I know it is something I hope doesn’t happen again. I just called and left a message with my nutrition nurse. So hopefully I will hear back from her shortly.

I was concerned about our flight to Cleveland and being able to take my TPN with us. As it turns out I should be able to pack it in an special box with some ice packs and check it. I’m glad that worked out for me. I didn’t need to go 2 nights without TPN. That would be bad. Just another prayer being taken care of.

I am still waiting for the call to go pick up the medical records and films I need to take with me to Cleveland. It would be nice if she called me today.

Well, that’s about it for today.

Quote of the day:

Like any other gift, the gift of grace can be yours only if you'll reach out and take it. Maybe being able to reach out and take it is a gift too.”
~ Unknown

Verse:

I will sing to the Lord all my life; I will sing praise to my God as long as I live.
Psalm 104:33

Wednesday, September 13, 2006 9:36 AM CDT

I was so excited yesterday that I couldn‘t sit still long enough to post. I got my appointment with Dr. Church yesterday!!!!!!! Yes, I talked to his nurse and at first she told me that he was booked through October. Then she asked me when I would like to come. I told her that I could come tomorrow. After looking for a minute or two she asked if I could come on the 19th. I asked if that was September, thinking it was probably October. She answered, “Yes, it’s September.” It didn’t hit me until after I hung up that that is next week…Tuesday! More prayers being answered is all I’ve got to say about that. God is so good. I feel good things ahead.

So now I have to get medical records and CT films together before Monday when we will have to leave for Cleveland. We have to leave on Monday because I have to be at the clinic at 8:45 am on Tuesday. I can’t wait! Anyway, they want me to bring all this stuff with me, not have it sent. So I will have to go back up to Vandy another day this week. But well worth it I’ll say.

Last night we booked our airline tickets and hotel. Thankfully (like with most larger medical facilities) there are a few hotels either attached to or within walking distance of the clinic. We are staying in the Cleveland Clinic Guesthouse. This trip is going to cost us about a $1,000. At first I thought, no, we don’t need to spend that kind of money. We don’t have it. But then I thought some more about it and realized this isn’t just blowing money for nothing. This is investing money in my health and future. Plus, prayers have been answered this far, everything will work out just fine.

The rest of this week is going to fly by between getting the medical records and CT films I need for Cleveland, going to the Women’s Retreat, packing for Cleveland, getting Zach and the animals taken care of, and leaving for Cleveland. I am so excited.

Please continue to be in prayer with us that the trip goes smoothly, that even right now God is preparing the hearts and minds of Dr. Church and his staff. Also, please remember to pray for Zach while we are away.

Don’t forget to click over to my guest book and leave a little “ray of sunshine” on this cloudy, rainy day.

Quote of the day:

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”
~ Helen Keller

Verse:

Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.
Romans 15:13

Monday, September 11, 2006 4:48 PM CDT

What a hard thing for a parent to have to do…

Bennie and I had talked months ago about talking to Zach to make sure he understood things. In the past we have done what most parents would, protect him from all of this. I have always been blessed to be able to put on a strong front for him. But Bennie and I got a real heads up with the last surgeries in May/June. We knew that we had to make sure that Zach took every opportunity to spend time with me and know that we all have to cherish every minute we have with each other. For none of us are promised tomorrow.
Bennie was able to talk with Zach on Saturday.

The top part of this post is from Sunday.

This part of the post is all Monday stuff. I had my transfusion on Friday. Everything went smoothly with that. Bennie was surprised when the nurse told him it would be 2 to 3 days before I felt better from the blood. He had thought it would be instantly. Well, today is Monday and I can honestly say that I feel a lot better than I have in months and months. This morning I went to meet with my surgeon to talk about things and of course Dr. Church. He told me he had the utmost respect for Dr. Church and that he had seen more FAP patients than anyone in the country. Just another reason why I believe this is the course of the journey. My surgeon told me that he wasn’t sure if the output of my drain is from leaks in the small bowel, the cystic desmoid, or a previous fistula that they tried to fibrin glue . I am hoping and praying that Dr. Church will be able to fix this. My prayer is to be drain free, pain free, and able to eat once again without problems.

Before I came home I had errands to run. I had to go by Walmart, or as my Pegram buddy likes to call it, Wally World. Until today I have had to make up my mind ahead of time exactly what had to be done because I had very limited strength, energy, and ability to do an entire list of things. But today was different. I picked up my stuff I needed…food and snacks for Zach, stuff he can fix himself. When I was walking out the door I still felt pretty good. I saw Bennie after I got home and told him that I could tell a difference today. I feel more clear headed and like my old self. At least my old self plus the accessory coming out of my stomach and not being able to eat. It is quite amazing what a little blood can do for a girl. The doctors have all been in hopes that over the last 6 or 8 months my blood counts would build back up on their own. I am so thankful they finally made the decision to do another transfusion.

Having this clear head, the sun shining so brightly today, and the hope and faith that Cleveland Clinic is the next step makes all the difference. It helps to make the journey a little easier to take. This afternoon I decided to call Dr. Church’s office myself to make an appointment. Anyone that knows me knows that I just hate to wait if I think I can take care of something myself. A good example, going to medical records to get my own copy of my CT scans so I don’t have to wait for the doctor to call me with results. Anyway, I called, his nurse was not in today. But I was able to leave her a voice mail. I told her who I was, that my surgeon had spoken to Dr. Church about me last Friday, and that I was anxious to set an appointment with Dr. Church. Hopefully she will call me tomorrow. Next I found out that Southwest does fly to Cleveland. We had thought we would drive, that is until Bennie saw how far it is to Cleveland. As you can probably tell I am ready to head up there… tomorrow.

I don’t have anymore doctor appointments this week. My home healthcare nurse will come in the morning to change my PICC dressing and draw labs. She has to draw labs every week so my nutrition doctor can make adjustments to my TPN if necessary. For the rest of the week my biggest thing is to stay well so I can go on the Women’s Retreat this weekend. We leave Friday afternoon and get back Saturday afternoon. Not a big deal for most people. But for me it means staying healthy, fever free, and packing up my TPN and supplies. All well worth it though to be able to fellowship with this group of women. I am looking forward to the time we will spend together. A time to share and be strengthened. Please pray that the Spirit will move in a mighty way, and that He will have freedom to work in the lives of every one there.

Thank you for your continued prayers, emails, notes on my guest book, calls, and so much more. Your love and friendship is a precious gift to me. Thank you for sharing it so freely with me.

I am ending today’s post with the lyrics to “How Great Is Our God” by Chris Tomlin. This song is so powerful. It moves me to tears. Everyday I listen to this, preparing my heart and mind for the journey ahead.

Quote of the day:

“Faith isn't faith until it's all you're holding on to”
~ Unknown

Verse:

For we walk by faith, not by sight.
2 Corinthians 5:7

How Great Is Our God by Chris Tomlin
VERSE(1):
The splendor of the King,
Clothed in majesty
Let all the earth rejoice,
All the earth rejoice
He wraps himself in light,
And darkness tries to hide
And trembles at his voice,
And trembles at his voice

CHORUS(1):
How great is our God,
Sing with me
How great is our God,
and all will see
How great, How great
Is our God

VERSE(2):
Age to age he stands
And time is in His Hands
Beginning and the End,
Beginning and the End
The Godhead, Three in one
Father, Spirit, Son
The Lion and the Lamb,
The Lion and the Lamb

CHORUS(1)

CHORUS(2)
Name above all names
Worthy of our praise
My heart will sing how great
Is our God

CHORUS(1)

Thursday, September 7, 2006 4:31 PM CDT

I’ve been silent since Zach and I got back from my parents’ house. Silent, waiting for the words to come. Sometimes it takes patience to just wait knowing you are all waiting also. Today…this afternoon the words flooded me. So here goes………

In the past, even recently, I have worried whenever I would get down or start to pout because I couldn’t eat or cry because it was just too hard living each day, I worried that my faith was not strong enough. I thought how can you be like that and have a strong, believing faith. But I realized today that our human nature, the way we push and strive to be “well” is the reason we go through those cycles. That is a part of becoming stronger in our faith. When you fall to your knees crying and ask God to please take it away you pull closer and gain that comfort that is needed to take the next step, even the next breath. God knows us better than we know ourselves. He understands us and loves us. He already knows we will have those days and He is right there just waiting to comfort us.

You just don’t know what a huge comfort those thoughts were to me today. I have really struggled with that. I won’t doubt my faith and the strength He gives me.

This week has been a busy week for me. Wednesday I had to go in for them to check my PICC out once again, problems with it. I also had to have my blood typed and matched for the transfusion I will be having tomorrow (Friday). Today I went in for a CT scan so we can see how things look. Then tomorrow I will be at Vandy for at least 6 hours for the transfusion. They have to infuse the blood slowly and also monitor me closely. But hopefully by tomorrow night I will be feeling much better, no more rapid heartbeat (like it’s coming out of my chest) or light headedness when I get up too quickly. Then on Monday I see my surgeon to discuss my CT scan and the report. Plus, I am hoping he will have spoken to Dr. Church by then. I am ready to pack my bags for Cleveland.

My Alabama buddy emailed me the interview that was on the 700 Club with Dr. Church. I was in tears as I read it. I believe this is where we are suppose to go. So I ask you to please be in prayer for our trip, Dr. Church, and his staff there.

Please remember to leave a note on my guest book, let me know you’ve been by, and just brighten my day. Your notes and emails are an incredible strength to me, more than you’ll ever know.

Today I am ending with lyrics to “Indescribable” by Chris Tomlin.

Indescribable, uncontainable,
You placed the stars in the sky and You Know them by name
You are amazing God
All powerful, untamable,
Awestruck we fall to our knees as we humbly proclaim
You are amazing God
You are amazing God

Incomparable, Unchangeable,
You see the depths of my heart and you love me the same.
You are amazing God

Quote of the day:

“On days when life is difficult and I feel overwhelmed, as I do fairly often, it helps to remember in my prayers that all God requires of me is to trust Him and be His friend. I find I can do that.”

~ Bruce Larson

Verse:

How lovely is your dwelling place, O Lord Almighty!
Psalm 84:1

Friday, September 1, 2006 4:33 PM CDT

I had to share this with you. I think it is the neatest thing. It just kind of comforted me and let me know that everything is going to be okay.

I have been packing mine and Zach’s stuff for the weekend. Of course, my stuff takes a little longer, all the TPN and supplies that go with it. I am having to take all of this down to the car in multiple trips. The neatest thing happened on my first trip down. I put my TPN box into the car and turned around. When I was putting it into the car I had seen a butterfly flying around just above my head. As I turned to go back upstairs the butterfly landed right in front of me on the driveway. Well, you know the little girl in me bent down to try to get the butterfly on my finger. She touched my finger and then flew up, around me, and then landed beside me on Bennie’s trailer. I turned and tried again to get the butterfly to climb onto my finger again. Surprise, surprise, she climbed right on. I stood there with her on my finger just checking me out for 10 minutes. She was close enough to me that I could see the velvety looking stuff on her back. Then she flew off and flew circles around me before she was out of my sight. Is that not the neatest thing? I think so. What are the odds of that ever happening? Just another little blessing from above.

Okay so I guess I have to catch you up to date with the medical stuff. No, I haven’t heard from Cleveland yet. Patience. But I did talk to my endocrinologist. He had spoken with my nutrition doctor and they decided my blood just wasn’t going to get to the levels it needed to without some help. So I have to have a transfusion of 2 units of blood next week. He told me that this may just be a short term help since I had a few transfusions in the last 6 months. Each time my labs would look better for a short time. But they always seem to drop again. I am looking forward to the transfusion so it will pep me up a little bit.

Diva and Big Daddy are the best. They went to the Red Cross today to donate blood for me so I wouldn’t get some stranger’s blood. Thank you so much for doing that for me. I can’t wait to see you both this evening.

That’s all for right now. I might not post again until Monday night. I am going to have fun with my parents and Zach. I hope you all have the best weekend.

Quote of the day:

“All you really need is the One who promised never to leave or forsake you -- the One who said, ‘Lo, I am with you always.’”

Verse:

As one whom his mother comforted, so will I comfort you.
Isaiah 66:13

Thursday, August 31, 2006 8:35 AM CDT

Everybody is loving that the name of this new doctor is Dr. Church. I think it’s great also. Plus, since I have already met him, that’s just icing on the cake. Bennie and I were talking about going to Cleveland the other day and he said to me, “Stephanie, you know they might not be able to do anything.” I told him that I had to hold on to my hope and belief that this is where the journey is leading us. I just feel it is right.

Yesterday I saw my nutrition doctor. They all said that I looked so much better than the last time I was in. Of course, the last time I was in they had to admit me into the hospital. I told my doctor that I was licking chips (just like the last time I was on TPN, anything for flavor). They laugh every time about me doing that. He said that he understood. He said what I am doing is very hard and you have to do what will help you get through it.

My weight has finally creped up to 101. My doctor decided to increase my TPN calories and protein to help me gain weight and also build my muscle tone back up. I talked to him about Cleveland Clinic and Dr. Church. He knew Dr. Church and actually trained the nutrition team up there. He told me he thought it was a smart move to go there. But he also said that there was no guarantee Dr. Church could help. Then we talked about the possibility of me being on TPN for the rest of my life because of short bowel syndrome. That would be if they decide to do surgery again and pull up an ileostomy. But if they could fix the leaks and do that then at least I would be able to eat again. I would have to be on TPN for all of my nutrition because the food I ate would not stay in me long enough to provide that. But hey, I could do that, as long as I get to eat. Yeah, I could do that.

After nutrition I had to go to PICC services so they could check out my PICC. They believe it is mechanical phlebitis, plus my lines wouldn’t draw. So I had to have the clot buster stuff (TPA) again. Which meant that we had to stay another hour while it did it’s work. After the hour the lines drew blood just fine. Then we were off in a flash because it was time to pick Zach up from school. He had an orthodontist appointment. So we rushed there. After that I had to take him to the chiropractor (his Godfather) to have therapy on his thumb that he hyper extended. Then we finally made it home.

Today I am all alone. Zach is at school and Bennie left last night with some of his family to go to Savannah, GA to see their grandmother. It makes me a little nervous to be here…you know just not wanting anything to happen medically while he is gone. He would beat himself up over that. Zach and I will stay here until Friday evening. Then we are heading out to Big Daddy and Diva’s for the weekend. We are really looking forward to that. I know Zach needs some time with them as much as I do. I can’t wait. Hey, but don’t think I am missing church on Sunday. I am planning on being there for at least church.

I hope you all have the most wonderful Labor Day weekend. Take time to enjoy the simple pleasure of spending time with your loved ones. God bless you all!

Quote of the day:

“If God brings you to it, He will bring you through it. Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.”
~ Unknown

Verse:

Trust God from the bottom of your heart; don’t try to figure out everything on your own.
Proverbs 3:5

Tuesday, August 29, 2006 10:24 AM CDT

I have been doing a lot of praying and research into where I (we) am going to go. After many prayers and tons of research I have decided on going to Cleveland Clinic in Cleveland, OH to see Dr. James Church. He specializes in FAP patients. Diva and I actually met him a few years ago in San Antonio, TX when we went for a Hereditary Colon Cancer conference. Cleveland Clinic ranks second in the nation in the “2006 Best Hospitals”.

I called Cleveland Clinic yesterday to see what all the doctor would need to make a decision if he could help or not. Then I called my surgeon’s secretary to talk to her about it. Later my surgeon called me to joke with me that he heard I had fired him today. I laughed and told him no that he was still the captain of the team. I was just drafting in another player. Then we talked for a while and he completely agreed with me going to Cleveland. He said that he would call Dr. Church personally and talk to him about me. I truly believe this is where God is leading us. I told my surgeon yesterday that I would like to be able to live without a constant drain and also be able to eat. He told me that he wanted those things for me also.

Now I just have to be patient until Cleveland gets all the information and can make me an appointment. The sooner the better. I’m “Praying for Sunny Days”.

Mornings are pretty slow for me. I don’t disconnect from my TPN until 10:00. So I usually just lay around until then…I know lazy bones. I just don’t feel very good in the morning. But by about 11:00 I start perking up.

I have to leave in about 15 minutes to go to see my nutrition doctor. After that I have to go to PICC services so they can look at my PICC. My arm is still very sore all the way up into my armpit. So they will check it out. It is probably just mechanical phlebitis, my arms are tired of having PICCs in them. We’ll see. After that I have to pick Zach up from school to race to the orthodontist. So this will be a very full day for me. I will let you know what the doctor says today and also as I know more about Cleveland. Please keep us in your prayers. Also pray for the doctor in Cleveland.

Quote of the day:

“The stars may fall, but God's promises will stand and be fulfilled.”

~ J. I. Packer

Verse:

“On the mountain of the Lord it will be provided.”
Genesis 22:14

Friday, August 25, 2006 10:21 AM CDT

This morning I am very tired. I had to go to the ED at Vanderbilt last night and didn’t get back home until midnight. No, no, this time I wasn’t the patient, which felt quite strange, but good. I had to take my baby girl, Becky, because she fell and hurt her arm. We were afraid she had broken it by the way it popped when she fell. But thankfully it is only a sprain. She has to wear a sling. Basically it’s the same treatment if you have a sprain or a fracture. Anyway, we are so happy she didn’t break it.

I am about to go to her house to pick her up so she doesn’t have to spend the whole day alone. Hopefully I will be able to take her mind off of her arm and we can enjoy some girl time together.

I am still keeping an eye on my left arm. The one that has the PICC in it now. I got it placed in that arm on Monday and it is still quite sore and has radiated up my arm. I will see what the home healthcare nurse thinks on Monday.

I hope you all have a beautiful weekend. I plan on it.

Quote of the day;

“A picture is being painted, for me…If I saw the pattern in advance, a sort of schema for ‘paint-by-numbers,’ that would leave no room for faith.”
~ Phillip Yancey

Verse:

We are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
Ephesians 2:10

Wednesday, August 23, 2006 3:42 PM CDT

As you all know I spent Monday afternoon at Vanderbilt. I had been having trouble with my PICC line for the past week. Usually when you get a PICC it is sore for a few days. But as the week went on my arm was hurting from my elbow all the way up to my armpit. It hurt to move my arm. My home healthcare nurse had told me if I started to have problems with the PICC not to run my TPN. Of course, this got worse over the weekend. So I didn’t run my TPN for 2 nights, no nutrition. I quickly lost down to 97 lbs. Not good at all. Monday the PICC was changed to the other arm (my left). I have always had it in my right arm and that arm is just tired. When they took the PICC out the area underneath the dressing was hard and swollen. So for the past few days I have had 2 sore arms. But this will get better and at least I am able to have my TPN. That’s a good thing since I have to see my nutrition doctor on Tuesday next week. Hopefully I will pick up a few pounds between now and then

Today I got a call from my primary care doctor’s nurse. She said that my endocrinologist (who is in the same office) had been keeping an eye on my labs that had been coming in. He was concerned about me staying anemic for such a long time. So he has ordered a bunch of extra labs to be drawn on Monday to try to figure out what the problem is. That will be so great to get that worked out so I’m not exhausted all of the time. I am thankful for his concern. It feels like somebody at Vandy is on my side. The “Get Stephanie Better” side.

I am doing some research to find out more about doctors that specialize in bowel preservation. I am thinking we will probably go to either Huntsman Cancer Institute in Salt Lake City, UT, Cleveland Clinic, or Mayo Clinic. This isn’t to say I have lost faith in my group of doctors here. I haven’t. But in the quest to be able to live a life without an always present drain hanging from my side, feel better, be able to eat, and so on, I feel it is in my best interest to find out what my options are. If any of you have any information about any of these places or doctors would you please share it with me. I don’t want to be far from home, family, and friends. But it might be time to pull up those “Big Girl Panties” and march forward. Standing in the same spot won’t get me where I want to be. Please be in prayer with me about this.

As you all know, in a family what affects one affects all. This journey wears on all those around me. The past few days have been very heart wrenching. Bennie and I have spent a lot of time talking and just sharing our feelings and fears. This is one thing that is so wonderful about our relationship. We are each other’s best friend. I want to ask that you pray for Bennie, Zach, and me that God will show us the way we need to turn to get to “Sunny Days”.

I know I have told you before, but I can never say it enough, your never ending prayers, love, and support are a constant source of strength to us. Thank you more than any words can express. I am blessed everyday by each of you.

Praying For Sunny Days by Hyperstatic Union (just a small part)

Rain, rain go away, I have faith that you won’t stay
I don’t care what doubters say, sunny days will come my way
Then the birds come out to play by the light of one sun ray
Now I kneel me down to pray, please God give me sunny days

Chorus:
Praying for sunny days to return to me
Seeking the warmth of the solar rays
I’m not just seeing the grey skies in front of me
Praying for sunny days

Please keep your emails and notes on my guest book coming in. I really enjoy those little happy gifts.

Quote of the day:

“Be thankful for the least gift, so shalt thou be ready to receive greater.”

~ Thomas à Kempis

Verse:

When I said, "My foot is slipping," your love, O Lord, supported
me. When anxiety was great within me, your consolation brought joy
to my soul.
Psalm 94:18-19

Saturday, August 19, 2006 6:03 PM CDT

I am so thankful to be back in my home once again. Thank you for your continued prayers. It has been a tough road to travel. But hopefully we are taking baby steps that make a difference. I know it is early on in TPN but I know this is what I should do and I am at ease with this decision. I can have clear liquids. So that is a huge blessings. I will have another CT scan in 3 weeks to see how things look. Then see my surgeon the next week. Hopefully we will see a huge improvement in the size of the abscess and the amount of the drainage.

Now I have to catch you up on the past few days in the hospital. Tuesday morning I had the appointment with my nutrition doctor. I had been struggling with fevers for the past week and they had finally gotten up as high as 101.4. So Bennie and I went in prepared to stay and loaded for bear. We felt like we have been swimming and swimming only to get in the boat and see that we are still where we started. We wanted some action.

My nutrition doctor later told me that when he saw how I looked and the fact that I didn’t fight him about being admitted, he knew that is exactly what needed to happen. The only problem, like always, was the hospital was full. We would have to wait for an empty bed. They were so sweet to me they got me a blanket and pillow and told us we could stay there until they had a bed for me. We began the long wait. Finally at about 12:45 Bennie had to leave me there to go to a meeting. We had been there since 10:15. Bennie didn’t feel he could postpone this meeting because he had done that last week when he had to take me to Vandy to have the drain changed out. Anyway, I lay there in that room, feeling so bad, just wanting someone to make it all better. When I am like this my prayers are usually, “Please God.”. That is all I can get out. But on this day I felt so discouraged by how things looked that I began to pray. “God, please, do not forsake me. I know I am a child of Yours and that You love me. Please help them to be able to fix me and make me better.” My spirits were low.

As I lay there my hope was that I would get a room on 9 South. Of course, there was no telling where I would be because the hospital was full. Odds were that it wouldn’t be 9 South. By about 2:15 I had a room and guess what? It was on 9 South. Prayers were being answered. My next thought was that I would get to see “Glorious Gloria”. I knew God was working. Prayers were being answered. She is such a gift and I am so thankful God brought her into our lives. What a wonderful woman of God.

When I got up on 9 South I asked about Gloria. She usually works during the week and has every Sunday off. The nurse told me Gloria was off. Her son had just gotten married last week. So I thought to myself that was okay. It would be alright. In my heart though I really had hoped to see her and be able to share some time with her.

Now this part is kind of crazy. I was in my room by myself. Bennie had some stuff he had to take care of. And I’m a big girl. My nurse comes in with a new nurse she was training. She told me that I was scheduled to have a PICC line put in at 5:00. But there had been a cancellation at 4:00. If I felt up to walking I could go ahead. Then she tried to tell the other nurse how to get to PICC Services. The new nurse was confused so I piped in that I knew how to get there. I was thinking I could easily show her. Then this is shocking. My nurse told me that’s great I could walk on down….by myself!!!! Never had that happen before. It was quite strange.

Needless to say, the girls in PICC Service were surprised. They couldn’t believe I came down by myself. Anyway, I got all set up to have the PICC put in. It’s like a mini surgery, at least the set up. I thought the girl that was doing mine had done it before. If she was the same one she had had trouble before getting mine in. Guess what? It was the same girl and she had trouble this time too. First she gave me the numbing shots. But she didn’t give it time to take effect. She went right to sticking that PICC into my arm. In case you don’t remember from my past PICCs, the line goes from the elbow area, up the arm, across the shoulder and chest, and stops right above the heart. This was not a good experience for me. I cried and cried while she was doing it. It just hurt so bad. Even today (Saturday) my arm is still sore and that’s been 5 days.

After having that done I had to drink the nasty contrast to get ready for my CT scan. I waited the hour and then had the scan. The next morning they also did an abdominal x-ray. We found out that the drain wasn’t in the right position, once again, and the abscess was bigger. So, I had to go down to have the drain changed out to a larger one and advanced deeper. Thankfully this larger drain is still one of the flexible ones.

This takes us up to Wednesday. I still haven’t seen Gloria. But things changed today. Gloria was working. As soon as she found out we were back again she came straight to my room. She was such a blessing. She always has such uplifting stories to share with us. She is just such a Godly woman. Now before I go on, do you remember my prayer while I was waiting for a bed? “God, please, do not forsake me. I know I am a child of Yours and that You love me. Please help them to be able to fix me and make me better.” Well, Gloria grabbed my hand (not even knowing the prayer I had said) and looked into my eyes and said, “God says, ’If you suffer with me. You will reign with me.’” Well, you know that brought on the tears. God had spoken to me. He had answered my prayer right there in that room through Glorious Gloria.

Gloria came back later to see us and prayed with us, a very special prayer that included even my doctors. She later laughed and told me that when she saw my surgeon in the hall she was going to touch him. I am so blessed to have this woman in my life. Thank You, Lord for always knowing.

As you already know I got to come home Wednesday afternoon. I am back on TPN with clear liquids. This will be for at least the next 4 weeks. Lets pray that this will do the trick. Even though I can have clear liquids it is still hard. You always want what you can’t have. One day though I will eat again.

You continue to lift my spirits with your emails and notes on my guest book. Thank you for continuing to pray for my family and me. We are all blessed by your love and support.

Just an extra note. My sister-in-love suggested I put a link on my website for my necklaces. I am working on this. We’ll see. All money would go to pay my health insurance, doctor bills, and hospital bills.

Quote of the day:

“Courage is grace under pressure.”
~ Ernest Hemingway

Verse:

For the Lord your God goes with you; he will never leave you nor forsake you.
Deuteronomy 31:6

Monday, August 14, 2006 6:02 PM CDT

Tomorrow is my appointment with my nutrition doctor and I am a little apprehensive about going. If things are like they are today, tomorrow then he will probably admit me. So I will pack a bag in the morning to be prepared. I hate to be there without my stuff.

I have been running a low grade temp for about a week at night. Last night it went on up to 101.2 and today it has been 101.3. It really makes me feel bad. Plus, I smell my drain. It drives me crazy and makes me feel a little nauseous also. I ask everyone I am around if they smell it. But everyone says no. I’m just paranoid. I have it wrapped up in a Bounce sheet and then sealed off with Gladd Press n Seal. That’s good for a laugh.

A lot of stuff has been going on. But I have just felt so bad. I wasn’t up to posting. A couple of days after I had the drain changed out I was still hurting pretty bad. Not the deep stabbing pain inside. But at the opening and slightly inside. So Bennie and I decided to change the bandage to check things out. Let me tell you, it was bad. I have had to have the silver nitrate many times in the past to burn away the granulation that happens with drains. But even Bennie said it was a horrible burn. It is wider and deeper than any I have had in the past. So that explained the pain. It will take some time for this to heal. In the meantime I am praying so hard that it doesn’t granulate more.

As any of you know that have had to deal with chronic illness it is tough on a family. We have been so blessed. I say blessed because one of the things that happens when you have a chronicly ill person in your family is from time to time you have those hard, cry your heart out days. Days when it just gets to be more than you feel you can handle. The blessed part here…Bennie and I always seem to be able to be strong for the other when that happens. We usually aren’t down at the same time. So that in itself is a huge blessing.

We are both very ready to have these leaks heal in my small intestines and be free of the ever present drains. That will be such a blessing when it happens. I will have the biggest smile on my face when I am done with these drains.

Oh, and to everyone that missed seeing my “smiling face” at CRBC I actually tried to come to church. I woke up not feeling very well but was determined to go. We all got ready and walked out to leave. Only to find out my car wouldn’t start. The battery was dead because Bennie had left my lights on the night before. In his defense the lights on his truck automatically go out. So he’s not use to having to turn lights off. And of course, he had parked it behind all the vehicles. So we couldn’t even take something else. They were all blocked in. Anyway, we had to call roadside assistance because my battery is in the trunk and the trunk wouldn’t open. That took a while. But we are running once again. You just gotta laugh. Those things happen.

This is to my “Sunshine State” buddy (Donna), thank you so much for the beautiful cross. I have it in my family room so I can see it all the time. You are the absolute best.

Uncle Don and Aunt Vera thank you so much for the cd. What a comfort to my heart and soul it is. You know how much I love music. Can’t wait to see ya’ll.

The biggest thank you goes out to each and everyone of you that remember faithfully to pray for my family and me. We walk this journey one step at a time together.

Quote of the day:

“In the total expanse of human life there is not a square inch of which the Christ, who alone is sovereign, does not declare, "That is mine!"”

— Abraham Kuyper

Verse:

For we walk by faith, not by sight.
II Corinthians 5:7

Friday, August 11, 2006 9:52 AM CDT

It’s been a very hard week. I got hit with a bunch of things all at once. The drain got to the point that it hurt to move at all. So I walked like a 100 year old woman. Then I caught a gastrointestinal virus. That in itself usually puts me in the hospital. On top of all of that I got thrush in my mouth and down my throat. The weight I fought so hard to gain plummeted to 97. Not good at all. I talked to my interventional radiologist’s nurse on Wednesday and told her what all was going on. Her answer was, “How soon can you be here?” So, I spent the afternoon at Vandy. I was so dehydrated that they gave me a bolus bag of fluids and kept them going the whole time I was there. While I was there they changed my drain out to a smaller more flexible one. When they took me back to the procedure room I told them they were going to have to put me out before they touch the drain at all because it hurt so bad. That was the best feeling in the world at the moment…drifting off to sleep. When I woke up the doctor told Bennie and me that the other drain wasn’t in the abscess like it needed to be. Probably do to the time I got it hooked on the dishwasher shelf and accidentally yanked it. I almost passed out. Plus the area around the drain was very granulated. So she use silver nitrate to burn away the granulation. I am still very sore and moving slow. But hopefully in a few days it will ease up.

Sorry I have left you all in the dark. It was just all I could do to breath sometimes. But even though today is a rainy day I am “Praying for Sunny Days”. I’m ready for some better days. I hope you all have the best weekend. Your notes on my guest book and emails have been such an uplifting joy to me this week. Thank you.

Quote of the day:

“The value of consistent prayer is not that He will hear us, but
that we will hear Him.”

~ William McGill

(Thank you #15 for that quote. I love it.)

Verse:

Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:4

Monday, August 7, 2006 12:20 AM CDT

It has been almost a week since I posted. Some of you already figured out that I am having a tough time. Sometimes the pain, trying to take care of every day things, lead a “normal” life, all while traveling this journey is so heavy on a person’s shoulders and also on a family. One of my favorite songs right now is No One Else Knows by Building 429. The words bring heart ripping tears to my eyes…”My world is closing in on the inside, but I’m not showing it, when all I am is crying out I hold it in and fake a smile, Still I’m broken, I’m broken. Only One could understand and only One could hold the hand of the broken, of the broken.”. I feel those words with my soul.

Please be patient with me. I will post more later. Please keep me in your prayers. Also, please remember that your emails and notes on my guest book are like little rays of sunshine straight to my heart. Thank you for caring.

Quotes of the day:

“If it wasn’t a true trial, it wouldn’t be a true faith.”
~ Rev. Bobby Price Homecoming service at CRBC 08/06/06

“God didn’t save you from something. He saved you for something.”
~ Rev. Bobby Price Homecoming service at CRBC 08/06/06

Verse:

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10

Tuesday, August 1, 2006 2:01 PM CDT

I am back from the appointment with my nutrition doctor. He wants to see me next week if I haven’t gained weight. He told me someone from his office will call me before the end of the week to check on me and my weight. He said that he was very concerned about my weight loss and that it needed to be watched closely. He said that I had made it through too much to have this bring me down. So, on the way home Bennie stopped and fed me lunch and said that it will be milkshake time this afternoon. You know everybody I talk to says the same thing, “Oh, I wish I had that problem.” But really you wouldn’t because my trouble is more than just eating. It’s being able to eat enough to add pounds. Although, I think I can tell a little bit of difference today at lunch. Lunch actually tasted good. Part of that is because my surgeon told me to stop taking the Flagyl. That was keeping my stomach so upset, crampy, and gurgly feeling that nothing sounded or tasted good. So, maybe today is a turn for better days. That’s how I am going to look at it.

For the rest of this week no more doctor appointments. Yippee. Well, sorry this post is so short. But I have mama stuff to take care of. Like Zach and me going to the grocery store for…ice cream.

Quote of the day:

“Never give up. God’s timing is perfect. As my buddy, Queen says, ‘He’s never too early. But never late.’.”
~ Stephanie

Verse:

For He shall give His angels charge over thee, to keep thee in all thy ways.
Psalm 91:11

Monday, July 31, 2006 10:40 PM CDT

We got back from seeing my surgeon earlier. The word is to keep this nasty ole drain for 3 more weeks. Then get it changed out to something a little more comfortable than this one. He also said that I have to put on some weight or else he will put a feeding tube in my nose. I asked him why it would be that and not another PICC line for TPN. He said that there is such a risk for me to get another line infection that the nose tube would be better. But I had him check the results of my PICC line culture and it was negative for infection. So he said that I would have another PICC line if my weight didn’t pick up.
Overall it was a good appointment. Just still a “wait and see” mode though. More of that practice in patience.

In the morning (Tuesday) I have an appointment with my nutrition doctor. You know it would be great if all of these doctors would be in their clinics on the same days. That way I could see them all in one trip to Vandy. But, no, they all see patients on different days. So another trip to Vandy tomorrow. We’ll see what he has to say about my weight. I’ll let you know.

Would you please add this to your prayers. Bennie has found out that he has diverticulitis. Not sure about that spelling. He has had quite a bit of trouble with it and will most likely have to have surgery eventually for this. The thing he said today is that he needs to know I am okay before he can go through something like that. That wouldn’t be a good thing if we were both in the hospital at the same time, huh? So please remember him in your prayers.

Also, my baby, Zach, starts high school this Friday. Please pray for mama and Zach. Zach, I know, will be just fine.

Okay, so two more prayer requests. For my dad, who you all know I call Big Daddy. He will be having surgery on his knee next Tuesday. Also pray for Diva, my mother.

Well, it is way past bedtime for me. So I will stop here for now. Love and joy to you all.

Quote of the day:

“Because I’m overjoyed…overjoyed…overjoyed in You.”
~ chorus to a new song by my friend, Thomas Payne

Verse:

My lips shall greatly rejoice when I sing unto thee; and my soul, which thou hast redeemed.
Psalm 71:23

Sunday, July 30, 2006 4:13 PM CDT

Yes, today is my favorite day and I got to go to church. So today has been a wonderful day. On top of that the sun is shining and the clouds are those pretty puffy white ones I love so much. As a little girl I could just imagine falling back into them and bouncing. That’s how I am feeling today…I’m bouncing back up from my Father’s gentle hand.

I have to explain better what I shared yesterday. I posted that I miss eating for the joy of it. Some of you might be confused, wondering, “Isn’t she eating? I thought she got her birthday prayer.” And you are right. For that I am so thankful. But part of starting to eat again after 8 weeks of TPN is reintroducing the digestive tract to working again. My stomach can hold so little now that I take only a drink or two or a few bites of food and feel uncomfortable. My system is trying to adjust. So, of course, here comes the weight issues again. This morning I am done to 99 lbs. Not a good thing for me. Bennie says that I don’t eat enough to keep a bird alive. So, every few hours I try to eat a little more. Gone are the days that I thought 126 was just too much weight for me. Oh for a few of those pounds. Baby steps, though. I just keep focused on that today is a beautiful day and it’s my favorite and I got to see all my friends at CRBC. I am so thankful for all of the hugs, smiles, waves from the choir loft, prayers, and love from all of my church friends. You are a huge source of strength to me.

Tomorrow Bennie and I go to see my surgeon. He has been out of town for the past week or more. So, he wasn’t here last weekend while I was in the hospital…again. We are going to have a serious talk with him. Hopefully we will have a course of action to take. I will let you know.

Last night I got to enjoy watching Bennie and Zach do what daddies and their teenage sons seem to love to do…you know just acting the way guys do. After they had both gone to bed I was still up. I had a few things to finish up. While I was setting Bennie’s coffee for this morning I had this unbelievable calm come over me. The most wonderful assurance that Bennie and Zach will be okay. No matter what happens my boys, I know, will love and depend on each other. Their bond is unbreakable.

Quote of the day:

“It’s simple…just love each other.”
~ Stephanie

Verse:

For God so loved the world that He gave His only begotten Son so that whosoever believeth should not perish but have everlasting life.
Jon 3:16

Saturday, July 29, 2006 8:56 PM CDT

No One Else Knows by Building 429

My world is closing in
On the inside
But I’m not showing it
When all I am is crying out
I hold it in and fake a smile
Still I’m broken
I’m broken
Only one can understand
And only one can hold the hand
Of the broken
Of the broken
When no one else knows how I feel
Your love for me is proven real
When no one else cares where I’ve been
You run to me with outstretched hands
And You hold me in your arms
Again
I need no explanation of why me
I just need confirmation
Only You could understand the
emptiness inside my head
I am falling
I am falling
I’m falling down upon my knees
To find the one who gives me peace
I am flying
Lord I am flying
When no one else knows how I feel
Your love for me is proven real
When no one else cares where I’ve been
You run to me with outstretched hands
And You hold me in Your arms
Again
I have come to you in search of faith
Cause I can’t see beyond this place
Oh You are God and I am man
So I’ll leave it in Your hands

I share these lyrics to songs in my posts because it is music that speaks to me, comforts me, and relates to how I am feeling at that time.

Sometimes when life gets so tough, times when it is almost too hard to breathe or imagine going through another minute of what is before you. We have to stop and take the smallest of steps. Be thankful for the sunshine on our face, in fact be thankful for that next breath.

That is where I am now. Tiny baby steps and trying to remember to be thankful in the smallest of accomplishments. Most days I have an easier time of handling this journey. But on mornings like this morning I sometimes get lost in all that has changed. Some of the ways things have changed I would never change back. I have this incredible network of loving family and friends all over the world. And yes, it is all over the world. From here in Tennessee to as far away as Japan, friends, some that I have never even met, are praying for my family and me. Being able to share my journey with all of you like this is something that might never have happened had I not gone through these last years. I am honored and thankful to be able to share this with you.

The parts I miss are the freedom to eat simply for the joy of it, live a day without pain, the ability to make long term plans. I put the last part because that is an issue for me and the boys. Because we just never know the next time I will start running a temp and end up in the hospital. It’s hard to live each day like that. When all you really want to do is escape to the sunny beaches of Maui.

Please forgive me for being so emotional in this post today. I have promised to share with you every part of this journey that I am physically and emotionally able to. Sometimes just walking this is so completely overwhelming. But every step of this no matter how emotional or hard is all to God’s glory. Because He gives me the strength to take the next step.

Please continue to lift my family and me up in your prayers. Plus, please, please keep those emails and notes on my guest book coming in. You will never know the number of smiles and the comfort I get from that moment you take to send an email or note.

Quote of the day:

“My friends are my estate.”
~ Emily Dickinson

Verses:

A friend loveth at all times.
Proverbs 17:17

In his hand is the life of every creature and the breath of all mankind.
Job 12:10

Wednesday, July 26, 2006 10:43 PM CDT

Before I get into my post for tonight I want to say thank you to all of you that took time out to come by my house, email, send cards, or call me on my birthday. Thank you for celebrating that special day with me. I am blessed by all of your love and support.

Now for the tough part….. Today’s post.

Mountain of God by Third Day (chorus)

Even though the journey's long
And I know the road is hard
Well, the One who's gone before me
He will help me carry on
After all that I've been through
Now I realize the truth
That I must go through the valley
To stand upon the mountain of God

Tonight I am deep in the valley, down on my knees, praying to be released from this pain. I know that just like the song says I must go through the valley to stand upon the mountain of God. So I am asking all of you that read this to please say a little prayer for me every time I cross your mind.

I will post more tomorrow. Because tomorrow will be a better day.

A special thank you to my friend, Paige Hughes, for her special prayer she sent to me. I am looking forward to spending time with you at the Ladies Retreat..

Quote of the day:

“Let our actions make us worthy of the blessing we have received and [pray] that God will continue to bless us!”
~ Diane Albers

Verse:

Be my rock of refuge, to which I can always go; give the command to save me, for you are my rock and my fortress.
Psalm 71:3

Thursday, July 20, 2006 7:08 PM CDT

Every single day the Lord teaches and encourages me in this journey. Today has been an amazing lesson about faith. He taught me that in all areas we are to have faith and believe. I will share what I am talking about. As earthly people we tend to try to be in control of things. My benefit account had gotten to the point that there wasn’t enough money in it to make even a single hospital payment, much less the doctors or my health insurance. By the way BCBS decided to raise my personal insurance to $800.00 a month. That’s just to cover me! So I was a little worried about that. Anyway I had been thinking about my benefit account and the fact that it has been months since there was enough in it to help us out. I had even decided that next week I would probably close it.

Now here comes the awesome part. Today I received a copy of a deposit that was placed in my benefit account! Just in the nick of time, He said be patient and have faith. The couple that made this contribution are very dear friends. I love them to pieces. Thank you so much for your unbelievable generosity. I am humbled and amazed, thank you!

So my message for this post is no matter what, don’t loss faith. He will work it out in His perfect time.

Prayer for today:

Father,
Please help me to be a woman of faith, believing that You will work all details out in my life. Let me not rely on tangible, explainable things, but to remember that You are in control of everything - known and unknown.
Amen

Verse:

Jesus saith unto her, Said I not unto thee, that if thou wouldest believe, thou shouldest see the glory of God?
John 11:40

Please leave me a note on my guest book and share your stories of faith. Your notes truly encourage me when the journey is so rocky and hard.

Saturday, July 15, 2006 9:22 AM CDT

I thank you Lord for your continued blessings and answers to all of our prayers. Thank you for loving me the way you do, for believing in me. Even when I am weak and only have the strength to pray, “Please God”.

I am so very thankful to be home once again from the hospital. This post will be a catch up for the past few days. On another post I will tell you about our Savannah trip.

Day before yesterday (Thursday), the day after we got home from Savannah I had a 10:00 appointment for a CT scan. While we were in Savannah I was running fevers as high as 102.5, just struggling. Thursday morning I was tired and really didn’t want to get up and go. On the way there Bennie and I talked about how tough it is on not only the person with the illness, but also on the people that love them. The person with the chronic illness is trying so hard every day to take steps to living as normal a life as they possibly can. While the ones around them have to adjust the way they live their lives in some ways. Just because I am the one that has this nasty FAP doesn’t mean that my family doesn’t suffer because of this. But I am thankful every day for God’s strength that binds us together.

Once Bennie and I got to my “second home” we went to check in for CT. It was like an icebox back there. Bennie got me a heated blanket. What a guy! I was called back to get my iv. I know all these people so well. After all I glow in the dark from far too many CT scans to count. So we are definitely on a first name basis. The regular guy that does my iv couldn’t find a vein in my left arm (my PICC was in my right one and my left doesn’t have good veins anyway.). So he called in PICC service to ultrasound my arm to try to find a vein. She ended up stick me twice and still said that she wasn’t sure about it. While I waited they got me another heated blanket. I was shaking like a leaf. It was finally my turn, and of course the iv didn’t work. The radiologist decided to use one of my Picc lines. After I was done there we went over to nutrition so they could draw labs for the infusion company to be able to mix my new formula for my TPN. The nurse couldn’t get either line to draw. Then she noticed how cold I was and took my Temp. It was 102.2. She told the doctor and bang they shocked me saying they were sending me to General Surgery to be admitted. This was not something I was prepared for. I had too much to get done. My baby boy was leaving for youth camp on Sunday. I still had to finish unpacking us from Savannah. You know, just stuff.

I told the resident over in General Surgery that I had been on multiple floors there and my favorite was 9...9 South to be exact. But there is know knowing where you will end up especially when the hospital is full. Guess what? I ended up not only on 9 South, but also in one of the corner rooms. What we call the suites. Plus, being on 9 South I knew I would see Glorious Gloria.

To make a long story a little shorter, they decided to culture my port, my PICC, and do a urine culture. Plus they were pushing fluids in me because I was dehydrated. It’s hard on the body to run fevers like that everyday. They accessed my port (they did this with no numbing what so ever and with a larger gauge needle then I usually have) and drew cultures. Then they had no success trying to draw blood from either line on my PICC. So they pulled it right there in my hospital bed and cut the tip to be cultured. My surgeon thought that it was probably the PICC causing the fevers. My CT actually looked the same to a little better he said. He told me that the collection was the size of a ping pong ball. Before I had the PICC pulled he had told me there was a chance it would be pulled. So I asked him what I would do about TPN. He said that he guess I would have to drink full liquids and try to eat soft foods like mash potatoes and stuff like that. So I got my birthday wish and prayer early. Thank you Lord! Now I just have to make sure I keep my weight and hydration up. This is very important. Right now my stomach has shrunk so much I can only hold small amounts at a time.

Friday morning my surgeon came in to see me. During the night my fever had broken. I thought that I was going to have to stay in the hospital a few days because he had talked about repositioning the drain. But when he came in he said things looked good. I could go home. He would see me in a week to see how I was doing. Plus, he would have his secretary set up a (nasty) water soluble enema study for 2 weeks to see how things look in my small bowel. I was so thrilled I would be going home to my boys.

One thing I was sad about was that while I was in the hospital our hometown hero Sgt. Kevin Downs finally got to come home and I missed being there for his homecoming. Thank you Lord for your amazing grace in bring this young man home to the people that love and care for him. What a wonderful blessing and proof of answered prayer.

Okay so I haven’t told you about my time with Glorious Gloria. She is so spirit filled. God knew what He was doing when He brought her into our lives. What a blessing and uplifting joy to spend time with her and talk about our love of the Lord. I can’t say enough about this angel here on Earth. I thank the Lord for her testimony she is sharing. She is a beautiful woman.

As I type all of this the house is quiet. I am just so happy to be home. Thank you so much for your continued love, prayers, and support. We are walking this journey together for God’s glory.

I want to share the lyrics to this song. It has been on my heart for the past few days. I hope you enjoy.

You Are My All In All

Dennis Jernigan

You are my strength when I am weak
You are the treasure that I seek
You are my all in all

Seeking You as a precious jewel
Lord to give up I'd be a fool
You are my all in all

Jesus Lamb of God worthy is your name
Jesus Lamb of God worthy is your name

Taking my sin my cross my shame
Rising again I bless your name
You are my all in all
When I fall down you pick me up
When I am dry You fill my cup
You are my all in all

Quote of the day:

“If you trust God and believe that He is working, regardless of what you see, hear, or feel, you will be able to handle each day as it comes.”
~ Steven S. Foster

Verse:

Walk worthy of the calling with which you were called.
Ephesians 4:1

Tuesday, July 4, 2006 8:38 AM CDT

I want to wish everyone a happy and safe Fourth of July. I hope you all enjoy a day with your families and friends. I am so thankful to be home and feeling a little bit stronger each day.

Yesterday I was thinking about when I went in the hospital for the first surgery on May 30th. Then a few days later came the emergency surgery, things were really bad. For that first week and a half that I was in the hospital I was so very ill that I don’t really remember much about it. But I do remember one day they were rolling me out for the second surgery or to place another drain (can’t remember which) I felt so bad I wasn’t talking at all. But at different times Queen and then my dad came up close to me and held my hand. Each time I told them that I hurt too bad, that I was so tired, I just wanted to let go, let it be over. This is something that I wouldn’t and couldn’t say to Diva or Bennie. They were trying so hard to be strong and things looked really bad. But that wasn’t in God’s plan.

It has been a long hard struggle this time. But each day brings new hope and answered prayer. Yesterday Bennie and I had to go to Vanderbilt to see my surgeon because my drain wasn’t holding a charge. We thought he might pull it. But he wants it to stay in for at least another week. So he covered it with a vac dressing to try to seal the leak. Then a week from Thursday I will have another CT to see how things look. Oh, another good thing is that he said I could start drinking (clears). I am so excited. That just makes me one step closer to being able to eat again. And buddy I need to pack on some pounds. I have lost from 112 down to 103. They aren’t very happy about that.

My prayer is still that I will be able to eat by my birthday on July 25th! So keep those prayers going they are being answered every day. Thank you, Lord!

Quote of the day:

“God aims to exalt Himself by working for those who wait for Him.”
~ John Piper

Verse:

Walk worthy of the calling with which you were called.
Ephesians 4:1

Thursday, June 29, 2006 6:04 PM CDT

In the past two days I have done quite a bit of “crying out to Jesus”. Yes, Tuesday and Wednesday were very sad, hard days for me. Every time I turned around I was crying and saying, “God please!” Even now trying to type about it brings those tears to the surface. One of the times was Tuesday night. Zach decided that we were going to watch a movie together. So he was trying to figure out which disc the movie was in. He pushed a button and up popped our Hawaii pictures set to music. During the middle of it Zach looked over and asked if I was crying. Then Bennie wanted to know why I was crying. I told them that I wanted to go back there so bad. I was happy and felt good. It was just a perfect time. It was such a special time the three of us shared together. The last time we got to go my parents turned in their sky miles to give us the tickets. It was the most wonderful present, so healing. So if any one out there has an over abundance of sky miles that you just don’t know what you are going to do with them, think about the Crowes. One day, hopefully my 20th anniversary this December, we will make it back there. Bennie said to see me cry like that just broke his heart.

Okay so back to the cry baby. Every time I turned around I promise I have cried. Yesterday while I was having my CT done I cried through it. I cried and prayed, “God please I am a child of Yours and I know you are working Your healing. Please give me some good news.”

I waited for my call. Finally around lunchtime I called to leave a message with my surgeon’s secretary and he was there. He told me that the scan looked 500 times better than when they first put the drain in. He was amazed when I told him that my output was down to 3 cc. a day. So he said that I could start drinking clear liquids to see how I handled that and how the drain did. Then I asked him about those nasty shots. He told me I had to make a choice, drinking or giving up the shots. I chose to stop the shots. So I have to watch my output and how I feel for the next week. Then in 2 weeks I will have another scan to see how things look. There is one area of an air pocket that he isn’t sure about. Other good news is that I finish 1 of my antibiotics on Friday and the rest on Sunday. So it is my hope to be able to go to at least church this coming Sunday. I have missed all my friends at CRBC.

How could today not be a great day? No way possible. And I am looking forward to more of those.

To all of you that have been so kind to me and my family I want to thank you. I have not had the strength yet to even begin thank you notes. My hands stay so shakey right now that I can’t really write. You wouldn’t be able to read the chicken scratch. But I will get there. But for right now your kindness has been such a blessing to me during this tough time. Thank you God for such wonderful family and friends. You are all loved. Blessings to you all.

Quote of the day:

“Character is something you are; but it must also be something you desire to become. Ultimately, your character is your mark on society.”
~ Stephanie Nelson

Verse:

All my fellow townsmen know that you are a woman of noble character.
Ruth 3:11

Tuesday, June 27, 2006 5:41 PM CDT

Today has been a long and tiring day for me. This morning I had to pack my ivs to go because I had to go back to my “second home” for some appointments. The first stop was with human nutrition. They had to go over everything and of course one issue is that I am losing weight. The last time they weighed me I was 112. Now I am 105. So they are going to make some changes to my TPN. Plus my blood levels are still low. Although they are slowly building.

Next we had to go to the PICC service to have my PICC injected with TPA to bust a clot that was in it. That stuff has to stay in there for a while. So while we waited we went on up to General Surgery. I had emailed my surgeon last night to let him know that the stitch in my drain had popped out. Of course, he told me to come in to have it re-stitched. Yuck. So, I got that done and they scheduled me for a CT tomorrow at 10:30 to check on the placement of the drain. I pray that everything looks good and that the decrease in the output is God’s healing.

To do all of this required a great amount of walking which completely wiped me out for the afternoon. We finally made it back home a little after 2 just in time for that nasty injection. I have been resting since then. All I have left to do for today is get TPN started at 8:00, take that nasty injection and do my last iv of the day at 10:00. Then it’s bed time by 11:00. Only to have to start all over again in the morning at 4 am.

But I am being a big girl about all of this stuff. Each day brings me a day closer to my goal. Thank you for your continued prayers, love, support, notes on my guest book, and emails. They comfort my heart.

Quote of the day:

“Faith is taking God at His word. It is believing that what God says is true even though your human eyes are telling you that you are facing an impossible situation.”
~ Jan Silvious

Verse:

As the Scriptures say, “It is through faith that a righteous person has life.”
Romans 1:17

Monday, June 26, 2006 9:23 AM CDT

What a beautiful Monday morning it is! I have good news this morning. My drainage output has gone from 300 cc on Thursday, 78 cc on Friday, 20 cc on Saturday, to 5 cc yesterday! So I am being a big girl and taking those 3 nasty injections a day. The next step will be to let the surgeon know about this. He will probably order a CT to see how things look, make sure their aren’t anymore pockets of fluids. So hopefully I will be able to eat again by my birthday, July 25th. Now that will be a wonderful present.

My blood levels are still low. The nurse is coming to do labs this morning. I am also still walking kind of like an 90 year old woman, especially if I stay up for a while. So I take a few naps a day to build my strength back up and rest my back. The thing that makes walking straight a challenge is the big tube that they have coming out of the right side of my abdomen. Gosh, it’s like a mini garden hose…just joking. But it is one of the biggest.

Other good news is that Friday should be my last day on all of these iv antibiotics. Then we just have to do the nasty injections and TPN. I go to see my Human Nutrition doctor tomorrow. He is the one that does the TPN. I have a few questions for him.

Well, I need to stop here for now to be ready for my home health care nurse. Thank you all for your continued prayers for me and my family. God is so good. He’s working on it in His time. I hope you have a blessed day!

Quote of the day:

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”
~ Mother Teresa

Verse:

Trust the Lord, and do good things. Live in the land, and practice being faithful.
Psalm 37:3

Friday, June 23, 2006 4:36 PM CDT

Hello friends and family.

Today I keep hearing in my head, “I must go through the valley to walk upon the mountain of God” It’s one of my favorite songs. And I truly feel that valley right now. But I keep trying to remind myself that I am one step closer and at least I am at home.

I found out today that my hematocrit and hemoglobin are both really low so that is another reason I have no energy and sleep so much right now. The doctors are waiting to see if it builds itself back up.

Today was tough for me because I had a doctor appointment and Zach did too. Yesterday he hurt his thumb during basketball camp. This morning Bennie took him to the doctor (that’s what I have always done) and then on for an x-ray. While my sister-in-love took me to my appointment. That was tough not being able to be there. But thankfully his thumb is just sprain pretty bad.

Please pray God’s strength over me. Right now it’s just small baby steps. And being human we long for what is comfortable…normal life. At this point just to be able to fold the clothes to help Bennie out would be a huge plus. God is certainly working on the patience thing with me.

Today’s post I am going to end with a verse, thought, and prayer of the day that #15 sent to me. I could barely read it through my tears. She sent it at the perfect time. I hope it is for you too.

VERSE:
> Those who hope in the Lord will renew their strength. They will
> soar on wings like eagles; they will run and not grow weary, they
> will walk and will not be faint.
> -- Isaiah 40:31

>
> THOUGHT:
> It is easy for us to live victoriously for the Lord when we soar
> on the wings of eagles. It can be exciting when we run and don't
> grow weary in the work of the Lord, buoyed by his power and
> presence. But it often takes heroes to keep walking and not faint
> when trying times come. Keep on walking brother and sister. The
> Lord is there when you most fear he has forgotten you!
>
> PRAYER:
> Majestic God, whose voice holds together our universe, give
> those who can barely walk the strength to continue as they face the
> stress and assault of the evil one. I specifically want to pray for
> those I know personally who are facing trying times. Please, dear
> LORD, give them strength and meet their most pressings needs.
> Through Jesus, who conquered Satan, sin and death, and in the power
> of his holy name I pray. Amen.

Wednesday, June 21, 2006 9:31 AM CDT

Thank you, Lord for bringing me back home once again…and for more than a day. Thank you to all of you for your prayers, love, and support. They mean the world to me and really, truly brighten my day. Right now the days are pretty long and tiring. I have always promised to be truthful about what I am going through so that you will be able to pray for me and my family.

Just being in the hospital for 3 weeks really knocks a person out. Then you add 2 surgeries, 3 procedures, TPN, 3 nasty injections, and 4 iv antibiotics all in a day. My day starts at 4 am. I have to get up to apply Emla cream to the place I am going to get my injection. Emla cream is a numbing cream. But it only numbs the surface. I get my first injection of the day at 6 am. From there I have make sure to take out each medicine at least an hour before I infuse it. I get three in the morning. So the medicines alone take 2 ½ hours to infuse. Plus, I have to discharge my TPN from the night before and check my blood sugar coming off of TPN. Then at noon it’s time for more Emla cream to get ready for my 2:00 injection. Let me just stop here and tell you that this is the most painful injection I have ever had in my life. It can literally make me cry at times. So I dread those three times each day. At 6:00 I have to lay out my TPN for the night to warm to room temperature. We start it at 8:00. Then it’s more Emla cream to get ready for the last nasty injection of the day. Plus, I have one more antibiotic at 10:00 that runs for an hour. By this time I am so totally exhausted that Bennie does this one while I lay down. Because I am up all during the night to empty and record what is in my drain. As you can see it’s a packed day.

This time on TPN, no there is no “chip licking”. Can’t imagine doing it. Nothing tastes right any way. I say that because in the hospital my blood sugar got real low one time so they brought me some cranberry juice, which I use to love. Yuck. I drank it. But it tasted nasty. The only thing that taste right to me is ice water. Sonic ice is the best, of course. But I am only allowed to have a very small cup a day. So I save my ice in the frig. You would be amazed how long it last.

The tough thing about TPN this time is that my mouth stays so gummy feeling. So I rinse it with water every so often. I just have to spit it back out.

The boys are doing great. Zach is thrilled to have his mama back home. They took me to the salon here in KS yesterday to have my hair washed and fixed. That felt so good. Because the last time I had had a really good hair washing had been 3 weeks ago. Now Diva did get one of those shower cap things in the hospital and that helped. But to have someone just rub your head and really get it clean was nice. Then we went home and I rested for a bit. Later the boys took me with them while they went down to Sonic to eat. I usually have a break in medicines from 2:00 until 6:00. I rest some of it and they try to do something with me for part of it. Trying to build my energy level back up. I just get so tired, so easily right now.

Tomorrow I have an appointment with my ID doctor. So most likely I won’t post…maybe after I have rested in my break time. Tomorrow will be the first time I have to load up all my meds to take with me so I can stay on schedule.

I hope this has made a little sense. I tried to shorten it a little. The biggest thing is that I am so happy to be home.

Please continue to pray for my continued healing.

Quote of the day:

“Simple gratitude helps us experience God at work in every moment of every day.”
~Harriet Crosby

Verse:

Giving thanks always for all things unto God and the Father in the name of our Lord Jesus Christ.
Ephesians 5:20

Tuesday, June 13, 2006 1:47 PM CDT

Yes, thank you, Lord for this most beautiful day He has given us. I have made it back home to my boys. Today’s post will be short and sweet because I haven’t spent anytime with Zach these two weeks. So he deserves my undivided attention. I have finally caught up with all of your wonderful notes. The outpouring of love, support, and prayers are overwhelming to me. Thank you from the bottom of my heart.

Quote of the day:

“I am joyful in the blessing of being home.”
~ me

Verse:

The Lord is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him.
Psalm 28:7

Monday, May 29, 2006 5:04 AM CDT

Yesterday was the absolute best day! Of course, it started by being my favorite day. So I got to be with my friends at CRBC. I love this church. My friends there are such a wonderful strength to me. Especially some of you that are reading this right now. You know who you are.

The church service was just wonderful and a little emotional. At the end of the service Bro Bob called Bennie and me to the front of the church to pray for us. Then he asked everyone to come by to see us and let us know they would be praying for us. What an incredible source of strength and comfort that was to both of us. God just knows how to make everything better. I will carry those hugs, well wishes, and prayers with me into the surgery tomorrow.

I’m not really sure what we are going to do today. It’s still so early…ha ha. Nobody else is awake right now. But I do know that I am going to enjoy this day with my boys. Plus, I will get to see Diva again today. What a bonus.

So now I end this post, knowing that this will probably be the last post I leave for a bit…at least a week. That makes me a little sad. But don’t stop checking the site because I will have my mother leaving notes on the guest book to keep all of you up to date. I love and am so thankful for all of your prayers, love, and support. Better days are ahead. Okay, but just because I won’t be able to post doesn’t mean you can’t leave me a note on my guest book. What a wonderful surprise and gift to come home to…my guest book flooded with notes from all of you.

Since I won’t be able to post for the next week I am going to end today’s post with more than one quote and a few verses. The truth is that I couldn’t decided on the quotes. I wanted to use them all. Plus, the verse are such strength.

Quotes of the day:

“God always gives His best to those who leave the choice to Him.”
~ Unknown

“We can rejoice - when we are rejoicing in the Lord, our strong refuge and righteous Judge.”
~ Anne Cetas

“Why must I bear this pain? I cannot tell; I only know my Lord does all things well. And so I trust in God, my all in all, for He will bring me through, whate’er befall.”
~ Smith

“”God tries our faith so that we may try His faithfulness.”
~ Unknown

Verses:

Be strong and take heart, all you who hope in the Lord.
Psalm 31:24

We live by faith, not by sight.
2 Corinthians 5:7

Let us hold unswervingly to the hope we profess, for He who promised is faithful.
Hebrews 10:23

Psalms 23 & 91

Sunday, May 28, 2006 6:58 AM CDT

It’s early Sunday morning. The house is quiet. My boys are still snoozing. I am just listening to my music on headphones and talking with God. I find myself at a loss for words yesterday and today. So, I just say to Him, ”God, please.” and “Please be near me. I’m scared.” The tears have started surfacing more and more in the last few days. Now please don’t think my faith has faltered a single bit. No, it hasn’t. But I wouldn’t be telling you what is on my heart if I didn’t share that I am scared and teary. I know it’s okay to be those things. But I still firmly believe that this is my journey and God is walking it with me.

I am looking forward to spending the morning with my friends at CRBC. My last time to go to church before surgery. Then I am going to get to see my mother after that. So the day is already shaping up to be a great one. I hope yours is also.

Quote of the day:

“Security is our nearness to God, not our distance from danger.”
~ Kenneth R. Hendre

Verses:

“Have faith in God,” Jesus answered. “I tell you the truth, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.”
Mark 11:22-24

Saturday, May 27, 2006 11:33 AM CDT

It’s hard for me to type right now from the tears in my eyes. I have tears in my eyes because I just read my Baby girl’s note to me on my guest book. You know I love you to pieces. And I feel comfortable knowing Zach will be with you.
I always read my guest book before I start to post. Maybe this morning I am more teary eyed because the days are closing in. Tomorrow is the last time I get to go to church before my surgery. I am really looking forward to tomorrow. Plus, tomorrow is my last day to eat whatever I want. Come Monday it will be clear liquids for the day. Plus, I have to drink that nasty green stuff. Yuck!

This morning Zach and I went to the middle school to pick up his report card. It was sad to know that was the last time we would be there because he was a student. It was fun to watch him talk to his teachers and cut up. He even had past teachers calling him over to them. Zach’s just a big cut up. Loves attention.

I’m not really sure what we are going to do today or this weekend. Just enjoy being together. I have started getting things together for the hospital, since I will be there at least a week. One of the important things, of course my bible is first on that list, is the stickers that I will place on my abdomen before I go in for surgery. These stickers read: FRAGILE and HANDLE WITH CARE. Before I have surgery I always do that. It’s good for a laugh. Everyone gets tickled over that one.

Well, that’s all for now. Go enjoy your family. That’s what I am going to do.

Quote of the day:

“Wherever we go, God is there, whenever we call, God is listening, whatever we need, God is enough.”
~ Bonnie Jensen

Verse:

Yet I will rejoice in the Lord…The Lord God is my strength.
Habakkuk 3:18-19

Thursday, May 25, 2006 8:06 AM CDT

May 30th is getting closer and closer and I still have so much I would like to do before then. But I realize I shouldn’t confuse the not so urgent with the important. Some things I will just have to look forward to doing when I get out of the hospital. There are so many of you that I would like to see and or have lunch with before surgery. But as I said the days are quickly passing by. So lets make dates for when I get through this surgery and am feeling like my ole self once again. I am looking forward to some wonderful days.

You ask am I scared. I wouldn’t be telling you the truth, as I have promised to do, if I didn’t say I am a little scared. It’s hard to hear the list of complications and not become a little scared. But every time I feel that scared feeling creeping back over me I just ask God to comfort me and thank Him for His love of me. So, as you can imagine, I am doing a lot of praying right now.

I want to say a special thank you to Diva (my mother). She went to the Red Cross yesterday and donated blood for me. I will most likely need blood during and/or after surgery because I am going into this with an already low hematocrit. Thank you for yet another selfless gift. I love you so much!

When I go into surgery and while I am in the hospital I will have Diva post how things are going on my guest book. While I am in the hospital you could leave me lots of notes so I will have so many gifts to look forward to. The gifts being your notes. That’s how I feel about your notes to me. They are true gifts from your heart straight to me. They lift me up and keep me encouraged.

Today’s verse is one that my Sista-Gur left me on my guest book. Sista-Gur, this was one that I didn’t already have highlighted in my bible. But it is now. Thank you for sharing. I love you.

Quote of the day:

“Trust and know.”
~ Stephanie

Verse:

“Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”
Deuteronomy 31:6

*** Check out the new photos.

Wednesday, May 24, 2006 7:53 AM CDT

**** I have changed all three of my photos. So check them out. ****

Hi everyone. Sorry I have made you wait to post after seeing the surgeon. But I just needed to take some time to digest everything. Plus, I wanted to concentrate on Zach’s eighth grade graduation, which was last night. I almost cried, of course, it was when the principal was speaking about their class. Because Zach’s class is the last class she taught before becoming the principal. So she said that she would never know another eighth grade class as well as she knew this one. It was bittersweet. After the graduation there was a reception that the parents were allowed to be a part of. Then we had to leave so they could enjoy their dance. Zach said that he had a great time.

Oh yeah, but I guess I have to get back to that old surgery stuff and what all the surgeon had to say. It ended up being Bennie, Diva, and me at this appointment. The surgeon talked to us about the surgery and all the complications. You know how they have to tell you down to the very worse thing that can happen. I personally would not have minded skipping right over that part because after my first of this group of surgeries (in the last 3 ½ years) I had every single complication he had talked to me about. So, you see why I wasn’t really wanted to go over that part? But this time is going to go much smoother. He’s going to get in there and clean everything up, get me all fixed up.

The surgery….the surgeon is not really sure what he will be able to do until he gets inside. He told us the three possible ways it could go. He could get in there and not be able to do anything, which would leave me with a long term fistula and having to live with a drain. The next is that he could be able to repair only the hole in the small bowel. The last way is if he can remove the section that has the fistula in it and reconnect my small bowel. Also hopefully remove some or all of the tumor that is there. It will depend on what all it is attached to.

The complications: The worse one and lets just get this over with is that I could have a leak which would put me in the ICU on a ventilator, damage to the heart, lungs, and kidneys. This is the one I could live without talking about.
The other complications are that I would have to have another temporary ileostomy while things heal, infection (but I am living with infection right now with this cystic desmoid), and damage to the small bowel, kidney, ureter, and/or bladder.

So please be in prayer for me, my surgeon and his team, the nurses, and basically everyone that comes in contact with me going through this. May the hand of God be very present to all those around.

On a mama note….please pray for my baby, Zach. He will be starting his high school basketball tryouts the day of my surgery. He is very nervous. I feel terrible that I won’t be here for him. But I know this surgery is important so I can be there for him and Bennie for a lifetime. So please pray for my boys.

This morning I have an appointment with my oncologist and have to have my port accessed. I will let you know how things go.

Oh some more encouraging news… my surgeon said that is was very good that they had found a chemo regime that my tumors responded to. That is something that is very hard to do with desmoids. I say it’s just another answer to a whole lot of prayers being sent up. Thank you for always remembering me.

Please leave me a note on my guest book or even an email. It’s sure to put a smile on my face.

Quote of the day:

A bible that is falling apart probably belongs to someone who isn’t.
~ Unknown

Verse:

“Heaven and earth shall disappear, but my words stand sure forever.”
Mark 13:31

Monday, May 22, 2006 8:17 AM CDT

Yesterday was a very scary and painful day. I woke up feeling not so good. But I thought, “You can make it to ss and church. Just get going.” When I got up I just got to feeling worse and worse. My temp was up and the pain in my abdomen and flank was in full force. Bennie and I were sure I was headed back to the ED. Bennie actually thought I would end up having surgery early also. He wanted to call my surgeon. I told him we should start with my interventional radiologist (the one that does my drains). He called us right back after we beeped him. He talked to Bennie about a few things he could do. Bennie tried with no success. So the doctor told Bennie to screw a syringe to the white part of my drain and see how much saline he could draw out. Bennie told him 2 ½ cc. Next the doctor shocked Bennie and me. He told Bennie to remove the drain, right there sitting in my bathroom, rip right out. Let me just tell you, it hurt so bad I was shaking. When I see my surgeon today I am going to tell him that they have no business telling people that things don’t hurt if they have never experienced it themselves. At least be honest and say you don’t know or it will be uncomfortable. I guess I should tell you that it was my drain going into the small bowel that Bennie pulled out. It wasn’t draining at all. The other drain was clogged. But after Bennie pulled the drain the other started working a little better. I stayed in bed most of the day because I felt so yucky. But the good things are that my temp went down, the pain eased up, and I made it through another day. Thank you Lord.

Today Bennie and I have our meeting with my surgeon to discuss the surgery and ask any questions. I am apprehensive about this surgery. My surgeon and another doctor have also said that they are apprehensive. Kind of makes a girl a little bit nervous when the doctor tells you he is apprehensive. You know we always think, “Oh, he’s a surgeon.” But the stuff that he is having to deal with with me are things that some doctors never even see in their entire practice. So not your every day surgery here. The only thing I know to do is to pray every time I start to think about it or get scared about it.

Please remember Bennie and me in prayer this morning while we meet with my surgeon at 11:00. I pray that I will feel more confident after our meeting.

Please also continue to pray for my Uncle Don and Kristina. They are both doing well. Kristina is actually already out of the hospital, believe it or not. My Uncle Don will have to stay in the hospital for a week and then close by for 3 more weeks. My mother got to speak to him yesterday and said that he sounded wonderful and he was up walking around. He told her when they transplanted the kidney that it immediately started working. So please keep their whole family in your prayers.

Quote of the day:

“Since God offers to manage our affairs for us, let us once and for all hand them over to His infinite wisdom, in order to occupy ourselves only with Himself and what belongs to Him.”

— J. P. de Caussade

Verses:

The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.
Psalm 23

Saturday, May 20, 2006 8:29 AM CDT

Please continue to pray for my Uncle Don and Kristina. Both of their surgeries went well. Now starts the long road of recovery. They will have to stay close by the hospital for 2 to 3 weeks to make sure everything is okay. Please also remember my Aunt Vera and Emily also. I am so thankful their surgeries went so well.

Well, 10 days and counting for me. Sometimes I feel the “game face” on then others just the face of a scared little girl. I’ve been through this drill so many times, too many to count. I know what to kind of expect. I know the “work” to be done after surgery. I am trying to prepare myself mentally, emotionally, and physically for this. Please pray with me for these strengths.

On Monday Bennie and I have an appointment with my surgeon to discuss the surgery and ask any questions we might have. Then a week from this Tuesday I have surgery (May 30th). Of course, I will be at Vanderbilt and probably on the 9th floor at the hospital, that is the general surgery floor. While I am in the hospital I will ask my mother to keep you all up to date on my guest book. She will let you know what room I end up in and the phone number, how surgery went and so on.

This post is mostly about prayer because I am asking you to please remember my Zach. Yet again he is faced with his mother being away from him. Thankfully I will get to go to his 8th grade graduation before my surgery. But the day of my surgery he starts basketball tryouts for the high school. He has admitted on several occasions that he is nervous about it. Then on top of that to not have his biggest cheerleader here to boost him up. I was afraid that this is what would happen when we chose the date. But we are in hopes that surgery goes smoothly and we can take a family vacation somewhere sandy maybe in July.

Today we have the Crowe family reunion. This is the first official one. It should be a lot of fun. I’m looking forward to it. Then, of course, tomorrow is my favorite day, Sunday. I hope you all have the most wonderful weekend!
\

Quote of the day:

“Hope is a song in a weary throat.”
~ Pauli Murray

Verse:

Thou art my hiding place and my shield: I hope in thy word.
Psalm 119:114

Thursday, May 18, 2006 3:03 PM CDT

I have good news and then not so good news. The good news is that my scope went fine this morning. Everything looked okay. The not so good news…my surgery date is May 30th. We talked to my surgeon today and set the date. This is the only way really left to try to fix things. Even when he goes in there is no promise that he will be able to take care of all of these issues. But after having to deal with these drains for 6 months I realize surgery will probably be the only way to hopefully be rid of them.

My thoughts are a jumble right now. I have 12 days to get my “game face” on. I am at loss for words right now. But you know what I am thankful for? I told Bennie at least I would get to go to church 2 more Sundays before surgery.

I would like you to remember my Uncle Don, Aunt Vera, Emily, and Kristina in prayer. My Uncle Don has to have a kidney transplant and Kristina is donating one of hers. Surgery will be tomorrow. I asked that you remember the whole family because when you have someone in the family with a chronic illness it effects the entire family. I know that too well.

After I got out of the hospital today Bennie took me to PF Chang’s for lunch. When the fortune cookies came he said that we had to add “in surgery” to the end of the fortune. So the quotes (2) are our fortunes. The first one was mine. The second one was Bennie’s.

Quote of the day:

The strengths in your character will bring you serenity in surgery.

You are the center of every group’s attention in surgery.

Verse:

Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.
Psalm 31:24

All day today I have just sang and prayed, “Be Near O God”.

Wednesday, May 17, 2006 8:07 AM CDT

**** Addition to this post. ****
I won't have time in the morning to post because I have to go in for my lower scope. Please say a prayer that everything is clear as a bell.

Yesterday Bennie and I worked and worked on my drains, especially the one going into the abscess. It kept on getting clogged up. But of course, Bennie, “Mr. Fix It”, took it apart and flushed it a few times. Then he decided to leave the valve and stopcock off because that is where it seemed to get clogged at. So we are on a drain watch. We have to irrigate it multiple times a day (both drains).

Last night I felt really bad, my temp was up to 100, and my abdomen and flank were hurting. I thought I was headed back to my “Second Home”. This morning so far my temp is okay. But I still don’t feel just right in the middle. I think the doctor needs to check the drains to make sure they are in place.

Thank you all so much for all of your notes on my guest book and emails of encouragement. They really do brighten my day, puts the “sunshine” right in it.
I am doing a little better today. Yesterday was just a sad, sad day for me. But I am praying for my spirits to be lifted and just to rest in the arms of my Lord. Sometimes the journey gets so long and hard. “But we must go through the valley, to climb upon the mountain of God.”

Quote of the day:

“You may have to fight a battle more than once to win it.”
~ Margaret Thatcher

Verse:

Let us hold fast the profession of our faith without wavering; (for He is faithful that promised).
Hebrews 10:23

Monday, May 15, 2006 9:42 PM CDT

My faith is not shaken. But my spirits are bruised and battered. It's so hard on the spirit to be knocked down over and over again. That's what it feels like with these drains.

As it turns out the drain was clogged once again. So I am still sporting these pain in my side accessories. I had really hoped to get the biggest one removed today. I got to talk the doctor before the procedure. He was concerned that the drain was clogged. Turns out he was right. I asked him if he had emailed my surgeon like he said he was going to. If so, what did he say. He asked why. I told him that I had left a message (“We need to talk.”) a week ago last Thursday. I have yet to hear from him. That is so unlike him. But the other doctor emailed him that he needed to step up to the plate because he is starting to believe that it is going to take surgery to be able to take care of this stuff. So I will email my surgeon and wait for a response.

Also from what the doctor said today he doesn’t foresee the drains coming out anytime soon. Definitely not what I wanted to hear.

So please pray with me my spirits are so battered. Words of encouragement from you would be so wonderful. Because tonight I am so sad.

Quote of the day:

“Faith is kind of like jumping out of an airplane at 10,000 feet. If God doesn’t catch you, you splatter. But how do you know whether or not He’s going to catch you unless you jump out?”
~ Ann Kiemel

Verse:

That your faith should not stand in the wisdom of men, but in the power of God.
1 Corinthians 2:5

Monday, May 15, 2006 8:32 AM CDT

I am so excited I can’t hardly stand it! I just talked to my doctor. He wants me to come in today at noon. He said that he hopes that the drain isn’t clogged again. I told him that I don’t have a temp, no flank or abdominal pain, and nothing coming out of the drain. I think today could be the day. I am so excited I can hardly make my fingers type the right letters. Please be in prayer for me, my doctor, and the nurses today. Even though today is a cloudy, rainy day here in KS, the sun is shining brightly in my heart. God’s time is the best time!

I will post again once I get back home to let you know how things went.

This is a little side note. Please say a prayer for me this evening. I have to go for a meeting at the high school for incoming freshman. I just can’t believe my baby will be in high school next year.

Quote of the day:

“One encounter with Jesus Christ is enough to change you, instantly, forever.”

— Luis Palau

Verse:

The Lord preserveth all them that love him.
Psalm 145:20

Sunday, May 14, 2006 4:40 PM CDT

HAPPY MOTHER’S DAY!!!!!!!!!

I want to start this post by thanking my mother, “Diva”. I love you to pieces. You are my best friend. Thank you for choosing to be my mother. I am blessed by your love. I can’t wait for you to get back so we can celebrate Mother’s day together.

We have great news. Bennie had his PET scan on Friday. The doctor called us a few hours later and told us that nothing showed up hot on the scan, which lowered his cancer risk down to 1 to 2 So Bennie will have another scan in 6 months to check on it. Thank you so much for all of your prayers.

As you all know, today is my favorite day of the week and yes, I was at church with my friends this morning. It was such a wonderful service. The boys have been so good to me for Mother’s day. Zach actually took his money and bought me a rose to surprise me today. Isn’t that boy the sweetest?

I got an unexpected mother’s day gift today also. My Susta-Gur, her honey, and their two beautiful children dropped by to see us. We laughed and laughed. It was like we had just seen each other yesterday. But that’s how it is with my Susta-Gur. She is the absolute best! Thank you for brightening my entire day.

Okay, so tomorrow morning I will call the doctor and hopefully he will tell me to come in. I’m sure he will. My drain in the abscess hasn’t drained anything in 3 days. I am praying that the abscess is completely collapsed and that he will be able to remove at least that drain. It’s the biggest, bulkiest of the two. If I get that one out I could actually wear some regular clothes again. Not my “clown suits” as the boys like to tease me.

I hope all the Mothers reading this are having the most wonderful Mother’s day ever! Please take a moment to leave a note in my guest book. Your notes are such a boost to my spirits. Thank you for your continued prayer for me and my family.

Quote of the day:

“Life is not measured by the number of breaths we take…
But by the moments that take our breath away.”
~ Unknown

I know, I know, I have already used this quote in the past a couple of times. It’s my favorite.

Verse:

For he will command his angels concerning you, to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone.
Psalm 91:11 - 12

Thursday, May 11, 2006 11:41 AM CDT

I know you’ve been waiting to hear how Bennie’s doctor appointment went yesterday. Here is the capsule version of it. The doctor told us that this place could be anything from scar tissue to lung cancer. Since Bennie has never been a smoker he lowered the chances of it being cancer to 10%. The doctor talk to us about all of the options; from as radical as going in now and removing the lower lobe of his left lung and possibly whole left lung to just wait and see. Bennie told him he wasn’t a wait and see kind of guy. So he is set up to have a PET scan tomorrow morning bright and early. Hopefully we will have the report by tomorrow afternoon. Please keep him in your prayers.

After we finished Bennie’s appointment we headed over to my “Second Home”. The doctor wanted to inject my drains to see how things looked. I was hoping to have at least one of them removed. But that didn’t happen. He just changed out the drains. He told Bennie that my abscess was filled with pus and blood and the drain was clogged by coagulated blood. Now it is draining once again so we are taking steps in the right direction. Hopefully this will work out soon.

Tomorrow morning will be a busy day for the Crowe family. We will drop Zach off at school, head straight down to Baptist for Bennie’s PET scan (which takes at least 2 hours), and then to see my ID doctor at 11:00. It’s going to be a packed morning.

Thank you so much for your continued prayer for me and my family. We know God has blessed us with all of you as friends.

Quote of the day:

“The quietest wishes of your heart…
become your greatest dreams come true.
Listen - Dream - Believe”
~ Unknown

Verse:

I can do all things through Christ which strengthened me.
Philippians 4:13

Wednesday, May 10, 2006 9:06 AM CDT

*** This is an addition. My doctor wants me to come in this afternoon so he can inject the drains to see how things look. Maybe, just maybe I will get one or both of them out.

The only things I am going to post today that deal with anything medical is to remember Bennie & I in prayer as we go to his lung specialist appointment today, thankfully my drains are still empty, and hopefully tomorrow the doctor will do something about them.

For today’s post I decided to tell you about me. You know I am more than just a girl with FAP. Some of you that read my journal are close friends. Some of you I have never met. So I thought it would give you an even more personal glimpse of the person I am. Here goes…..

My favorite day of the week is Sunday. I love Sunday because it starts a fresh week and I get to go worship with my friends at CRBC. It’s just a beautiful day. Guess what? Zachary was born on a Sunday.

I love, love, love my boys! You can do anything you want to me but don’t mess with my boys. They give me the best hugs and kisses. That makes even the cloudiest day a little brighter.

Diva (my Mother) and Big Daddy you are a part of my heart. I always know you are there for me. Thank you for loving me.

My friends, your prayers, love, and support mean the world to me. You continue to amaze and humble me with your kindness.

Okay so here is some girlie stuff that some of you may already know…..

If you haven’t guessed I LOVE the color pink. To me it is a happy color. It makes everything brighter.

Butterflies and rainbows are two more of my favorite things. And you know they just make me smile.

My favorite flowers are daisies and daffodils.

I’m pretty short, 5’2”. But I like the height I am.

I love children and being around them. A little over three years ago, before all of this stuff started happening, I use to be a part of a children’s ministry group called the FBIs. We met every Wednesday night. So back then Wednesday was another favorite day for me. I was always at the elementary school talking to kids about FBIs and inviting them to come if they had never been. Our highest number in attendance at one time was 75. And that is saying something, considering we started out with like 3 or 4. This space of time when I was a part of FBIs is very dear to my heart.

I enjoy making things. Right now I am making necklaces. It keeps me busy.

I have 7 girl cousins and only 1 boy. My boy cousin is the oldest of us all. I grew up with these girls. Every summer we would all go stay with our Granny and Papa. Now that was the best, such sweet memories I’ll cherish forever. Now we email each other to keep up and I got to see them for my 40th birthday. I love you girls and Paul Jr.

I love praise and worship music. It’s just about all I listen to. It helps to keep a smile on my face and lift me up.

My two favorite tv shows are American Idol and House. That’s about the only thing I watch. I don’t watch much tv.

As you can tell by the way I end every post I love quotes. I like to share them.

Favorite desserts are; cheesecake, banana pudding, and buttermilk pie.

I have 2 devotion books, one for the morning and one for the evening, that are special to me. My Soul Sister gave them to me and they are both by Joyce Meyer. She is awesome. Thank you Soul Sister for giving them to me. I enjoy them every day.

I love the community I live in. It is a close knit, know your neighbor area. These people are so amazing that they spent a whole day doing a benefit for me. It was declared “Stephanie Crowe Day”. We had a bake sale, lemonade stand, car wash, chicken/rib roast, and concert. The money that was donated that day went to help pay my medical bills, medicines, and my insurance (insurance alone is $650.00). Of course, those bills just continue to stack up.
But back to the day. It was such a special day for me.

My 40th birthday! Yes, it was THE BEST!!!!!!!!! So many people came to help me celebrate, my Aunts, Uncles, cousins, friends that I use to call on when I was working, my friends in KS, even one of my doctors…so many people. They must really love me because it was such a steamy, hot evening. It’s a memory I will cherish forever. The night ended with a fireworks show. The fireworks were donated for the occasion.

This is a no brainier here…I love the Lord. He has brought me through the fire many times. I am so thankful for all the many blessings He has given me. Today’s morning blessing…the rain. Because to have pretty flowers we have to have a little rain.

Whew! I am tired of talking about myself. If there is anything else you want to know about me just ask. I’m an open book.

Oh, one last thing, I love to get notes on my guest book!

Quote of the day:

"No act of kindness, however small, is ever wasted."
~ Aesop

Verse:

And now, my daughter, fear not; I will do to thee all that thou requires.
Ruth 3:10-11

Tuesday, May 9, 2006 8:19 AM CDT

And the drain watch continues…

This morning there wasn’t anything in them. I’m thinking if this continues then on Wednesday or Thursday I will call the doctor. It would be nice to be able to get rid of at least one of these drains. One of the things that concern Bennie and me is the bleeding. But the doctor said that that area is just enflamed. Our concern is that when he pulls the drain the blood will have no place to escape, so it might collected in my abdomen We are just praying about this.

Today I have a doctor appointment. No, no, not at Vanderbilt. I have to go to my eye doctor. It’s that time.

Please remember Bennie (and me and Zach) tomorrow. We go tomorrow at 1:00 to see the lung specialist. It is my prayer that this turns out to be nothing to worry about. My heart has ached watching him wait for this appointment.

Things I Am Thankful For Today…

First of all, that I am beginning to enjoy eating again. But please don’t ask me what I want because I’m never sure. If we are going to go out to eat I get Bennie to give me 3 or 4 choices and pick from them. Isn’t that funny?

Second of all, That I was able to go to church Sunday. That made my whole day.

Third of all, Sunday afternoon I got to spend a few hours with Diva. So that was icing on the cake.

Fourth of all, for my Healing tapes. It is full of all the healing verses in the bible.

What are you thankful for? Think about it and leave me a note on my guest book.

Quote of the day:

“Prayer is an end to isolation. It is living our daily life with someone; with Him who alone can deliver us from solitude.”

— Georges Lefevre

Verse:

Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.
Hebrews 4:16

Monday, May 8, 2006 11:15 AM CDT

I waited from 8:00 this morning until just now waiting to hear from the doctor. That means nothing by mouth since last night either because I wanted to be prepared in case they wanted me to come in. The doctor just called. He says that he isn’t too concerned about the amount of bright red blood that came out in my drain yesterday or the fact that it isn’t draining anything so far today. He said that area is very irritated and enflamed from all the procedures. He said that if I have a couple more days in a row with nothing in the drain to call him back because it may be time to remove it. I was really hoping that he would tell me to come on in today so he could inject the drain and maybe remove it. Oh well, at least now I can go have lunch.

I am still running a low grade temp and am having the flank and abdominal pain. So I do a little bit, then rest, and do a little bit more.

I just looked out my office window and saw that the sun is shining brightly. I think I will go outside and soak up some rays. I hope you all have the most wonderful day! Thank you for all of your notes on my guest book and emails.

Quote of the day:

“If we would talk less and pray more about them, things would be better than they are in the world: at least, we should be better enabled to bear them.”

— John Owen

Verse:

And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.
Matthew 21:22

Sunday, May 7, 2006 1:53 AM CDT

I’m kind of scared. The drain that wasn’t putting out anything yesterday started putting out bloody stuff again yesterday evening. This is not right. I don’t feel very well. But I will make it through tomorrow and deal with doctors on Monday.

Please pray for me and my boys.

Thankfully Zach and a friend of his got to go out to my parent’s house yesterday when I had to go to the hospital. They got to pick out whatever they wanted at the grocery store, shooting pool, and are watching all kinds of scary movies. But they asked Nandy (what Zach calls her) to sleep downstairs with them. They are funny. They like scary shows. But then they want to sleep near an adult. They aren’t that big of boys just yet.

Quote of the day:

“God does not waste suffering; if he ploughs it is because He purposes a crop.”

— J.O.Sanders

Verse:

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Philippians 4:7

Saturday, May 6, 2006 6:06 PM CDT

Second post for today….

Back from my “second home”. Yes, I got to come home. Yippee!!!!
While I was there they did labs (blood), urinalysis and culture, and CT scan. Yes, another CT. I’m telling you I really do glow in the dark. Anyway the scan showed that the abscess was even smaller than last weekend’s scan. That is good news. There are not really sure what is going on with me. I do still have a UTI, low grade temp, and pain. They told me that because I have a stent in my right ureter I might have to stay on Bactrum. My UTIs are chronic because of the stent.

The doctor asked if I thought I needed to be admitted. My answer was a quick NO. All I could think about was being able to sleep in my own bed tonight and going to church tomorrow. I am so happy to be home. Thank you for your continued prayers.

Oh, by the way, Jenise, I saw Stoney while I was there. He is the absolute sweetest.

Quote of the day:

“God never promises to remove us from our struggles. He does promise, however, to change the way we look at them.”

— Max Lucado

Verse:

O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.
Isaiah 25:1

Saturday, May 6, 2006 8:34 AM CDT

Well, I am having trouble with my drain going into the abscess. Yesterday it didn’t drain at all, even the flushes I put in. This morning, still nothing there. The other drain has significantly less also.

I haven’t been feeling very well for the past couple of days. But I kept on telling myself that they have just messed with me so much and that is why I feel yucky. Anyway, so I just called to find out who the Interventional Radiologist was on call so I can find out what I should do. I already knew in my heart what they were going to say…those dreaded words. You need to come to the ED. Not 2 weekends in a row! And tomorrow is Sunday. All I want to do is go to church, see my friends, and sing and worship the God that saved me. I don’t want to have to spend another weekend in the hospital.

But on a positive note, maybe the abscess has completely collapsed. That would be good. If it has than they could inject the dye to check and then pull the drain. One less drain to deal with.

I’m not sure just yet what I am going to do; wait it out or go to the ED. If I do end up at the ED you know I will have Diva keep you all posted on my guest book.

I hope you all have a beautiful weekend!

Quote of the day:

“Prayer wonderfully clears the vision; steadies the nerves; defines duty; stiffens the purpose; sweetens and strengthens the spirit.”

— S. D. Gordon

Verse:

The Lord who created you says, Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters and great trouble, I will be with you.”
Isaiah 43:1-2

Thursday, May 4, 2006 11:25 AM CDT

Yesterday Bennie and I went for his second CT scan. It sure is strange to have the shoe on the other foot. We’re kind of use to all of my scans and stuff. But he is never sick. Anyway, the doctor called us with the results within an hour of his scan. The doctor asked him if he had ever smoked. Bennie said, “Never.” Then he asked if he was coughing up blood. Bennie said, “No.” So the doctor said that he wanted Bennie to go to a Lung Specialist because the mass is a soft tissue mass in the lower lobe of his lung, If it had been a calcified mass they wouldn’t be as concerned.

I have prayed and prayed. My Bennie has to be okay. Doesn’t this family have enough to handle without adding this new twist. All I know to do is pray and pray.

Oh so you want to know about me also. Well, the news on the home front isn’t sounding too good. Yesterday my drains output was 137 cc & 90 cc. The one in the abscess turned bright red bloody, uncharacteristic. Plus, I didn’t feel very well yesterday. I was nauseous all day. All those things had my flag up. The fact that I was draining so much and it was bright red. My home healthcare nurse got here and we discussed it. Then she said that she was going to call the doctor. Of course, she had to leave a message. After she finished changing my PICC line and left, I called the doctor. We talked about all of my concerns. Basically what he said was that he had done everything he knew to do. He was at the end of his rope. He believes that this “abscess” is actually another cystic desmoid and that doing all of these drains has irritated it causing it to bleed now. I know all of these drains sure do irritate me. So he is going to email my surgeon and tell him that he either needs to do surgery on me or give me another surgeon’s name. My surgeon has been adamant about not doing any more surgery on my abdomen. He said that it’s just full of scar tissue and they had a tough time closing me back up the last time he operated.

Of course, all of this scares and worries me. How could it not when your surgeon is firm in his stance of no more surgery. Please pray for my family. You know I had a almost comforting thought just now. Maybe me having to have this surgery is God’s way of answering my prayer and let me know everything will be okay. This has happened before. When my brother was killed in a motorcycle accident shortly after it happened we found out about my first desmoid tumor. So going through all of the reconstructive surgery they had to do and the rehab made us focus on different things and probably helped us to go through that in some ways. I can’t help but think that maybe once again God has a wonderful plan for all of this. So I am standing firm in, “By His stripes I am healed.”

Please leave me a note on my guest book if you have a moment. Your little pieces of sunshine truly brighten my day.

Quote of the day:

Even on the cloudiest day, God send us “sunshine”.
~ Stephanie

Verse:

“Because he loves me,” says the Lord, “I will rescue him; I will protect him for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him, with long life will I satisfy him and show him my salvation.”
Psalm 91:14-16

Tuesday, May 2, 2006 5:41 PM CDT

**** This is an addition. Please pray for Bennie. We have to go in the morning for him to have a follow up CT scan. The one that was done last week showed a nodule on his lung. Please pray.*******

I AM HOME ONCE AGAIN!!!!!!

I will post more once I’ve had a chance to rest and of course, waiting for the words. I will tell you this, I am praying and placing my hand in the area of healing. Because “By His stripes I am healed.” I believe that is in the works right now. Up until now I have been pushing, pushing to get to the next step, one step closer to having everything fixed. All the while God was teaching me patience. I have an unbelievable calm about all of this. Everything is going to be okay.

For right now I will have to live in overalls because I still have 2 drains but they changed them to an acordian and a JP. The acordian drain is rather big and impossible to hide under clothes. Oh well, overalls even for church…not so sure I feel right about that.

For right now, I am so thankful to be home! Thank you for all of your prayers.

I saw the quote I am using today on a church sign coming home today. It tickled me. Hope you enjoy it too.

Quote of the day:

Avoid SINburn, apply SONblock.
~ Church sign in Kingston Springs

Verses:

O Lord my God, I called out to you for help and you healed me.
Psalm 30:2

“I will restore you to health and I will heal you of your wounds,” declares the Lord.
Jeremiah 30:17

He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by his wounds you have been healed.
1 Peter 2: 24

Please join me in prayer every day using this verse because by his stripes I will be healed. Thank you Lord!

Saturday, April 29, 2006 9:29 AM CDT

I cried and prayed myself to sleep in the wee hours of the morning. Yes, last night was a bad night. All I could do was cry and pray. My pain level was high and was in my small bowel from the drain. It feels like a bad cramp most of the time. Sometimes it’s just worse than others.

This morning both my drain outputs were significantly less. One was 8 cc and the other was 8 ½ cc. But when I flushed both drains they didn’t drain right back out. So I will call Monday morning to set up having them injected with dye so we can see what’s going on. It is my prayer that by Monday both places will be so small or collapsed that the doctor can fibrin glue and remove these drains from my sore right hip. I tell you my poor ole right hip is really sore from all of the invasions.

The boys have been wonderful trying to keep me occupied, to keep my mind off of the pain. Day before yesterday they took me fishing. We had the best time. Of course, I caught the most fish (4). Zach caught the biggest one. We caught a total of 9 in all. We laughed and really had the best time. Zach had so much fun that he and three of his friends (girls) wanted to go again yesterday. I just watched and enjoyed being outdoors on this fishing trip. The weather was beautiful.

I think I am going to ask them to go on a picnic with me today. I guess I better check on the weather first though. I’m not sure what today is suppose to be like. I know I just need to be busy to keep my mind off of the pain. And no, I only take my pain meds at night. I don’t like to feel all drugged during the day. So I just deal with it the best way I know how. I do a lot of praying.

Please say a prayer for me. I am just trying to make until Monday. I don’t want to go into the ED. I need to wait until Monday so I can see my doctor. Not whatever doctor is in the ED. By the way, no, I have never seen the doctor off of the bachelor out of all of the many times I have been in the ED. Believe it or not.

Quote of the day:

“Until we see what we are, we cannot take steps to become what we should be.”
~ Charlotte Perkins Gilman

Verse:

Seek the Lord and his strength, seek his face continually.
1 Chronicles 16:11

Thursday, April 27, 2006 9:35 AM CDT

Boy do I have some stuff to tell you about yesterday. After I posted yesterday morning I noticed that my JP (part of the drain) seemed to be hanging lower on my leg, like it had come out some. So I called and talked to one of the nurses, who told my doctor what was going on. His response was that as long as it was still draining and I could still flush it than he wasn’t worried about it. It was still draining and I could flush it. So I went on with what I was doing around the house. A little later I noticed that the JP wouldn’t keep a “charge”. I deflated it and closed it up. But it re-inflated. I tried this several times with no success. So I called back once again. This time they put me through to the doctor. He told me to come on in and he would inject dye and probably change out the tubing and guide wire. The only problem was that I had eaten at about 9:30 am, which meant I wouldn’t be able to have conscious sedation before 3:30 pm. It was only 11:30. As I was changing clothes believe it or not, that drain fell completely out of my hip! So I called the doctor back again. He said to come in now. I knew something was not quite right with that drain.

I was not happy at all about the prospect of having that drain re-inserted without sedation. I experienced that last Thanksgiving day when they put the drain in. I remember everything about it. It was extremely painful and I kept on telling them, “It hurts. It hurts.” I was a scared little girl.

We got there by 12:30 and they were packed out with people. At first we thought we would just let the doctor look at it and schedule to have the drain put back in the next day. But he vetoed that. He said that the tract might close up before I got back. I was not happy at all about this.

But by the time they had a room ready for me I could have conscious sedation. I remember looking at the clock once I was draped and waiting for the medicine to kick in, it was 10 till 4. This time was kind of scary and weird, my chest felt really tight when she gave me some of the medicine. I remember her asking me if my heart normally beat that fast. But by that point I was drifting off to Never Never Land.

When I woke back up I was in recovery and Bennie told me I had not 1 but 2 drains now coming out of my poor right hip. Talk about an invasion. If you have ever had conscious sedation you know that at first you can’t remember anything that people say to you. So you ask the same questions over and over again. I thought I had dreamed that I had 2 drains. When I got awake enough that is the first thing I did…look to see what was there. Yep, I have 2 of them hanging right there. One of them goes into the abscess and the other goes into my small bowel. Hopefully I will be able to get the one out of the abscess in a couple of days. If it has done everything it needs to do. Then we can fibrin glue that part and move on to the next.

This morning I had the most wonderful surprise. My “down the street” buddy brought me a homemade buttermilk pie. She said that she had read I could eat again and that that was her favorite pie. It looks absolutely delicious. I can’t wait to try it. I am so thankful that the doctor didn’t put me back on TPN. Thank you Lord for the ability to eat!!!!!!

Things I Am Thankful For This Morning

The beautiful sunshine outside my window.

Both my boys being home with me.

My parents, they are the best.

Special friends that surround me with love and support.

And of course, not being on nasty ole TPN…ha ha

What are the 5 things you are thankful for this morning?

Quote of the day:

“The words “thank” and “think” come from the same root word. If we think more, we would thank more.”
~ Warren Wiersbe

Verse:

I will thank you, Lord, with all my heart; I will tell of all the marvelous things you have done. I will be filled with joy because of you. I will sing praises to your name, O Most High.
Psalm 9:1-2

Wednesday, April 26, 2006 8:10 AM CDT

Good morning!

Well yesterday was a reversal of roles for the Crowe family. I had to go with Bennie to have a CT scan done of his abdomen. He thought he had a hernia. But as it turns out he has diverticulitus in two sections of his colon. So he is taking an antibiotic and has to watch his diet. He has to stay away from anything with seeds or nuts. I think he was relieved it was that and not a hernia.

I hate to say this, but it was entertaining watching him go through something that I have done a million and one times. For one thing, I could tell him what to expect and how things would go. So there wasn’t any unknown for him. He was a big boy and drank down 2 bottles of contrast. They gave him the banana flavored one, so that was in his favor. Believe it or not banana is the easiest to get down.

Shortly after he finished with the scan the bathroom trips began. He couldn’t stay out of the bathroom…you know getting rid of that nasty ole contrast. Plus, on top of that he was up most of the night, couldn’t sleep.

Bennie talked to his younger sister and she said that he was getting just a glimpse of what I go through all the time. But you know how I feel about people saying that. Everyone has their own journey. We can all make a difference.

I do think that it has given Bennie a new understanding of what I go through. But I have to say, he goes through this every step of the way with me. Now he has just had personal experience in it.

I am so thankful that Bennie is okay.

Other than that, I don’t have any doctor appointments this week. My drain output was 13 cc yesterday and today. The 2 days before it was 10 cc. So I will call today to get my appointment set up to have the drain injected next week. I hope and pray that there is not a connection to the small bowel or my lymphatics. I hope the abscess has collapsed down and the doctor will be able to fibrin glue it and take the drain out for good. Oh what a happy day that will be. I have had a drain in my hip since Thanksgiving Day.

Well, I am feeling a little better today. I have been having trouble with lack of motivation, just not wanting to do anything but lay down. That is so unlike me. I have always loved to run around, go to the mall and so on. But for the last week that isn’t the case for me. Although today I feel a little more energized. Even though it is such a rainy, stormy kind of day.

So if you have a minute please leave me a note on my guest book or send me an email. It will chase away these clouds surrounding me. Thank you so much to all of you that take the time to put a little sunshine into my world.

Quote of the day:

“The Christian on his knees sees more than the philosopher on tiptoe.”
~ D. L. Moody

Verse:

Humble yourselves before the Lord, and he will lift you up.
James 4:10

Sunday, April 23, 2006 8:17 PM CDT

Today is my favorite day, Sunday. But I didn’t go to church today. No, Zach and I went to spend the day with my parents. Today is a sad day. It’s the 12th anniversary of my brother’s death (Dusty). I always make sure I spend that day with my mother. We all had a good time and laughed. I needed to be with Diva as much as she needed to be with me. And of course, Mr. Personality, Zach, kept us in stitches. It was a good day.

So now you wonder what is going on this week. My home healthcare nurse will come tomorrow to change my PICC line dressing. Plus, I have to change the drain dressing. I am scheduled for my lower scope this Thursday. But I have decided to re-schedule it because Zach and I are spending the day together on Thursday instead. No doctor appointments this week.

The drain output is steadily getting less and less. This morning there was only 10 cc. If I have another day or 2 of that or less than the doctor can do the dye injection to see what we are dealing with. I would really like to be free from that accessory for the summer.

That’s really all I have to post for now. Oh, but I will add to spread your love around to the people around you, share your happiness. It will brighten their world. Each of you cannot know how wonderful and special you are in my life. Thank you for sharing this journey with me. The pathway is so much easier when taken with friends.

Quote of the day:

“Happiness is something that comes into our lives through doors we don’t even remember leaving open.”
~Rose Wilder Lane

Verse:

Happy are the people whose God is the Lord.
Psalm 144:15

Friday, April 21, 2006 1:42 PM CDT

We are back home again. This morning we had to be at Vandy at 6 am. Which meant we had to get up at 5 and on such a stormy morning. But anyway, I’m going to backtrack to catch you up. Then I will get to today’s procedure.

You know yesterday I said that my drain output was more. Well, it was actually twice as much as the day before. So I was sure what that meant. Bennie and I talked about it. Then a little while later he asked me when I was going to call my surgeon. I asked if I had to call him. Couldn’t I just call the interventional radiologist (he put the drain in)? So I opted to call the radiologist. Because I knew without a doubt if I called my surgeon he would snap that TPN back on me quicker than lightening. The doctor I called said that he wasn’t that concerned about the output because we are trying to drain this abscess. He said that we would wait for it to get down to 5 or 10 cc a day or 2 weeks, whichever comes first. Then do the dye injection test to see how things look. Depending on how things look it is possible I will have to start back on TPN then. But my prayers were answered about this so I will continue to send them up to my Father. And enjoy eating.

Well, today was an early morning for the Crowe family. Zach actually spent the night with Becky last night so she could get him to school for us. I don't know what we would do without her help. She is always there and always willing to help.

I had to go this morning to have the stent in my right ureter replaced. The procedure only takes about 30 to 45 minutes. But they put you under general anesthesia, not just conscious sedation. After my urologist was done he came back to talk to Bennie. He told Bennie that he had decided he would start changing my stent out every 4 months, instead of waiting 6 months. I could have told him that was a better plan. He told him also that the stent was all gunky, time to be replaced. That’s the reason I got that nasty UTI. That’s what happens when stents are on their last leg so to speak. It is my experience that a stent does best for 3 to 4 months for me. So I am glad he realizes that also. Chalk another one up to (honorary) Dr. Crowe.

It was 11:00 by the time they let me leave. Bennie took me to Cracker Barrel to get some breakfast. Just something little and light. I was so thankful to be eating that. Because just yesterday I was so sure that I would be back on TPN. So, yes, yes, thank You, Lord for answering my prayers. It was absolutely delicious!

I am very sore and my pain level is up there for right now. But that’s just part of getting use to the new stent. In a couple of days I will be as good as new.

I hope you all have a most wonderful weekend!

Quote of the day:

Thank You Lord for Your grace, love, and mercy.
~ Stephanie

Verse:

The Lord preserveth all them that love him.
Psalm 145:20

Thursday, April 20, 2006 7:40 AM CDT

I have no clue when I will be able to post this because my internet has been down for a day and a half.

You are not going to believe this. Tuesday I had to call my nutrition doctor to let them know I was off of TPN. She called me back and said that my surgeon wanted me to stay on it for at least 6 more weeks! I said, “No.” So she told me to call him. I called his office and told him I was very upset with him. He acted all cool and said “About what?” I told him that that was a very bad joke. Then we discussed whether to do TPN longer, not do it, and any other option we could think of. So for this moment I am enjoying being able to eat again. Who knows for how long though.

I was back at my “second home” again yesterday. Friday will make 3 times this week at Vandy. Yesterday I had to go because my PICC line was clogged. I tried to flush it this morning and it just wouldn’t budge. So my home healthcare nurse came by and tried with no lucky either. She told me to call the doctor, who told me to come in. When I got to the PICC line service they tried to flush it a couple of times. But couldn’t get it to work. So they had to resort to some special medicine to dissolve the clog. It took forever for her to be able to inject it into my PICC. Then we had to wait an hour to see if it worked. Thankfully it did. But the nurse told me I need to be flushing with saline and heparin everyday. Which is completely different than what they told me when I got it placed. Oh well, I’m just glad to have it fixed.

My next big thing is on Friday, getting my stent changed out. That always makes me feel a little yucky for a couple of days. You have to get use to a stent. After that I don’t have anything until the following Thursday. It’s time for the dreaded scope. Oh yes, that time. The getting ready for it is gross but at least I get to sleep through it. Big girl decided to take the easy road. In the past I have always had it done in the doctor’s office fully awake. It’s no fun. Especially if they see some polyps. But anyway, I don’t have to worry about that…just go to sleep.

Well, it’s Thursday morning and the stormy day matches the way I feel on the inside. My output from the drain has increased since I started eating, which means I will have to go back on TPN. I’m sure it will be for 6 weeks this time since that is what the doctor wanted. I’m not looking forward to it at all. I’ve only gotten to eat 2 days. Oh well, I guess I am going to have to cowboy up whether I want to or not. I can’t live with a drain in my side for the rest of my life. So it’s time to pull out the boots and hat.

Please pray for my emotional and physical well being while I am going through this. Being on TPN npo is so very hard on many different levels. Everything we do socially has to deal with food. It’s hard to see and smell it but not be a part of it. It’s tough on my boys too because they try to eat outside of the house. So we don’t have that family sit down dinner time. So please pray for my boys and me. I’m very sad today.

Quote of the day:

“Prayer is an indispensable part of our relationship with Jesus Christ.”
~ Laurel Oke Logan

Verse:

Pray without ceasing.
1 Thessalonians 5:17

Tuesday, April 18, 2006 8:46 AM CDT

What a difference a day can make.

Yesterday when the doctor came back to tell us that the abscess was back I was crushed. I have had one of these drains since Thanksgiving. Not the prettiest accessory you’ll see. I was sad and scared because this doctor is going to talk to my surgeon. He thinks it’s time to do surgery if the drain doesn’t work this time.

After he told us all of that I just sat there…staring at the wall. I had been knocked back down again and didn’t know if I had the strength to get back up. Bennie tried to make me laugh. We had been laughing and having fun earlier. But now nothing seemed funny to me. I don’t want to have more surgery.

Even my doctor said something about the way I looked. He said that I am always upbeat and positive. He didn’t know what to think about the beaten up Stephanie. I try very hard not to let that show. But sometimes it gets to be too much to handle.

What a difference a day can make.

This morning I am feeling pretty good. The drain isn’t bothering me. It’s draining good. Oh and I’ve already had to work on it. This morning when I got up it fell to my feet. After all I’ve been through it didn’t phase me. I just picked it up, screwed it back together, and cleaned up the blood.

I have more good news….
I am no longer on TPN. I can eat again! I just have to take it slow. I’m not sure what I am going to eat today. But I do know that I will enjoy every single bite.

What a difference a day has made.

Quote of the day:

In your greatest weakness, turn to your greatest strength, Jesus.
~ Lisa Whelchel

Verse:

“My grace is sufficient for you, for My strength is made perfect in weakness.”
2 Corinthians 12:9

Monday, April 17, 2006 11:44 AM CDT

Through sheer determination and prayer (and quite a few extra strength Tylenol) I got to spend Easter with my boys. We went to church and had a wonderful service. Then we went to Bennie’s sister’s house for lunch. They were all having lasagna. She fixed me some potato soup and yes I ate a few spoons. It was great!

Since Friday I have been fighting this temp. It has gotten as high as 101.7. This morning when my home healthcare nurse came to draw my labs and change the dressing I told her. She immediately said to call the doctor. I got through to him and he said I should come in for another CT scan. He expects that he will have to place another drain in my side. He also told me that he was getting to the end of what he can do to take care of this without surgery. He said there are only so many times he can put a drain in and fibrin glue. He is going to talk to my surgeon. I definitely do not want surgery.

I am hoping this temp is due to something else. I have a couple of things going on; UTI and my PICC line is red. So maybe it’s one of those that is the cause of the temp.

I need to stop here to get ready to go to my “second home”. I will let you know what we find out. Please say a prayer!

Quote of the day:

“True faith is never found alone; it is accompanied by expectation.”
C. S. Lewis

Verse:

But happy are those…
Whose hope is in the Lord their God.
Psalm 146:5

Saturday, April 15, 2006 5:54 PM CDT

Well, just as Bennie and I expected, my temp was up this morning. It got as high as 101 earlier. I am trying to make it until Monday though. Because I want to go to church with my family. I don’t want to spend yet another holiday in the hospital.

So far our prayers are being answered. This afternoon my temp is down and I’ve had a pretty good afternoon. We had lunch with my parents. Plus, Diva and I got to do a little bit of shopping

Please keep me in your prayers. I want to spend Easter with my family. Not in the hospital. I’m just stubborn enough to make through too.

I am wishing you all a very joyous Easter!

Quote of the day:

“Do not pray for easy lives; pray to be stronger men. Do not pray for tasks equal to your powers; pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but you yourself shall be a miracle. Every day you shall wonder at yourself, at the richness of life which has come to you by the grace of God.”

— Phillips Brooks

Verse:

Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.
Hebrews 4:16

Wednesday, April 12, 2006 3:34 PM CDT

“I’m tired of trying to make my doctors better doctors.” I say that jokingly.

Today did not go as I had hoped and prayed it would. While we were waiting to have my CT scan my doctor came to talk to us. He explained that the time before last the abscess had a connection (fistula) to the small bowel. So he fibrin glued it and pulled the drain. The abscess recollected. This time it showed a connection to the lymphatics. Something completely different. He had me injecting betadyne to close off the connection.

Today he wanted to do the CT scan and also inject the drain to see how things looked. He mentioned 2 more weeks of TPN and I was upset. He said that we would wait to see how things looked. His reasoning is that we need to do every thing we can to work this out because we are getting close to surgery and that’s not a road any of us want to go down, especially me.

One good thing, he pulled the drain today. I’m happy to be rid of that accessory. But at the same time, I’m a little scared. Usually within 48 hours to a week the abscess recollects. I am praying that won’t happen this time.
After the doctor finished he asked me if I would do 1 more week of TPN. I guess you could say I was pouting pretty good. I reluctantly agreed to another week. I told him that I had cheated some with ice chips, occasional sips of tea, and licking chips. I did make it through the first week without anything and barely my sanity. He told me that I was a big girl and he knew I would do okay that those things weren’t bad.

Now for the disheartening part of today. When he injected the drain there wasn’t a connection to the small bowel or the lymphatic. But there was still a collection. He went ahead and pulled the drain knowing that it could mean putting it right back in. He’s never seen anything quite like this, can’t explain it.

Now I will tell you my progression of feelings during all of this. First, I had my pout face on. Next came the fight to keep the tears at bay. Sometimes the journey gets so tough. And you get tired of being beaten down. Then came the disappointment and worry. I was worried that they would never figure this out. But I realized that God was telling me, “Be patient Stephanie. I am working on it. Remember it’s not your time but mine.”

So I will be patient, or at least try. I know the Lord still has work for me to do. People tell me all the time what my journal means to them and I am blessed by that. The wonderful thing is that so many people are praying for me. Some that maybe never prayed before are praying now. Today one the car hops from Sonic told me that she was praying for me. How wonderful is that? What a boost to my spirit. Your continued prayers lift me up. Thank you.

Okay, so when I was planning on today being the day, the day to eat again, I had decided that I wanted white chicken chili. Guess what? Bennie took me there for lunch. Of course, I only sipped the broth. But oh how absolutely good it was. It only took a couple of spoons and I was full and satisfied. I can do this. I can make it through another week with God’s help and your prayers.

After my quote and verse of the day I am going to end my post with the lyrics to Praise You In This Storm. I heard this on the way home and was moved to tears. I will praise Him in this storm. Please take the time to read it. It is a beautiful song.

Quote of the day:

“The devil can’t take my faith because I am a child of God.”
~ Stephanie

Verse:

Now faith is the substance of things hoped for, the evidence of things not seen.
Hebrews 11:1

Praise You In This Storm by Casting Crowns

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen"
and it's still raining

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away

Chorus:
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away

Chorus

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Repeat

Chorus

Tuesday, April 11, 2006 12:35 AM CDT

I’m hungry! I’m hungry! It’s lunchtime and the ole stomach is growling like crazy. I told Bennie and Diva that if the doctor doesn’t let me eat tomorrow I might go postal on him. Tomorrow will be the day.

I’ve had a busy morning so far. I saw my urologist to discuss having my stent changed. He said that he would rather replace it than try to remove it. His reason is in case I should have trouble with that kidney again and he couldn’t get a stent in then he would have to put a nephrostomy tube in my back. I told him the stent was the least of my worries right now. After that I had to go to Pre-op to do all that stuff to prepare for the stent change. I’ve been there so many times that they just kind of hit the high notes with me now. Some of them know me. Some of them just see how thick my file is now and know I’ve been there, done that, a few times.

Now I’m back home waiting for the infusion company to deliver my TPN formula and supplies. They are delivering 8 days worth! I called this morning and ask if they could just send 1 for tonight. But they had orders for 8 days and had already filled it. It will be too bad that I have to throw away 7 bags. But, oh well. Tomorrow is the day. I can’t wait.

It’s a beautiful Spring day. I hope you get to get out and enjoy it some. I’m going to soak up some sunshine.

Quote of the day:

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”
~ Helen Keller

Verse:

But blessed is the man who trusts in the Lord, whose confidence is in him.
Jeremiah 17:7

***It will probably be the evening before I get to post tomorrow.

Monday, April 10, 2006 12:34 AM CDT

As I sat in church last night, listening to our wonderful choir present their Easter musical to us, I thought to myself…How small is what I am going through compared to what Jesus endured for all of our sins. Amazing grace, yes that is what it is and amazing love. It’s a love that we cannot fathom. That He would die to save all of us. I sat there listening to the music with my TPN backpack beside me. I was so happy to be there to be able to be a part of this. The choir did such a great job. Thank you for the time it took to prepare this for all of us to enjoy.

This week I am spending a lot of time reading scripture, listening to praise music, and preparing my heart for Sunday. I believe some people get caught up in what dress they are going to wear, getting clothes for the kids, Easter baskets, Easter dinner, and so on. By the time they take care of all of that they are worn out and can’t give their full heart to what Sunday really means. The new clothes, Easter baskets, and Easter dinner are all just things. The true gift is of course Jesus.

The sun is shining brightly outside my window. I smile as I see it because it’s like a promise to me that things will get better. Hopefully I only have 2 more nights of TPN. I am anticipating eating Wednesday afternoon. I told Bennie I was going to kick my doctor if he says I can’t. Just kidding about that. But Wednesday seems like the perfect day to eat. I think I already know what I want to have. We’ll see if it’s the same thing Wednesday. Who knows.

Please continue to pray that Wednesday will be the day. I am so ready to be rid of these “accessories”. What a blessing it will be to me to be able to enjoy Easter dinner with my family. I will continue to walk by faith. Blessings to you all.

If you have a moment please leave a note on my guest book. Your notes do make a difference in my day.

Quote of the day:

“Simple gratitude helps us experience God at work in every moment of every day.”
~ Harriet Crosby

Verse:

But you are a shield around me, O Lord; you bestow glory on me and lift up my head.
Psalm 3:3

Saturday, April 8, 2006 10:51 AM CDT

I am home again with the boys. I am so happy to be home with them. But it is a double edge sword though because I miss my mother. I actually cried yesterday when I left. We had so much fun just being together. Diva really help me stay busy and keep my mind off of food.

Although I do have to admit that I have crossed the border….I started licking chips a couple days ago. I know, I know, it sounds so funny. But it’s wonderful. Because I miss the taste of things and the feel of cold. Yes, I am eating ice chips also. I figure they give them to you in the hospital so I just won’t go overboard. I eat less than half a glass of crushed ice over the course of a day.

Being on TPN (npo) is really hard on a person. Because our lives are surrounded by food and eating. Practically every commercial, no matter what it’s about, has food in it. You would be amazed. When you can’t eat every where you turn there it is staring you in the face. It’s just so hard. I try to laugh about it and say what I am going to have when I can eat again. Almost every restaurant I pass by I say that I am going there and what I will have to eat. My list is getting pretty long. I can’t wait to get started on it.

Okay so this week I have a few appointments. On Tuesday I have to see my urologist and pre-op. It is time to have the stent in my ureter changed. These stents can only stay in so long. I will have this done in a week or two.
Then on Wednesday I go in for yet another CT scan, drain check, and hopefully drain pulled with fibrin glue. Plus I am praying that I can start back eating. I will settle for being able to drink. So this could mean only 4 more nights of TPN. I hope and pray with all my heart.

I have to praise God here for His protection over my parents yesterday. Tornadoes ripped through where they live. The subdivision before theirs was demolished. There are at least 8 known deaths in that area. I’m thankful also that I did come home because their power went out yesterday afternoon. I would have lost all of my TPN solution. So I know all of this was a definite God thing. I praise His name and am so thankful for His mercy and grace.

I am glad to be back so I can post. I missed being able to. But I felt very deeply that I needed to take that time and enjoy being with my parents. It was such good medicine for my spirit. Please be in prayer with me about Wednesday. I am really counting on being able to actually eat Wednesday afternoon. I don’t know what I will have. I just know I would love it to be a little more than ice chips and licking chips.

I hope you all have a wonderful day. Blessings to you all. Thank you to all of you that have sent me emails and left notes on my guest book. They are such a blessing to me and lift my spirits. Thank you for taking the time and for caring.

Quote of the day:

“Do not pray for easy lives; pray to be stronger men. Do not pray for tasks equal to your powers; pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but you yourself shall be a miracle. Every day you shall wonder at yourself, at the richness of life which has come to you by the grace of God.”

— Phillips Brooks

Verse:

Jesus said unto him, If thou canst believe, all things are possible to him that believeth.
Mark 9:23

Saturday, April 1, 2006 8:50 AM CST

TPN started officially last night at 7:00. So the night before last wasn’t the last meal. Although it was the “last supper”. I got to have lunch yesterday. I asked my doctor (nutrition doctor) if I could have lunch. His answer to me was, “I’m not going to say you can’t.” That was all I needed to hear. Bennie wanted to take me to someplace special and nice. So we went to The Cheesecake Factory and had the most wonderful lunch. I was stuffed. To bad the fullness won’t last the whole two weeks. Oh, and the doctor told me that TPN could be longer than 2 weeks, depending on how things look. Well, that is just not something I want to think about right now. I wish I could blink my eyes and the 2 weeks would have gone by. Eating is such a major part of our lives. A lot of times, socially that is how we interact. So to not be able to be a part of it really plays on a person’s mind.

My TPN cycles are from 7 pm to 7 am. Last night my home healthcare nurse came to make sure I understood how to set every thing up. She will be back Monday morning to draw blood for labs and change both of my dressings. Last night went pretty smoothly. Although I did wake up in the middle of the night thirsty. It could be a long 2 weeks.

I have a request. I know you are all praying for this to fly by fast and to do what it needs to do. But I am asking you to please, please flood me with notes on my guest book and emails. Share your favorite quotes with me. Your favorite verses. Even a joke. Whatever is on your heart. Just share with me. What a strength that will be to me. I love you all so much and am so thankful for all your love, prayers, support, and friendships.

Quote of the day:

“Live with your whole being all the days of your life. Your reward will be true happiness.”
~ Rebecca Thomas Shane

Verse:

Make a joyful noise unto the Lord, all ye lands. Serve the Lord with gladness: come before his presence with singing.
Psalm 100:1-2

Thursday, March 30, 2006 2:51 PM CST

The next two weeks stand before me like a vast abyss.

Yes, TPN officially starts tomorrow. Today is my last day to eat or drink anything at all for the next two weeks. That even includes no gum or mints. When I have to do this I always miss the taste of foods more than the actual eating. But licking chips is not an option this time. Ha ha No cheating. Please pray that this two weeks fly by fast for me.

Well, I guess I should catch you up on all that happened yesterday. My interventional radiologist called me back to tell me to come on in to have a CT, drain replacement and repositioning, and PICC line placed for TPN. I knew it was coming to that. But what a shock, right there. If I would have known I would have eaten supper the night before. You know, the Last Supper. But you know things just work out in that arena. They couldn’t get me set up with the infusion company and my nutritionist until Friday. So I can eat and drink today.

But back to yesterday. I was in a lot of pain and the drain wasn’t putting out very much. So I knew the abscess had most likely collapsed. And it had. They had trouble getting an iv in me because I hadn’t had anything to drink all day. After four painful sticks I finally had an iv. The ct scan went smooth. Then it was over to the ROCU to get ready for my procedures. Once I was taken back to the procedure room and they were prepping me (it’s the same prep as surgery) I got a little nervous. Thankfully my nurse saw by my blood pressure that I was slightly nervous. So she went ahead and gave me medicine to put me out. My last thought was a song. Are you really surprised? But it fits.

Chorus to I Will Walk By Faith by Jeremy Camp

well i will walk by faith
even when i cannot see
because this broken road
prepares your will for me

See how it fits. Sometimes all we have to guide us down the scary road is our faith. Knowing that God loves us more than we can fathom. So I will walk by faith. Even when I am broken I still see His face.

I woke up in recovery pretty sore. I got a bit of good news though. They couldn’t get my TPN set up until Friday. So that meant I could eat until then. I got myself woke up good and walk right out of the hospital. No wheelchair for this girl. Bennie took me to get something to eat. I hadn’t had anything since 6:30 the night before. Almost 24 hours at this point. I ordered something I really like and usually eat all of. But I couldn’t clean my plate this time. And I didn’t feel quite right. We got finished and headed home. We had to stop by Walgreens to pick up some supplies for my drain. I didn’t even make it home…threw up and threw up. Luckily I made it to the restroom. We got home and I threw up more. I took my temp and it was 101. I felt so bad. I kept thinking this isn’t right, being this sick.

Today I have been under the weather. We are assuming that it is just a virus. Please, please remember me and my boys in prayer, especially this next two weeks. Thank you for all of your prayers yesterday.

Tomorrow I have an appointment with my nutrition doctor and then one with my ID doctor. Then sometime during the day tomorrow the infusion company will bring all my TPN supplies. Plus, I will have home healthcare again. Busy day.

Quote of the day:

“Pray hardest when it is hardest to pray.”

— Bishop Charles H. Brent

Verse:

Pray without ceasing.
1 Thessalonians 5:17

Wednesday, March 29, 2006 9:02 AM CST

I heard back from my surgeon. He agreed with “Dr.” Stephanie about having the drain checked. So I called his secretary for her to set it up. She set it up for Thursday at noon. But last night I received an email that he forwarded to me (he sent it to my surgeon’s secretary) that he would be out of town Thursday through Tuesday of next week. I don’t want to wait another week on this. So I am not eating or drinking this morning in hopes that they can squeeze me in today. I can’t call to check on it until 9:00. I hate to be a pain. But this is a major pain in my side. So hopefully it will work out today.

Today I want to wish my KS buddy that honks every time she goes by my house a very happy birthday. It definitely looks like a beautiful day is in store for us. I love ya girlfriend!

I really don’t have much else to post. At least not until I hear the word.

Quote of the day:

“Remember God’s love and grace can carry us through any trial.”
~ Stephanie

Verse:

And we know that all things work together for the good to them that love God, to them who are the called according to his purpose.
Romans 8:28

Monday, March 27, 2006 1:17 PM CST

**** I actually posted this entry early this morning. But the website was down. So good afternoon now.

Monday morning again. A brand new week begins. Zach has more doctor appointments this week than me. Now that’s saying something. He has to go to the dentist one day and the orthodontist the next. Me? I only have to go to see my ID (infectious disease) doctor on Friday. I actually saw her in the elevator when I was discharged from the hospital last week. So she already has a heads up on what’s going on. The reason I have to see her is because of all the abscesses, bacteria in them, and fevers. No, you can’t catch anything I have.

Last night I emailed my surgeon to update him on my “accessory” pain, low grade temp, and drainage. So now I wait. I am wondering if the drain needs to be repositioned or something. Although my drainage amount is steadily getting lower and lower everyday. Wouldn’t it be great if I could just have it pulled and fibrin glue done? What a marvelous day that will be!

5 Things I Am Thankful For This Morning

1. My music - I love to sing in the morning
2. The ability to keep up with family and friends with my journal and through emails
3. The love, support, and prayers of my family and friends
4. Easter, yes it will be here before we know it
5. The beautiful daffodils everywhere you look. I love them. That and daisies are my favorites.

What are the 5 things you are thankful for this morning? Stop for a moment and think about that. Every day our day is filled with wonderful blessings. Those where just the first 5 I thought of for my day.

Quote of the day:

“Joy is what happens to us when we allow ourselves to recognize how good things really are.”
~ Marianne Williamson

Verse:

Hitherto have ye asked nothing in my name: ask, and ye shall receive, that your joy may be full.
John 16:24

Saturday, March 25, 2006 11:40 AM CST

Good Saturday morning to you all! The sun is shining. It looks like a beautiful day outside my window. I am happy to be here.

My routine every morning while I have my little “accessory” is to empty the JP drain, measure the drainage and record it, and then inject 10cc back into the drain. This morning I am pretty excited because the amount I drained was only 15cc. Just 2 days ago it was 25cc. So I am steadily getting closer to where I need to be, which is below 5cc. A week from tomorrow I go for my CT scan. Yes, it is next Sunday. Then the next day I see my surgeon. Hopefully he will have some really good news for me.

I would like to share some thoughts with you. Just about every day someone says to me, “Oh, I shouldn’t be complaining to you.” or “Mine is nothing compared to what you are going through.” or “How do you smile and go along. I couldn’t if I were you.” Some of you already know my thoughts on all of these. First of all, you can’t compare my journey to yours or anyone else’s. Why? Because God knows what each of us can handle. Even when we aren’t so sure ourselves. So to compare my journey to what you are going through just belittles God’s work. Our job, our work, is to be an encouragement to others around us. To be a bright, sunshiney spot in their day.
Second of all, sharing with a friend is not complaining. I’ve definitely learned that one. If you talk to a friend it helps them pray more effectively for you. So share.
Third of all, I smile because I am a child of God’s and He loves me. He walks this path right beside me and picks me up every once in a while when the journey gets too tough. If you know that in your heart and soul you can smile too.

Quote of the day:

“God will never lead you where His strength cannot keep you.”
~ Barbara Johnson

Verse:

Our soul waiteth for the Lord: he is our help and our shield.
Psalm 33:20

Thursday, March 23, 2006 8:02 PM CST

Cause I’m not who I was when I took my first step
And I’m clinging to the promise you’re not through with me yet
So if all of these trials bring me closer to You
Then I will walk through the fire if You want me to

*Chorus to If You Want Me To by Ginny Owens

This song is one of my many favorites. Every time I hear it, it brings tears to my eyes. My heart can feel the depth of this song. Many times over this last three years this song has been such an incredible source of comfort to me. I am so thankful Ginny Owens shared it with us.

If you aren’t familiar with this song I am going to end tonight’s post with it. Please read all the words.

Sorry it has taken me so long to get this post on here. I have had trouble with my internet today. I’ve just now been able to sign on. Didn’t mean to worry anybody. No, I’m not back in the hospital. Although, you never know with me. Ha ha

I am having a pretty tough time with pain from the drain and surrounding area. My level is a strong 7. The skin around the drain is so tender that it actually hurts for anything to touch it. I guess my hip has just had enough abuse.

I told Bennie today that the doctors need to get this abscess fixed. Because warm weather is coming and my “accessory” just won’t go with skirts or shorts. So they are on a schedule. I am willing to do 6 weeks of TPN if that is what it takes. I am tired of the “accessories”. But also in the same breath, thankful for them. I say thankful because it is amazing how quickly it makes me feel better once the drain is placed. So, yes, I am very thankful for the “thorn in my side”.

No doctor appointments tomorrow. It’s already shaping up to be a fabulous day! Plus it’s the start of the weekend.

Take a moment and leave me a little “sunshine” on my guest book.

Quote of the day:

“Neither genius, fame, nor love show the greatness of the soul. Only kindness can do that.”

~ Jean Baptiste Henri Lacordaire

Verse:

She openeth her mouth with wisdom; and in her tongue is the law of kindness.
Proverbs 31:26

If You Want Me To - Ginny Owens
The pathway is broken
And the signs are unclear
And I don’t know the reason why you brought me here
But just because you love me the way that you do
I’m gonna walk through the valley
If you want me to

Chorus:
Cause I’m not who I was
When I took my first step
And I’m clinging to the promise you’re not through with me yet
So if all of these trials bring me closer to you
Then I will go through the fire
If you want me to

It may not be the way I would have chosen
When you lead me through a world that’s not my home
But you never said it would be easy
You only said I’d never go alone

So when the whole world turns against me
And I’m all by myself
And I can’t hear you answer my cries for help
I’ll remember the suffering your love put you through
And I will go through the valley
If you want me to

God bless you all.

Tuesday, March 21, 2006 11:13 PM CST

God is in control
We believe that His children will not be forsaken
God is in control
We will choose to remember and never be shaken
There is no power above or beside Him, we know
God is in control
chorus to God Is In Control by Twila Paris

Thank you Richard for telling me about this song. Yes, God is most definitely in control. He is so good. I am back home again…after another “tune up”. I have good news and bad news. The bad news is that the abscess is back and fairly large. So I am no longer “accessory free”. Yes another puncture hole in the ole right hip. Goodness that hip is going to look like a honeycomb before they are done with me.

Now you want to hear the good news?
My surgeon said that it looks like my tumors are melting away. The big bad one that has given me so much trouble use to be the size of a lemon and is now the size of a ping pong ball. That was the best news. I felt like dancing…on the inside I was dancing. The ole hip is still too sore to really dance.

When my doctor came by today we talked about all of this and he admitted to me that he had almost become discouraged about how things were going for me. But this scan made him feel much better. He said that we would continue with this “accessory” to drain the abscess. From there if I am still having trouble then I will have to do 6 weeks of TPN. If all else fails then it will mean more surgery. Definitely not something I want to do.

But hey, I gotta tell you this. I named the tumors while I was in the hospital. Are you ready? Gladys Knight and the Pips. The mean one is Gladys and the others are the Pips. It made me laugh when I said it. Hope it brought a smile to your face.

It’s getting pretty late so I will stop here for now. Pain level is still up there. But it is just from being messed with once again. This too shall pass.

Quote of the day:

“He is most glorified in us when we are most satisfied in Him.”

~ John Piper

VERSE:
May the God of hope fill you with all joy and peace as you trust
in him, so that you may overflow with hope by the power of the Holy
Spirit.
Romans 15:13

Sunday, March 19, 2006 6:27 PM CST

Today is Sunday, my favorite day. I didn’t make it to SS or church, although I tried to. I’m just feeling too bad…again. My temp keeps spiking up to 101. I can get it down to 99 with Tylenol. 99 still makes me feel yucky because my temp normally runs high 96 to low 97. So we are trying to limp through today. Because tomorrow is Monday, the doctors will be in. We just don’t want to go to the ER today. Last time we did it took 27 hours (laying in the ER) for them to get me a room. So you see why I am, we are trying to make it until tomorrow.

I feel pretty bad so this post is going to be short. I will post more later. Hopefully tomorrow.

5 Things I Am Grateful For
______________________

1. My strong belief and faith in my heavenly Father
2. My boys taking care of me today
3. Getting to spend the night with my parents (It’s never long enough though)
4. Believe it or not, my heating pad. Don’t know what I would do without it during
times like these.
5. The assurance of prayer being sent up for my family and me

Quote of the day:

“We could never learn to be brave and patient if there were only joy in the world.”
~ Helen Keller

Verse:

Teach me your ways, O Lord, and I will walk in your truth.
Psalm 86:11

Please take a moment to brighten my day with a note on my guest book or email. That moment you spend means the world to me, boosts my spirits. Right now I could use that with the thought of having to have an “accessory” once again. Talk about bumming a girl out.

Friday, March 17, 2006 9:17 AM CST

HAPPY ST. PATRICK’S DAY!!!!!!!!!

I hope you remembered to wear your green. If not, oh well, you’re fair game.

This week has been kind of quiet, which is a okay with me. No doctor appointments or other stuff. Thank you, Lord!
We are still watching my temp and the discomfort I have in my abdomen. Hopefully it will go away. I don’t want to have to have another “accessory”.

Today Zach and I are going out to my parent’s (Diva and the Big Daddy) house to spend the night. We love to go out there and just hang. So I probably won’t post until at least tomorrow evening.

Next week….I think I only have my flex seg. Which means 2 days of a clear liquid diet to get ready for it. I really don’t like the clear liquid diet. Oh well, I gotta do what I gotta do. At least I will be put to sleep for this scope. This is something that I have just started doing recently. In the past I just went into the doctor’s exam room and had it done (fully awake). Not the most fun or comfortable thing to do.

The other good thing about this scope is that it has been a year and a half since my last one. I have never been able to go that long. I have always had to go every 6 months. But since I have my j pouch, if things stay looking good, I can wait longer for scopes. YIPPEE!!!!

That’s really all I have for now.

Quote of the day:

“A hug is a great gift - one size fits all, and it’s easy to exchange.”
~Author Unknown

(So see how many gifts you can give today.)

Verse:

O give thanks unto the Lord; for he is good: for his mercy endureth for ever.
Psalm 136:1

Wednesday, March 15, 2006 9:06 AM CST

It’s a glorious morning here in the Springs. I am glad to be back after a couple of a couple of days out of town. Yes, we snuck off to Gatlinburg for a couple of days. We wanted to do something besides sit at the house for Zach’s Spring break. So, we left on Sunday and came home yesterday (Tuesday).

We let Zach take a friend of his and they had a ball. They talked “smack” all the way up there about how they were going to pick up “chickies”. I spent the trip laughing at them.

Oh, I have to tell you this, I almost had to go to the hospital for a couple of reasons while we were there. First of all, Sunday night I fell and severely hurt my ankle and foot. I could bearly stand on it. I thought I had broken a bone in my foot. Gatlinburg, not a good place to be with a hurt foot.
The second reason is that I was running a temp Monday night. Yes, a nasty ole temp. It got as high as 101 before Tylenol. So now we are on the watch mode. It spiked up again (100) last night. This is what usually happens with another abscess. But I am praying that I don’t have another one and that the fever is just some kind of virus or something. I don’t want to have to have another drain. It hasn’t even been a week yet since the last one was pulled out.

I promised to tell you how I hurt my foot. I have this bad habit of sitting on my foot if we sit at a booth in a restaurant. It helps me to sit up higher in the booths. I’m pretty short, you know. Anyway, we were about finished and I asked Bennie to let me out to go to the restroom. I step out on my left foot fine. But when my right foot touched the floor my whole leg collapsed under me. My foot had gone numb from sitting on it so long. Next thing I knew I was picking myself up off the floor. Zach’s friend was getting up at the same time to go to the restroom also and he said that when that happened it scared him. Zach said that I looked retarded…Thanks son. As soon as we got back to Nashville yesterday we stopped by Zach’s Godfather’s office. He is the best chiropractor in town. He examined my foot and ankle and took an x-ray. He told us that I had strained the ligaments and tendons in my foot and that can be more painful than a break. Let me tell you, it hurts. I hobble around like Hop Along Cassidy. My foot is so swollen and blue, looks weird. Denna, I know how you feel. I hope your foot is feeling better today.

All in all, we had a good time. But I am so glad to be back home. Bennie said that we might do some things around here that we’ve never done. You know, get to know our city better, touristy things. If you have any ideas please share them with me.

No doctor appointments this week and I want to keep it that way. I don’t want to go near Vanderbilt for any reason. Afraid I might get sucked in…ha ha. When Zach was a little boy he use to say I got sucked into the Gap. He hated to go into that store and I always had to look. So now you know the “sucked in” story. No, no I’m not getting sucked into Vanderbilt this week or anytime soon.

Before I close I have to wish a happy birthday to two friends on this day.

HAPPY BIRTHDAY GINGER!!!!!!!!!

HAPPY BIRTHDAY KENDRA!!!!!!!

I hope you both have a beautiful day.

A note on my guest book or an email would really brighten my day. And probably make my foot feel better…ha ha ha

Quote of the day:

“You may have to fight a battle more than once to win it.”
~ Margaret Thatcher

Verse:

Praying always with all prayer and supplication in the Spirit, and watching thereunto with all perseverance and supplication for all saints.
Ephesians 6:18

Sunday, March 12, 2006 1:14 AM CST

Saturday was another wonderful “accessory free” day. Saturday afternoon I got to see my Shoe Buddy. It had been a while since we had seen each other. So that was such a boost to my day. I love you Shoe Buddy. You brightened my day.

I am just so happy to be “accessory free”. It’s so wonderful to be able to wear whatever I want to, move and not hurt, and sleep on my comfort side again. I am blessed and so very thankful.

Quote of the day:

“You cannot be thankful and unhappy at the same time.”
~ Unknown

Verse:

Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

Friday, March 10, 2006 7:28 AM CST

What a wonderful morning it is. I am “accessory free”!!!! I truly enjoyed sleeping on my “comfort” side last night.

I should back up though and tell you what all happened. You know I had been counting down the days until I could get rid of the drain. So yesterday morning I was all set. The nurse told me that my doctor wanted to talk to me before the procedure. He came in and told us there were two options; A and B. I got the feeling he was leaning more towards option B which was to exchange the drain for one that would go back into my small bowel with a balloon at the tip. I was not liking that. But I tried to stay positive. Because after all, my God is bigger than that. Of course, option A was to pull the drain and fibrin glue the fistula. Once he injected the dye into the drain he told me that we would be doing the fibrin glue. I wasn’t surprised because I had such a calm about it.

They put me to sleep and I woke up (it seemed like a minute later) “accessory free” and no longer “stinky”. Today I can wear whatever I want to. No elastic pants for me today…jeans for sure. I know this is a short post but I have a doctor appointment this morning. So I need to get ready. I hope you all have the most wonderful Friday. I plan on it…”accessory free”.

Quote of the day:

“God will never lead you where His strength cannot keep you.”
~ Barbara Johnson

Verse:

The name of the Lord is a strong tower: the righteous runneth into it, and is safe.
Proverbs 18:10

***New picture. Check it out.

Thursday, March 9, 2006 4:33 AM CST

As you can tell by the time of this post, I am ready for this day to get started. Yes, today will hopefully be the day I leave my “accessory” at Vanderbilt. My procedure is at 8:00, bright and early. Before lunchtime, if all goes right…”accessory free”. Yes, I am excited.

I will post again later this afternoon (after I wake up good from the anesthesia) to let you know how things went. Now I am going to try to get a little more sleep.

Thank you for your loving care. Your notes on my guest book and emails really lifted my spirits. Thank you for sharing.

Quote of the day:

“My physical scars remind me how strong and determined I am.”
~ Unknown

Verse:

He giveth power to the faint; and to them that have no might he increaseth strength.
Isaiah 40:29

Tuesday, March 7, 2006 3:33 PM CST

In the past three years I have had 6 major surgeries (some pretty scary), over a hundred out patient procedures, and countless CT scans, chemo treatments, shots, and so on. Going through all of that and keeping your head above water with a smile on your face can be quite the task. I am able to do that by the grace of God and all of your wonderful prayers.

I feel obligated to be as open and honest with you as I can possibly be. Please know that this is just not my normal character. No, not the honesty part, the open, bare my heart part. But I know in order for you to pray for me I have to do this. I’ve prayed about it and these are the words He put on my heart to share.

I am struggling; emotionally, physically, financially, and so on. My heart aches so deeply it takes my breathe away. I still have my faith though. I know God has a plan for all of this and He is working it out right now. That is why these are the words He gave me. This is so hard for me to do so please be patient with my rambling.

Emotionally - You can’t have everything you knew your life to be; church, family, work, friends, and freedom ripped from you and not be affected. I have grown spiritually in ways that I am so amazed. But I so look forward to the day when I can be an involved part of all those things once again.

I think when a person has a chronic illness friends and family have a hard time separating the two. I am Stephanie. I just have FAP. It doesn’t define who I am. I’m more than that. Also, friends start to move on with their lives and you are still “the one that is too sick” to do this or that. Believe me, I’m not too sick. I want and need the fellowship and just to be a part of life. I can hardly see to type this because of the heart wrenching tears that rock my soul.

Physically - It’s very hard for a person (me) to have had an “accessory” hanging from my hip since Thanksgiving day. I’ve had everything from blood to bile to now pure abscess fluid come from it. Not too good for a person emotionally or physically. Nobody wants to constantly be worried that someone might smell you. Only if it’s a good smell.

Financially - There’s no way to have had the amount of surgeries and so on and not be suffering financially. Every month just to keep up with my health insurance, doctor bills, hospital bills, and medicines it takes over a $1,000.00. That’s quite a chunk right off the top. So, yes, it worries me financially. But God has always provided. I know He will continue to do so.

This is such a hard post to share. It’s very draining, but I’m sure it will be good medicine for my heart and soul. Please know that I will rise again. You can’t keep a good woman down.

I love you all for your faithfulness in prayer. Thank you so much. Prayers are being answered. I am a living testimony to answered prayer

I am going to end today’s post with lyrics from Only Grace by Matthew West.

There’s only grace/ There’s only love/ There’s only mercy/ And believe me it’s enough/ Your sins are gone/ Without a trace/ There’s nothing left now/ There’s only grace

Your starting over now/ Under the sun/ You’re stepping forward now/ A new life has begun/ Your new life has begun

There’s only grace, love, and mercy. Thank you Lord.

Quote of the day:

“God’s designs regarding you, and His methods of bringing about these designs, are infinitely wise.”
~ Madame Guyon

Verse:

And we know that all things work together for good to them that love God, to them who are the called according to his purpose.
Romans 8:28

Monday, March 6, 2006 10:57 AM CST

Good morning!

It’s been a crazy weekend. Starting off with our ice maker line breaking to our refrigerator. Our house was flooded, at least half of it. We will have to have new wood floors and carpeting. Plus the entire ceiling replaced downstairs (it collapsed). So, you see, I have been a little busy with house stuff.

I am one day closer to hopefully getting my “accessory” removed. Thursday can’t get here quick enough for me. I’m so tired of smelling this abscess, yucky junk. Yes, I am whining a little bit. We’ve tried everything we can think of. The best of all has been the Glad Press n Seal. So now I have my bag all Press n Sealed up. I wish tomorrow was Thursday.

I have my procedure on Thursday and a doctor appointment on Friday. That’s about it, besides trying to get my house back in order.

Please, brighten my day with a note on my guest book. You can be my sunshine for the day.

Quote of the day:

“We can do no great things; only small things with great love.”
~ Mother Teresa

Verse:

Blessed are the meek: for they shall inherit the earth.
Matthew 5:5

Friday, March 3, 2006 9:51 AM CST

Good Friday morning to you all!

I’m on the countdown to hopefully having this drain removed and the fibrin glue procedure done. I won’t know how to act without an “accessory” hanging from my side…just kidding. I can hardly wait to be “accessory free“. It will make dressing so much easier and more fun also. Because I won’t be stuck to having to wear loose elastic pants. Next Thursday will hopefully be the day.

Now to just keep sane between now and then. The output, nasty abscess output, is wearing me out. Here’s a little something to make you giggle. One of my nurses told me to wrap a dryer sheet around my little “accessory” to help with the smell. So I’ve got dryer sheets wrapped nine ways from Sunday all around this thing. It does make a difference, thankfully.

Now just to coast through until next Thursday. This week has been so nice, not a single time at Vanderbilt. What a beautiful, sunshine week. What a blessing!

I feel pretty good this morning. I’m just happy for the day. Reflecting on how far I have come on this journey. The path has settled down just a bit. Thank You, Lord!

I hope you will leave me a note on my guest book. Your notes (& emails too) truly brighten my day and put a smile on my face. Thank you for taking the time.

Quote of the day:

“Take my heart and make it Your dwelling place so that everyone I touch will be touched also by You!”
~ Alice Joyce Davidson

Verse:

But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith.
Galatians 5:22

Wednesday, March 1, 2006 4:23 PM CST

Be still and know that I am God
Be still and know that I am God
Be still and know that I am God

I have been singing this chorus to myself for the past couple of days. The words are so simple, yet breathtakingly powerful. I am so happy that He gives me those times to “Be Still”.

You ask how I am feeling today…….

I have Spring fever! I have enjoyed the beautiful weather and warm sunshine today. I am dealing with this drain much better. Other than the bag sweating to my leg, yuck. Also the nasty abscess junk coming out of it. But better out than in. Now I just have to deal with it until a week from tomorrow. I really believe that the doctor will be able to fibrin glue the fistula and pull the drain. Praise the Lord!

Thank you to all of you that prayed for safety of travel for Bennie. He got home last night. His Granny is doing better than he had anticipated. But is failing a bit. After all, she is 91 years old.

That’s really all I have to post today.

Quote of the day:

“All you really need is the One who promised never to leave or forsake you - the One who said, “Lo I am with you always.”
~ Joni Eareckson Tada

Verse:

Thou shalt increase my greatness, and comfort me on every side.
Psalm 71:21

Be still and know that I am God

Monday, February 27, 2006 10:33 AM CST

Good Morning!

I HAVE to start this post out with a huge HAPPY BIRTHDAY TO QUEEN!!!! I hope it’s the best ever day for you. I love you to pieces and don’t know what I would do without you.

I don’t have a single doctor appointment or procedure for this week! This has got to be a good week. I’m a little sad this morning because Bennie had to leave yesterday for Savannah, GA to check on his grandmother. She is 91 years old. She fell last week and cracked 3 ribs and is very disoriented. So he will have to see what is the best way to take care of things for her. Please say a prayer for him and her that things will go smoothly and for his safety of travel back to me and Zach.

I am feeling much better after the procedure on Friday. The horrendous pain is gone. Thank You, Jesus!! I’m looking forward to a good week. I hope yours is also.

A note on my guest book from you would be such a wonderful gift to me. It would bring sunshine to this cloudy day.

Quote of the day:

“Don't be afraid for tomorrow. God is already there.”

— Ethel Löfgren

Verse:

Endure hardship with us like a good soldier of Christ Jesus.
2 Timothy 2:3

Saturday, February 25, 2006 9:19 AM CST

Well, I ended up spending 4 out of 5 days at Vanderbilt this week. Yes, I was back there yesterday. I spoke with my doctor and told her about the pain and she told me to come in to have it repositioned. The only bad thing was that I had eaten so they wouldn’t be able to put me to sleep this time for the procedure. Yes, yes, I was nervous. But I knew that I didn’t want to go through the weekend in that much pain.

I’ve been in the ROCU so many times that all the nurses in there know me. It’s funny how quickly they brought me back and we just laughed and cut up. The whole time I was a nervous wreck inside. Because back at Thanksgiving when they put the drain in they didn’t get me to sleep good. I remember everything about it. I remember crying and saying over and over again to them while they were pushing that drain into me, “It hurts. It hurts.” Then there is also the time the resident pulled my drain out without releasing the coil. I almost threw up on him it was so painful.

So yes, I was nervous, but determined. Once they got me back and all hooked up you should have heard my heartbeat on the monitor. Pretty obvious I was nervous. They gave me a little Demerol to calm me a little. The procedure was painful but one of my nurses stayed right up at my face and talked me through the pain. The doctor placed the new drain into the abscess. Not up into the small bowel again. When they did the CT they could tell that the abscess was actually collecting fluid again. So I believe it is good for many different reasons that I had the drain repositioned. I’ve learned that if something hurts or doesn’t feel quite right with you, you have to be your own advocate and push for something to be done.

I am feeling much better this morning. The thorn is not so deep in my side. I can live with it. I am looking forward to a good weekend. I hope yours is also.

Quote of the day:

“God can change our circumstances, but sometimes He waits for us to show real desire for change as well as our faith in Him.”

— Anne Graham Lotz

Verse:

We live by faith, not by sight.
2 Corinthians 5:7

Friday, February 24, 2006 8:14 AM CST

I Lift My Eyes

‘I lift my eyes up to the hills -
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth’

I heard this song this morning and felt moved to start my post with it. It brings tears to my eyes because it is so awesomely true. I could not walk a single step in this journey without my Lord. I am thankful for every single day and pray that everyone knows it is His glory that should be praised.

I am having a hard time right now with the pain of the “accessory”. I just want to cry. So “I lift my eyes up to the hills…” that is where my help comes from.

Tuesday afternoon was a fairly good day for me. My pain level was back down to a 3. I was so excited. I thought that changing the drain out was the answer. But the doctor had warned me that the pain I was feeling could be due to the fact that the coil is inside my small bowel. She was right. The last few days my pain level has been about an 8. The more movement and activity I have, the more it hurts. If I rest I can get it back down to a tolerable 3. It’s just tough to do that and take care of all the things I want and need to take care of.

I emailed 2 of my doctors yesterday evening and told them my concerns about this drain. The first major concern is that they have put this into my small bowel. Well, hello, that’s all I have left of my intestinal tract. I don’t really feel comfortable with them messing with it. Because you can’t live without a small bowel. Second of all, if it’s in the small bowel then it will have a constant output. It makes more sense to me if you place it there to do TPN npo along with it. Plus, I also told them about the pain and that I had about had all I could take with the “accessory”. So now I am waiting on an answer. Hopefully it won’t be a long wait.

The only thing I know to do now is pray.

A note from you on my guest book or an email would sure put a little sunshine in my day. Please.

**Check out the new pictures. I just changed them again.

Quote of the day:

“Peace is not something you wish for; it's something you make, something you do, something you are, something you give away.”
Robert Fulghum

Verse:

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:7

Wednesday, February 22, 2006 8:02 AM CST

I have great news this morning. Zach’s team won last night, state champions! We were all so excited. It was the best way to end a day. I was so glad I got to be there. It was iffy while I was at Vandy.

Yesterday we had to wait for a little over an hour before they took me back. I thought it was strange, they took me to a room and set up like I was only having dye injected. So I asked them. That is what they thought was being done. They went to check and found out that I was right. I was suppose to be worked up in the ROCU and then have my procedure with conscious sedation. After I got my iv in (didn’t say a word about having the port - bad experiences being stuck there) they had a tough time trying to figure out what antibiotic they could give me because I am allergic to Penicillin and Levaquin. They finally decided on one and told me there was a very small chance of a reaction in patients with a penicillin allergy. Things were going just fine. My neck itched a little. But I didn’t think anything about it because there was only a very small chance of a reaction. Thankfully Bennie was there with me. He saved my life. I had a bad reaction. I first broke out in a rash which Bennie caught. Then as they were administering the Benadryl my throat felt like it was closing and my chest felt tight and heavy. It was just a little scary.

After that scare I laid in the ROCU waiting my turn forever. I think I told everyone that came near me that I had to be done and in Murfreesboro by 5:00 for my son’s state championship game. They really had me worried because it was almost 2:00 before they took me back. Now this is how determined I was to wake back up as fast as possible. Like I said, it was right at 2:00 when they took me back. The procedure usually takes about 45 minutes. I was up, dressed, and had talked my nurse and doctor into discharging me by 3:00. Now I will say that I was still pretty sleepy and slept some of the way to Murfreesboro. But I made it to the game! Determination and a little hard headed, but more than that, so many prayers.

The procedure went smoothly. The drain is working overtime now. It’s really keeping me busy. My pain level has gone back down to a 3, much better. I can live with that.

Well, I have to stop here for now. No, 2 days in a row were not enough Vandy for me. I have an appointment with my oncologist this morning. I’ll let you know how it goes.

Quote of the day:

“To love is to be vulnerable.”
~ C. S. Lewis

Verse:

Dear friends, since God so loved us, we also ought to love one another.
1 John 4:11

Tuesday, February 21, 2006 8:05 AM CST

Yesterday was a long day for us. Once we got to Vandy the doctor decided to do a CT scan to check on things. Mainly to see if the fluid was recollecting, which it was. But we also found out that the coil to the drain (this part is in my small bowel, ouch!) has come partly undone. So it feels like a wire digging at my insides. Hurts like the dickens, especially when I move.

I was going to have the drain fixed and repositioned yesterday but it would have interfered with Zach’s game. So I am scheduled for this procedure this morning at 10:00. That should give me plenty of time to have it done, wake up, and be in recovery before Zach’s STATE CHAMPIONSHIP GAME at 5:00!

Yes, they won last night. So it’s once again to Murfreesboro for the championship. We are so excited. I pray that the boys will have a great game tonight. I am looking forward to it.

I am also looking forward to having this procedure done today so I can feel better. I’m so tired of hurting so bad (9). This afternoon will be better.

Sorry this is such a short post. But I have to get ready so I can leave. I hope you all have the most terrific Tuesday.

A note on my guest book or an email from you would sure tickle me to pieces when I get back home.

Quote of the day:

“The length of your education is less important than its breadth, and the length of your life is less important than its depth.”
~ Marilyn vos Savant

Verse:

With long life will I satisfy him and show him my salvation.
Psalm 91:16

Monday, February 20, 2006 8:13 AM CST

Life is definitely a challenge living with a chronic illness. One of the things I am most thankful for is that my outside looks fine. It’s the inside of me that is all messed up. But because of that I can walk around and people that don’t know me would never guess I have a chronic illness. The ones that do love to tell me how “good” I look. I am happy for that. But it is also a double edged sword. Because my insides most of the time feel like the enemy, while my outside looks just peachy. It’s all just part of it.

That was part of my post for Saturday that I just didn’t finish. Now it is Sunday, my favorite day, and I am feeling so bad. My temp has started to rise, so we are watching it. I have had no output from my drain, which has never happened before. We are afraid that it has become clogged or something, that would explain the increasing pain and rising temp. My temp is 99.6 now. Hopefully it will go away or at least I will be able to make it through the night before it reaches 101. Once it hits that point it’s all over with. I just don’t want to spend another night in the ED. Please say a prayer. Thank you so much.

I can’t get online. My computer is acting all wacky. So I guess I will finish this in the morning (Monday). Hopefully I will be able to get online then to post it.

Well, it’s Monday morning. My temp has gone down (Thank You, Lord), but my drain is still empty and my abdomen is so tender. My doctor emailed me back and told me to flush it because he is afraid that it’s clogged. I have flushed it twice; once at 1:45 am and then again at 7:30 am. I’m sure it is clogged. But hopefully I can just go in and have the drain repositioned and be done, ready for Zach’s game tonight. Yes, the Saturday game was postponed due to the weather. So they will play it tonight at 7:45 in Murfreesboro. I am about to call the doctor that my doctor told me to call, because he is out of town. I’ll see what she has to say. I just want every thing to work right and for me to feel better.

Quote of the day:

“God answers all knee mails.”
~ Author Unknown

Verse:

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Mark 11:24

Friday, February 17, 2006 11:58 AM CST

Well, I am home again and pretty sore from yesterday’s procedure (7). It was a long day. After I got checked in one of the nurses came to tell us that they were running behind…like a couple of hours behind. So that just added more time until I could eat or drink. I actually wasn’t hungry, just thirsty. So Bennie and I walked around the hospital, checked out the gift shop, and went to see my nurses in chemo. Then we came back and waited and waited. My procedure was scheduled for 1:00. We had to be there by noon. They finally got me back to a room at 3:30. We thought, after talking to the doctor, that he would fibrin glue this time. But once he injected the dye he decided it would be better to advance the drain deeper, in hopes of making the fistula smaller.

I am very thankful this morning for the new “flexible” drain tube. Where the drain goes in doesn’t even bother me. It’s deep inside where he pushed the drain deeper that hurts. But that should ease up in a day or two. I go back to see him for another procedure in 3 weeks. He is planning on doing the fibrin glue at that time. We discussed what we would do if this didn’t work out (fibrin glue). We all agreed that should the fibrin glue not take care of the fistula then we would fibrin glue once more and follow with TPN npo. Hopefully and prayerfully this will work.

Basketball update:
Zach has his next game tomorrow (Saturday) at 4:45 in Murfreesboro at Blackmon Middle School. I hope the game doesn’t get cancelled due to the snow that we are suppose to get. I’m looking forward to the game. This is probably one of the only times in my life where I have hoped it wouldn’t snow much. My philosophy usually is, if it’s got to be cold, then it might as well snow.

Here’s some more information about desmoids and FAP….

Desmoid tumors are uncommon. The estimated incidence in the general population is 2-4 per million people per year.
The estimated risk of developing a desmoid tumor in patients with FAP is between 4 and 20 percent.
The combination of familial polyposis and desmoid tumors, along with other non-intestinal manifestations, has been referred to as Gardner’s Syndrome.
Although they do not metastasize, desmoid tumors are locally aggressive, infiltrating and sometimes causing destruction of adjacent vital structures and organs. The disease process may be devastating and occasionally fatal.

As I posted the other day, I have every manifestation of FAP. Usually a person will have 1 or 2, but not everyone. Plus, you’ve heard of baby making machines? Well, I am a desmoid/ fistula making machine…ha ha

I want to share this with you. The parents of a beautiful little boy posted this on their Caring Bridge site. How wonderful and powerful it is.
There is a book by Anne Graham Lotz titled “Why?”. A wonderful book. The short version of this book is “There is sometimes a greater purpose to suffering than being relieved from it. For the child of God, suffering is not wasted. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. If God were small enough for us to understand, He would not be big enough to save us.”

Yes, to my Fairview girlfriends it is a beautiful day. Can you see me smiling?

Diva, I love you!

Quote of the day:

“Don’t trust to hold God’s hand; let Him hold yours. Let Him do the holding, and you do the trusting.”
~ Hammer William Webb-Peploe

Verse:

Trust in the Lord forever, for the Lord, the Lord, is the Rock eternal.
Isaiah 26:4

(My favorite verse. It is a comfort to me.)

If you haven’t checked out the new pictures, check them out. I will be changing them again soon.

Thursday, February 16, 2006 8:01 AM CST

THEY WON! THEY WON!

Yes, Zach’s team won 44 - 20 yesterday. So now they play on Saturday at 4:45 at Blackmon Middle School in Murfreesboro. If they win this game they will play again on Monday for the championship (state).

I am trying to get a few things done this morning and of course one of them is my post. I can’t have anything to eat or drink until probably this evening. I have to be there at noon. The procedure will be at 1:00. I am looking forward to getting rid of this stiff drain tube, thorn in my side. I don’t believe that my drainage is low enough yet to pull the drain completely. But it will be a step in the right direction getting the tube changed out. My guess is that they will put the drain in deeper like the doctor talked about. He wants to get it closer to the fistula. I’ll let you know…probably tomorrow. Because I will probably be pretty tired this evening. You know, getting over being put to sleep once again. There is no telling how many times I have been put to sleep. If we knew it would definitely be a shocking number. That’s probably the reason I can only concentrate to read short periods of time now…effects on the brain from anesthesia.

Would you please say a prayer around 1:00 for me, Bennie and Zach (because waiting is tough), my doctor, his nurses, and the anesthesiologist.

I'm ready.

Quote of the day:

“I have learned that what we have done for ourselves alone dies with us. What we have done for others and the world remains and is immortal.”
~ Author Unknown

Verse:

This is the message you heard from the beginning: We should love one another.
1 John 3:11

Wednesday, February 15, 2006 9:04 AM CST

All I’ve got to say is…

Answered prayer once again. God is so good!

Yes, our prayers were answered. They were able to change my procedure to tomorrow at 1:00. So I won’t miss Zach’s game today. I am so glad and so excited. God is just smiling down. Plus, it looks like another beautiful day. What more could I ask for…I’m pretty happy.

I figured I better get on here quick this morning because we have to meet at the school at 10:45 to leave at 11:00 for Murfreesboro. We will stop on the way for some lunch. Bennie and I did this last year. It was fun watching the boys and how they acted on the way to the game. Now this year my baby is one of the captains of the team.

If they win this game today, they will play again on Saturday. A few of you (like Diva and my Infra Gang buddy) have asked what time. I should find out today. I will let you know. I hope they have an awesome game today.

My prayer for you is that you have the most wonderful Wednesday ever!

Quote of the day:

“Love doesn’t make the world go round. Love is what makes the ride worthwhile.”
~ Franklin P. Jones

Verse:

And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him.
1 John 4:16

Tuesday, February 14, 2006 9:08 AM CST

HAPPY VALENTINE’S DAY!!!!!!!

I hope you all have the sweetest day.

On Valentine’s Day I am so thankful for God’s loving care over me, the love of my family and friends, and the sunshine outside my window.

Yesterday I saw my surgeon. It was just a follow up appointment from being in the hospital. I always have to see him 2 weeks after I am discharged. We talked about the drain and a CT scan. He said that we would hold up on that because I would be getting a CT with the dye injection when I have my drain checked.

When he came in he brought one of his residents with him. This is a pretty common occurrence when I see doctors. There aren’t a lot of people like me that have every single manifestation of FAP. Usually a person will have one or two, but not all of the effects of FAP. I guess I’m just the lucky one…or maybe not.

After I left my surgeon’s office I called and spoke to one of the nurses in Radiology Recovery (where I go to have my drain checked). I asked her to let my doctor know that my drain output had dropped from 20 cc a day down to 8 to 10 cc. Once she had a chance to talk to him she called me back to let me know he wanted to see me for another outpatient procedure at 9:00 Wednesday morning. Well, I was so excited for a number of reasons. First of all, it meant that I would either be getting the drain out or if not that then at least getting a flexible drain (more tolerable). Second of all, it wouldn’t interfere with Zach’s basketball games (state play offs). But guess what? That was short lived. When Zach came home from practice he told us the games had been moved over a day. Which meant his Tuesday game would now be a Wednesday game. So now I have to call to see if I can reschedule this procedure because I will not miss his game. It might mean that I have to end up waiting until my original appointment the 27th. I am praying that I can have it done this week.

I am praying this morning for God to take away my fear of having the drain removed. It almost scares me to get it removed because all the other times since Thanksgiving I have ended up back in the ED within 48 hours…abscess back and deathly sick. So please join with me in praying this fear away. I don’t have the time or energy to waste on that. This one is going to go smoothly.

Well, that’s all for now, end of post. Go out and have a beautiful day. A beautiful Valentine’s Day.

Quote of the day:

“God loves you and wants you to experience peace and life - abundant and eternal.”
~ Billy Graham

Verse:

I am come that they might have life, and that they might have it more abundantly.
John 10:10

Sunday, February 12, 2006 3:49 PM CST

Today is my favorite day and I am a little bit down. I think the discomfort from the drain is just wearing on me. Today I just want to have a good little cry, get it behind me, and move on. Sometimes that’s all it takes.
My day is a bit brighter after worshipping with my CRBC family. Tonight we have a concert for the service. I am looking forward to that. It may be just what the doctor ordered to pep me back up.

Commercial break here…….

I have to catch you up on Zach. They played the first regional game and won. So the day of the championship game my baby got his head buzzed. I almost cried watching his hair fall to the floor. But Bennie and I think it shows great team spirit. Zach and 3 of the other players plus the team manager got their heads buzzed. Some other boys in the eighth grade have gotten their heads buzzed to show their support.
Friday afternoon they played the regional championship game and won! Zach received another All Tournament award for regionals. Now they move on to state. Their first game is Tuesday (Valentine’s Day) at 2:15. If they win that game they play again on Saturday I believe.

It was so bittersweet to see the eighth grade players after the game Friday night. Bittersweet because it was the last time they would play in that gym. The last game. Some of them had their pictures taken laying on the H in the center of the court.

Okay, okay, I have perked up a little….Diva just called. She can always make me laugh and feel better just talking to her. You know it’s that “Mama love”. We all need it.
I love you bunched and bunches Mother!

New week is beginning. I have an appointment with my surgeon tomorrow. Maybe he will order a CT to see how my abscess is looking. Not sure though if he will since I just had the dye injection. But I do know that I am counting the days until I go back in to have the drain advanced up to the fistula. 15 days and counting. When the doctor does this procedure he can change out this stiff drain tube and use a flexible one. That will make life so much easier. So 15 days to go.

I want to take a moment to thank all of you that have been so wonderful about emailing me or leaving me notes on my guest book. You just don’t know how much that means to me and brightens my day. Just a moment of your time is such a gift to me. Thank you from the bottom of my heart. No tears now, just a smile.

New pictures...check them out and tell me what you think.

Quote of the day:

“God is the sunshine that warms us, the rain that melts the frost and waters the young plants. The presence of God is a climate of strong and bracing love, always there.”
~ Joan Arnold

Verse:

Blessed is the man who makes the Lord his trust.
Psalm 40:4

Thursday, February 9, 2006 8:06 AM CST

Good morning.

I found out a few things yesterday. Yesterday morning I talked to one of my doctor’s nurses. She said that he wanted me to come in to have my drain checked. This was because of my drain pain, abdominal pain, and output changing back to bloody from almost clear.

The things I found out; the doctor that put this drain in didn’t use a flexible tube. This tube is very rigid. So that explains some of the pain and discomfort. I told the doctor about flushing with 10 cc of saline in the morning and at night (told to do so by discharge nurse). He quickly said that was too much, to change it to 5 cc a day. But once he injected the dye and looked at the abscess and fistula (yes, another fistula) he changed his mind and said not to flush until he sees me in 3 weeks. He is hoping by then that the abscess will have collapsed around the drain. Then he will use a guide wire and advance the drain deeper, hopefully up to the fistula. Then after that hopefully fibrin glue this one. I’m not sure, but this time he might put me on TPN while this is healing. So please pray God’s peace over me.
Being on TPN with nothing by mouth can truly try the soul. Because so much of our social interaction is done around food; going to lunch, having a cup of coffee, and so on. Even done to a piece of gum…not allowed while on TPN NPO. The last time I had to do this what I missed most was tasting things. If my doctor says that this is what he believes I should do this time, I am a big girl, I can do it. Because it’s all about getting rid of this fistula and getting to feeling better. Pain level right now with drain pain is about a 8, hurts to move around.

Okay so enough whining from me. I had another visit from my Infra Gang buddies. This time three of them came. I enjoy their visits so much. I look forward to it the whole day. We laughed and laughed. Plus they brought 2 more boxes of food. They are determined to help me get some weight on. When you’re not feeling so good you know it’s just nice to not have to worry about fixing dinner. Thank you guys and girls for your special ministry to me. You are so dear to my heart. I love you. God bless you.

Tonight Zach has his first regional basketball game. If they win this game they will play again on Saturday for the regional championship. After that, next week they go to Murfreesboro for state. This is so much fun.
Plus, tonight Bennie’s oldest son and his wife are flying in from Chicago to stay with us for a few days. So it will be a busy next few days. I will have to rest when I get the chance.

Well, that is all for this post. So go have a blessed day.

Quotes of the day:

“Friendship isn’t a big thing - it’s a million little things.
~ Author Unknown

“Friends are relatives you make for yourself.”
~ Eustache Deschamps

Verse:

“Man is never so tall as when he kneels before God - never so great as when he humbles himself before God. And the man who kneels to God can stand up to anything.”
Isaiah 9:6-7

Please take just a moment, leave a quick note on my guest book, and truly brighten my day.

Tuesday, February 7, 2006 8:30 AM CST

Good morning! I am happy for the day. Glad to be here, at home.

Yesterday I had an appointment with my Infectious Disease doctor. I had to catch her up on what had happened since she last saw me. She agreed about stopping the antibiotic and only starting another if I spike a temp or show any other signs of infection. She also said that even though I do fine with the lower dose of Levaquin now that I have shown an allergic reaction to the higher dose she wouldn’t put me on the lower dose again without hospitalizing me to monitor how I do.

I am still having “accessory” pain and it has radiated to my abdomen now. Plus my output has turned bloody and clotty again. I have emailed the doctor to let him know. So now we wait and see. I’m not sure what is going on. Maybe the drain needs to be repositioned or something. Hopefully he will answer my email soon.

Please pray for Bennie. He has strained a nerve sack. He did this lifting something too heavy at work. He says that it is very painful. So it makes it hard to move around. Please pray for a quick recovery for him.

I am working on getting some new pictures. When I have them on I will let you know.

Quote of the day:

“God’s gift to us is who we are and our gift to God is who we become.”
~ Unknown

Verse:

The Lord will fulfill his purpose for me; your love, O Lord, endures forever - do not abandon the works of your hands.
Psalm 138:8

Monday, February 6, 2006 10:49 AM CST

What a beautiful, sunshine day it is on this Monday morning. I hope you all had a great Super Bowl weekend. I am feeling a little better today. This weekend was kind of slow for me. I’m still having drain pain. But hopefully that will ease soon.

I finally heard from my doctor and then a nurse about the allergic reaction. My doctor took me off of the antibiotic. If I spike a temp he will have to figure out something else to give me. So far so good, no temp. But the rash is still hanging around and driving me nutty (itching).

Today I have an appointment with my ID (infectious disease) doctor. I know, it sounds bad saying that, kind of scary almost. But it’s not. I have to see her because of my abscesses. Their department is the one that handled my IV antibiotics. So this is a follow up. I’ll have to catch her up though. The last time she saw me was the morning before I had the fibrin glue procedure and my drain removed. Now I have a new “accessory”. You know this new “accessory” is still most definitely not one of my choice. I can think of far better ones than that. But on the positive side, it has made my abdomen feel better. So that is a plus.

Zach update…..
His team won the championship for the county. Him and two other players were chosen as All Tournament. Now this week they play for the Regionals. Then the following week, off to Murfreesboro for State. These boys have really had a great season. It is so much fun to watch them play.

I’m a little sad because Bennie and I were under the weather on Sunday (my favorite day). So we didn’t make it to worship with our friends at CRBC. I really miss being there.

Well, I need to stop here for now to get ready to go to the doctor. I hope you all have the most marvelous Monday ever. Remember this is the only February 6, 2006 you are ever going to have. So lets make the most out of it. I love you all and am so blessed by your love, prayers, and friendship.

Quote of the day:

“Peace is to be found in the acceptance of things we are unable to change.
~ Unknown

Verse:

“I know the Lord is always with me; I will not be shaken, for He is right beside me.”
Psalm 16:8

Thank you so much for sharing this journey with me. Thank you for allowing me to share it with you. Walking this path is so much easier with friends like you. I can’t thank you enough. Just know I do thank you with all my heart and love.

Friday, February 3, 2006 9:36 AM CST

I’m waiting and waiting and waiting…for a call from my surgeon. Yesterday I spoke to one of his nurses to let her know that I am having an allergic reaction to the antibiotic they put me on. I have taken this before but not at this high a dose. Anyway the nurse said that she was going to have him call me back. So I waited. Last night I went ahead and took another dose and added a Benadryl with it.

The good thing about last night was that I (we) had a little distraction to keep my mind off of the call I didn’t receive. Zach had another tournament game. They won. They will play for the championship on Saturday. Then next week they go for state playoffs. So we are pretty excited about that. We just love to watch these boys play. They are such a great team with some remarkable talent.

Oh I have to share this with you. On Wednesday I surprised my Infra Gang buddies with a visit. They had no idea I was planning on meeting my parents there to surprise them. The looks on their faces when each of them came in and saw me was priceless. It made my whole day, maybe even week. These friends have been so good to me. I love you guys and girls to pieces. Thank you so much for everything you do.

Nothing much else to post for now, other than just waiting.

Quote of the day:

“A friend is one of the nicest things you can have, and one of the best things you can be.”
Douglas Pagels.

Verse:

All the ways of the Lord are loving and faithful for those who keep the demands of the covenant.
Psalm 25:10

Please take just a moment and brighten my day with a note from you.

Tuesday, January 31, 2006 9:16 PM CST

This is what it’s like to surrender to You
When every thing is laid down at Your feet
When it’s not about me
But it’s all about You

So here is my story

Lyrics from I Am Ready by Broken Frame

I believe I have used part of this song before. But this is what is on my heart to share today. I so identify with “When it’s not about me, but it’s all about You”. That is my purpose for this journal, to let His love and light shine through. Because without Him I could not walk this journey.

Where do I start? Well, I guess I will start by telling you I fought hard to not go to the hospital (ED). I was trying to make it until Monday so I could see my doctor and have a CT. I knew that was what I needed. In my mind I already knew what was happening. The abscess was back. Gosh, I had such a wonderful week last week. I just wasn’t ready to give it up. But that was not in my control. Sunday late afternoon my temp reached 101. So I packed a bag and Bennie and I headed to Vandy. When you’ve done this as many times as we have, you just know.

They did a CT scan on me fairly quick. The bad thing was that they waited so long to access my port that the Emla cream (numbing) had worn off. Then they had to access it twice. It hurt pretty bad unfortunately. It wasn’t long after the scan the doctor came to give us the news. The abscess was there once again (6 x 6). I stayed in the ED until Monday evening. I had gotten there at 6:00 pm on Sunday and finally got a room on the ninth floor at 6:00 pm Monday.

I almost forgot to tell you one thing. When I came back from having the drain put back in once again (still didn’t get a punch card or frequent flyer anything) I had a hard, almost impossible time waking up from the anesthesia. Bennie would be talking to me and I would fall right to sleep while he was talking. The other thing was that I was breathing so shallow and sometimes not at all, that the alarm on the machine keep going off. Bennie was constantly shaking me and calling my name to get me to take deep breaths. He said that I would go for a good minute and a half without breathing at all. It took quite a while for the anesthesia to wear off. This was the first time I’ve ever had that happen.

The good news, yes there was some good news, I don’t have to do the iv antibiotics this time and also I got to come home today.

I will post more tomorrow. I am very sore from the procedure (8) so I think I will take some pain medicine and try to get some rest. I didn’t sleep any last night.

Thank you so much for all of your prayers and love.

Quote of the day:

“Sometimes the Lord rides out the storm with us and other times He calms the restless sea around us. Most of all, He calms the storm inside our deepest inner soul.”
~ Lloyd John Ogilvie

Verses:

I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.
Psalm 4:8

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”
Psalm 91:1-2

Saturday, January 28, 2006 9:15 AM CST

This morning I want to share this with you. It will touch your heart it is so sweet. Back at Thanksgiving when I was in the hospital my cabin buddies came to see me. We laughed and laughed, had the best time. It was such a boost to my spirits. But they had another reason for being there also. They had brought a small pumpkin to give to me as our prayer pumpkin. They said that every time I looked at that pumpkin it would remind me that they were praying for me. Then scripture was read and they wrote the verses on the pumpkin, plus they each signed their name (with a Sharpie). It’s fun to look at each of their signatures because they so match each of them.

But now to the best part of the story….the prayer pumpkin is still beside my bed. After all this time it still looks the same as the night they brought it to me. Isn’t that something? Every day I check it. I love my prayer pumpkin. And I love my cabin prayer buddies. Thank you for brightening my stay in the hospital.

This morning I’m not feeling too well. Actually it started last night, just didn’t feel right, kind of nauseous. So I took my temp and it is already 99.5. So I will watch it for right now in hopes and prayer that it will resolve itself. I’m just concerned because my abdomen and back are hurting again. I don’t want to be in the hospital again or have another drain. I will call my surgeon on Monday to get him to schedule a CT scan so we can determine what is going on.

This really makes me a little sad because I have enjoyed feeling so well, the best I have in 3 years. I don’t want to lose that.
Please say a little prayer for me. Thank you so much for taking the time to do that. Our prayers will be answered.

Quote of the day:

“God does not waste an ounce of our pain or a drop of our tears; suffering doesn’t come our way for no reason, and He seems especially efficient at using what we endure to mold our character. If we are malleable, He takes our bumps and bruises and shapes them.”
~ Frank Peretti

Verses:

We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.
2 Corinthians 1:8-11

(These are the verses on the prayer pumpkin. I just thought I would share them with you.)

Thursday, January 26, 2006 4:08 PM CST

Yesterday was a great day. I had a visit from some of my Infrastructure Gang buddies. They brought “Soul” food for us. These people are just the best. Practically every day I get a card in the mail from them. Now they are working on packing some weight on me. Anyway, I had so much fun visiting with the girls. We talked, laughed, and watched American Idol; which made us laugh some more. Girls, your visit made my day. Thank you so much for giving of yourself to me.

Today has been a wonderful day so far. I went up to Bennie’s office to help him and Becky get the 1099s ready. It’s so nice to be able to say that I felt well enough to help out. After that I met my parents for lunch. So it’s been another great day!

I think I already posted that I don’t have any doctor appointments this week. In the past that would kind of make me nervous because it seemed like whenever I had a week like that I would end up in the hospital. But I’m feeling too good to be worried about that. I just need to work on my stamina (energy level).

Well, that’s about all I have for today.

Quote of the day:

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.”
~ Bernice Johnson Reagon

Verse:

The Lord will fulfill his purpose for me; your love, O Lord, endures forever-
Psalm 138:8

Tuesday, January 24, 2006 1:14 PM CST

Last night was a really fun night. Zach had his last season basketball game and they presented the eighth grade players and their parents. It was their Senior Night. Then they went on to play the game and stomped the other team. They are in first place for the county. Now the tournaments start this weekend. Oh, another really cool thing, the high school basketball coach came to see the guys play last night. After the game he spoke to Zach and one of his friends. He told them he would be very disappointed if he didn’t go out for the team next year. Zach was pretty pumped up about that. But I noticed that he still didn’t sound good. He told me that he had gotten really winded during the game. That’s just not like him. Of course, mama took him to the doctor this morning. It’s just an upper respiratory infection. I had to make sure it wasn’t bronchitis or pneumonia. After that we had lunch together. Then he wanted to go to school. He said he didn’t want to get behind. So I’ve just gotten back to the house.

I’m so excited, I don’t have any doctor appointments this week. This is going to be a wonderful week. So far, so good after the fibrin glue procedure. I am having to keep a check on my temperature. If I spike a temp it would be one of the first signs of trouble. But like I said, so far so good. I feel the best that I have felt in 3 years! Now that’s saying something. I am so thankful for the answers to prayer that we have already had and can hardly wait for the rest of the healing. God is so good. He loves me and in His time He will answer. So I wait and pray patiently.

Please brighten my day with a note on my guest book or an email. If you leave a note on my guest book it also lets me know you’ve been by. Hope you all have the most fabulous day!

Quote of the day:

“I don’t know what the future holds; but I do know who holds the future.”
~Unknown

Verse:

Be strong and take heart, all you who hope in the Lord.
Psalm 31:24

Monday, January 23, 2006 11:07 AM CST

What a great morning it is!

More prayers have been answered. Since I had my drain pulled and the fibrin glue done on Friday, I get to stop my IV antibiotics today. My home healthcare nurse has already been here to draw labs and pull my access. Boy, am I glad I didn’t have to get stuck again. Because I just wasn’t in the mood to be stuck multiple times.

So now I am “accessory free”. No more drain. No more port access. Although, of course, the port is still there and I will probably have it for a while. Not sure what the plan is on that yet. Now that I am “accessory free” I am free to shower. That is something I have been so looking forward to. Since the boys are gone I might just stay in the shower till I run all the hot water out. Ha ha

As you can tell, even though it’s a cloudy, rainy day outside, the sun is shining brightly on me. Thank You Father for answered prayers.

Quote of the day:

“Happiness depends on happenings; joy depends on Christ.”
~ Unknown

Verse:

Let us hold unswervingly to the hope we profess, for he who promised is faithful.
Hebrews 10:23

Saturday, January 21, 2006 6:39 PM CST

HALLELUJAH! PRAISE THE LORD!!!!!!!!!

Our prayers were answered yesterday. I saw my first doctor and that went well. She said that I could most likely stop doing the iv antibiotics a few days after the drain is pulled. From there we ran some errands to take up time until my procedure. When I got checked in it was like a homecoming (ha ha) different people that worked there came over to say hi to me and see how I was doing. This man across from me just looked at me like, “Who is she?”. That just means I have spent too much time there.

Anyway, to make a long story a little shorter, I found out one of my favorite doctor friend was going to do my procedure. That made me very happy. He told me he wanted to inject the dye first to see how things looked. Then he would make a decision on whether he would advance the drain, pull the drain, or pull the drain and fibrin glue. When he injected the dye the fistula was very obvious. I thought he was going to just advance the drain. But he said that he had good news and bad news. The bad news was I had a fistula. The good news was that he thought it was small enough for him to go ahead and do the fibrin glue right then! I was so excited. That meant I would be drain free, which also means that maybe like on Monday I can stop doing the iv antibiotics.
It was kind of nerve racking waiting to be able to have this done. They have to order this fibrin glue. Then it has to be mixed. While we were waiting they prepped me. It’s just like a surgery. After that I don’t remember anything because they zonked me out.

I had a tough time waking up in recovery. My eyes felt like they had weights on them. They kept on wanting to close. Plus, I was feeling a little sick. But I was determined not to throw up. Because if I did then I would have to stay longer.

On the way home I kept on falling asleep in the car. But every time I woke up I would tell Bennie I wanted to stop for something to eat. By then it was after 6:00. So I hadn’t had anything to eat or drink since 10:00 the night before. We tried 2 places but they were slam packed. The 3rd one ended up working. Although I barely remember being there.

Today I am so happy and blessed. Oh, yeah, more good, no great news, the tumor that had the abscess has shrunk considerably. So prayers are being answered left and right. Things just keep getting brighter and brighter.

Quote of the day:

“Nothing is too big for my God to accomplish, and nothing is too little for Him to use in accomplishing it.”
~ Unknown

Verse:

Those who know your name will trust in you, for you, Lord, have never forsaken those who seek you.
Psalm 9:10

Thursday, January 19, 2006 3:47 PM CST

Hi there. It’s Thursday afternoon and such a beautiful day. I thought I better post at least a little something today since I am having the outpatient procedure tomorrow. So tomorrow will be busy with a doctor’s appointment first and then at 1:00 my procedure. It wouldn’t hurt my feelings at all if things looked so good that they set up doing the fibrin glue. I am way tired of these “accessories”. They are surely not ones I would choose.

I am trying to pack it in today because I can’t eat or drink anything tomorrow.

I really don’t have anything else for now. I will post again as soon as I am able to tomorrow. It will probably be evening before I do. Please say a prayer for tomorrow.

Quote of the day:

“Be assured if you walk with Him and look to Him, and expect help from Him, He will never fail you.”
~ George Mueller

Verse:

We live by faith, not by sight.
2 Corinthians 5:7

Take one more moment and leave a message or email for me. It an easy painless way to pour a little “sunshine” into someone else’s world.

Wednesday, January 18, 2006 4:34 PM CST

Finally, I can post. My internet has been out since yesterday. Yesterday we actually came home to a dark house. The electricity was out. I guess due to the weather. We figured, no big deal, it’ll be back on in no time. Zach and I both joked that it better come back on before American Idol. But the closer and closer we got to 7:00, the less likely it looked that that would happen.

Now don’t get me wrong, we enjoyed just being together in the quiet. We actually played cards by candlelight.

Now I have to brag on Bennie. He knew how much I wanted to see American Idol, so he and Zach brought one of his work generators up and hooked up the TV. I was so excited…until we realized the cable was out also. We couldn’t get Fox. Oh well, it just wasn’t meant to be. So we ended up watching Fear Factor. Now that is a sick show. No amount of money would entice me to eat bugs, worms, or whatever.

I electricity didn’t come back on until after 10:00. The cable was fixed until this afternoon. Anyway, enough about that.

I went to my urologist yesterday. He went ahead and scheduled to have my stent changed in April. So now I am trying to see if I can have my flex seig done at the same time. Maybe it will work out.

My labs looked good. My hemoglobin was like 12.5 and my hematocrit was 39. That’s the highest those have been in a long time. The blood transfusion was a good thing. Now I am trying to make sure that I eat stuff to build me up. Plus, I am still drinking my strawberry/banana cream slushes from Sonic. I’ve finally started to gain back the weight I lost…Thank You, Jesus. I think eating to gain weight is just as hard as not eating to lose weight. But I am almost back to my weight prior to the hospital stays.

I hope you will take a moment and leave me a note on my guest book. That way I’ll know you’ve stopped by. Plus, more importantly, it just brightens my day. So spread a little sunshine.

Quote of the day:

“Courage is important to God because it is a natural byproduct of trust. The greater we trust, the braver we become. As long as God leads the battle, we can march in confidence, knowing that we’ve already won.”
~ Tim LaHaye from “Embracing Eternity”

Amen

Verse:

“Be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”
Joshua 1:9

Thank You Father!

One last thing……..

Chorus to All I Want To Do by Ginny Owens

All I want to do is give this life to You
All I want to do is give this life to You
All I want to do is give this life to You
And let Your will be done until it’s all I want to do

Fill me with Your spirit Lord. Guide and direct my path. Help me to be a blessing in people’s lives and a reflection of You. Amen

Monday, January 16, 2006 9:36 AM CST

It’s Sunday, my favorite day. Today has been cold, cloudy, and overcast. But that’s okay, it just makes me appreciate the sunny days even more.

I guess I should get you up to date. My home healthcare nurse came again to draw more labs. Even on the lower dose my levels were too high. Once again the levels were high. So the doctor cut my dose in half, which means 1 less iv to do every day. Now I only have to do 4 a day. Yea!!!!!!!!!!

This week lets see. I have to see my urologist on Tuesday. Then Friday I am having an outpatient procedure, the drain advancement.
Tomorrow my home healthcare nurse will be back to draw more labs and change my port access. After last week’s experience I am not looking forward to that one bit. It doesn’t matter how many times they stick you in the chest it still smarts. So if you will say a prayer that things will go smoothly it would mean the world to me.

I’m always posting about the canvas. But it’s always during the day. Did you see Saturday night’s canvas? The moon. It was the brightest, most beautiful, and biggest moon I have seen in quite a while. You could probably read your paper outside last night it was so bright.

It’s Monday now. Never did finish yesterday’s. So I’ll just combine them. This morning Bennie pulled my port access so I could put some Emla cream on to numb the area. My nurse has come and gone. It only took 2 stabs today. The first one I just felt the pressure of it. The second one was a different story. I guess Emla isn’t made for multiple sticks. But anyway, glad, so glad to have that behind me.
Hopefully all my labs will look good. She drew labs for blood count, vanc level, kidney function, liver function, and electrolytes. Should know something by this afternoon.

I am blessed and thankful to have this day. I hope you feel the same way. Because there won’t be another January 16, 2006. This is it. It’s going to be the best day. A note from you would surely bring out the “sunshine”.

Quote of the day:

“Blessings hemmed with praise will not unravel.”
~ Unknown

Verse:

The Lord is my strength and my song; He has become my salvation. He is my God, and I will praise Him, my father’s God, and I will exalt Him.
Exodus 15:2

Thursday, January 12, 2006 3:21 PM CST

Good morning!

This morning my home healthcare nurse has to come back to draw more labs since my vanc level was so high. They are also going to check my kidney function to make sure the antibiotics are causing trouble there. I guess since the level was so high they have to see if my kidneys are about to flush these antibiotics back out.

I got a call yesterday from my surgeon’s clinic to set up an appointment for a “drain repositioning”. That will be done on Friday, January 20th. Of course they are not going to touch that drain without conscious sedation. At first I was a little disappointed that it wasn’t to have the drain removed and the fibrin glue done. But after thinking about it, it makes sense to do this before trying the fibrin glue. This way when the drain is advanced if there is anything else in there to be drained hopefully that will do the trick.

Now it is afternoon. What a gloriously beautiful day it is here in K.S. When I finish this post I believe I will go soak up some of this sunshine on my front porch. It’s too pretty a day not to. Sunshine is good for the body and soul.

I am very blessed to have the sweetest daughter ever. Although I didn’t give birth to this wonderful girl, she is truly my daughter. I love her to pieces. Don’t know what I would do without her. It’s so cool because we have the mother/daughter relationship. But we are also the best of friends. Can talk about anything to each other. She has been and continues to be a tremendous help to us. Just different little things that we need help with, she is right there. Never a question. If you are reading this Becky, I love you to pieces, Baby Girl! Thank you for your sweet giving heart.

Okay enough for right now. My front porch is calling me. Plus, I have to go check out the canvas for today.

Thank you Lord for giving me this day!

Quote of the day:

“It is easy enough to be pleasant, when life flows by like a song. But the man worthwhile is the one who will smile, when everything goes dead wrong. For the test of the heart is trouble, and it always comes with the years, and the smile that is worth the praises of earth is the smile that shines through tears.”
~ Ella Wheeler Wilcox

Verse:

He will yet fill your mouth with laughter and your lips with shouts of joy.
Job 8:21

Wednesday, January 11, 2006 8:57 AM CST

I am now in the “waiting game”, waiting patiently to hear from the doctor about my CT scan. I just know things look better. So I am anxious to get the fibrin glue done as soon as possible. Then I will only have to do my iv antibiotics for 2 more weeks. That will be so great. Oh, and my surgeon told me that we would try the fibrin glue without TPN. So that’s a bonus. He said that my fistula is a low output fistula.

Yesterday was the day my nurse comes to draw labs and change my port access out. Yesterday didn’t go as smoothly as usual. She had to stick me 3 times in the chest. The needle she has to use on me is 1 inch long and about as big around as a pencil lead. Ouch! She keep saying she was sorry. And what could I say? I said that it was alright. But there is definitely nothing alright about being stabbed repeated in the chest with that size needle.

Later in the afternoon I got a call from home healthcare to let me know my vancomycin levels were too high. So they asked me to stop taking that antibiotic for 24 hours. Now today I will start a lower dose.

I got the most wonderful surprise yesterday evening. Two of my Infra Gang buddies came to visit me. They came carrying boxes of food. The Gang had gotten together and made us 2 dinners complete with salad, rolls, and desserts, plus a breakfast casserole. I could not believe they had done that for us, for me. What wonderful, caring friends they are. Zach is looking forward to having the lasagna you brought to us tonight. Oh, we went ahead and tried the apple pie last night and it was absolutely delicious.
The visit with you girls meant the world to me. You really brightened my evening. I so enjoyed our visit. Thank you so much for taking time out in your busy day to visit me. Plus, your cards continue to bless me. God bless you all.

Quote of the day:

“God is always trying to give good things to us, but our hands are too full to receive them.”
~ St. Augustine of Hippo

Verse:

You are my hiding place, you will protect me from trouble and surround me with songs of deliverance.
Psalm 32:7

Monday, January 9, 2006 5:16 PM CST

I decided to post while I am waiting for my ivs to run. It’s 6 am and I am a tired little girl. These 6 am ivs are tough because all I want to do is snuggle down deeper under the covers and sleep a little longer. But at 6 am I do 2 ivs back to back. It takes an hour and a half for these to run. I usually end up in Bennie’s comfy chair and doze just a little.

Today will be a busy day with all of my ivs and 2 doctor appointments. The first one is with my surgeon. I am hoping that we can go ahead and schedule a CT scan to see if the size of the abscess has decreased. I believe it has because the drain is putting out half of what it was. So if that is the case we can set up doing the fibrin glue. I know, I know that just pushes me that much faster into TPN (NPO - no food or drink by mouth). But it also gets me that much closer to being finished and having a more definite finish date for these antibiotics. I have to do them for 2 weeks after the drain is pulled.

I have just made it back home from all my appointments. It’s 4:00, busy day. My surgeon agreed with me about doing the CT scan and then if things look good doing the fibrin glue. I am so excited because I can see an end coming with being tied down to these ivs. Plus, my energy should boost back up also.

After that we went to see my endocrinologist. That was another good one. He said that he was releasing me because I am doing so well. But he told me if I have a major illness or surgery in the next year I will need to take my hydrocortisone for 3 or 4 days. That is just a precaution.

Then we went for my CT scan. Now we just have to wait.

I am so excited about how the day has gone. I’m just thankful and so very blessed. I have to say another thank you to all my nurses and doctors. I believe we are a good team and we are seeing answer to our prayers.

I am going to stop here for now to make all the phone calls. You know, spread it around, share it. If you have a moment please leave me a little hello on my guest book. Your hellos really brighten my day.

Quote of the day:

“Faith is two empty hands held open to receive all of the Lord.”
~ Alan Redpath

Verse:

Trust ye in the Lord forever, for the Lord, the Lord, is the Rock eternal.
Isaiah 26:4

Friday, January 6, 2006 1:46 PM CST

I’m pretty proud of myself today, feel like I have really accomplished something. It’s been a week since I was discharged from the hospital. I have a week under my belt with these ivs. I have noticed a slump in my energy level. But I just keep my focus on breathing in and breathing out. Today Bennie wanted me to go to the bank for him, I had to go to the grocery store, and Zach needed me to return something for him. This morning I was so tired I wasn’t even sure I could get one of those things done. Much less all three. Here’s the proud part…I got all three done and back in time to post before my next iv.

On the way home from the grocery store I was looking at the “canvas” noticing that the clouds looked so heavy (snow clouds). I looked over to my left and saw just one ray of sunshine beaming through those heavy clouds. My “Doorway to Heaven”. I thanked God for giving me today, helping me to accomplish those things, and the doorway.

If you live in KS check out the Advocate, front page. The rainbow from last week made the paper. It was the brightest rainbow I believe I have ever seen. We were over at my sister-in-love’s house when we noticed it. We saw a double rainbow. You know how I feel about rainbows. I just sat there and watched it until it disappeared. Rainbows are hope and a promise. He promises to heal me in His time. So I wait patiently for that time.

If you have a moment please leave me a note on my guest book. Your notes put a big smile on my face.

Quote of the day:

“You don’t need to see the way if you follow the one that is the Way.”
~ Unknown

Verse:

Let us hold unswervingly to the hope we profess, for He who promised is faithful.
Hebrews 10:23

Thursday, January 5, 2006 9:58 AM CST

Breath in, breath out.

Sometimes I think we get so caught up in life that we forget which path we took and why. We get so caught up in the rush, rush in life that we forget the comfort of just simply breathing in and breathing out.

But from time to time we get stopped in our tracks. Where all you can do is breath in and breath out and of course pray. You know God just put this on my heart to post this morning. Today is going to be a good day. We can decide that. Today can be our best day ever.

Quote of the day:

“We can be victorious, but only if we walk with God.”
~ Beth Moore

Verse:

I am not alone, because the Father is with me.
John 16:32

Wednesday, January 4, 2006 1:51 PM CST

I’m “running” slow this morning. I really don’t have much to post. I didn’t want anyone to think I was back in the hospital since I haven’t posted in a few days.

I have already done 2 of my 5 ivs for the day. I think the high doses of antibiotics are what are making me tired.

I talked to my surgeon on Tuesday. He agreed with me about doing the fibrin glue. He is going to talk to the doctor that would do the procedure. He believes that the abscess needs to get smaller before we try to fibrin glue. Plus, after I have that I will most likely have to go on TPN npo while things heal. That plan makes more sense to me.

It’s quiet here at the house. My boys are both gone to work and school. I got use to having them home with me over the holidays.

No doctor appointments this week…yeah!!!!!!!

Please leave me a note if you have a moment. Your notes really brighten my day.

Quote of the day:

“What seems too difficult for us is a sure sign that it belongs to God.”
~ Marie DePree

Verse:

Be on your guard; stand firm in the faith; be men of courage; be strong.
1 Corinthians 16:13

Sunday, January 1, 2006 4:13 PM CST

HAPPY NEW YEAR!!!!!!!

I know this year is going to be a good, no a great year. I just feel it, 2006. I hope you all had a safe holiday. I just realized today that Zach will be going back to school this week. It kind of made me sad because I had missed a week of his vacation. But it was out of my hands.

Friday afternoon I saw the most glorious sunset. It was so beautiful it brought tears to my eyes. What made it even more beautiful was that I was on my way home. On my way home from another week long stay at the hospital. This week was really tough on me though. Tough mentally and emotionally. No my faith hasn’t slipped a notch. I still believe He is going to heal me. Just the continuous pain and problems. Plus I have been in the hospital 5 times in the last 6 weeks (2 of those times were for a week). So you can just imagine, I was worn out and a little beaten down. I had at least 1 cry baby day. This was a day that I was by myself most of the day. Makes for a long day in the hospital.
But I guess I should back up and catch you up. Although Diva has done a wonderful job in my absence on my guest book.

I was determined I wasn’t going to be in the hospital on Christmas. I had missed Thanksgiving and Zach’s birthday, that bother me. Remember I had the drained pulled Thursday before Christmas. I still hurt thinking about that, ouch! Christmas Eve night we were at my parent’s house. During the night I starting running a low temp. But I didn’t say a word. No hospitals on Christmas. So on Christmas day, at my sister-in-love’s house I never took off my coat and stayed by the fireplace. Everyone teased me about it. Later when we got home I was so exhausted that I laid down…in my coat. When I woke up my temp was 102. But Christmas was almost over. If I could just make it through the night.

The next morning I tried to call a couple of my doctors’ offices. But they were all closed. They were observing Monday as a holiday. So that meant Bennie and I had to go to the ER or ED as they call it. It was a long, long sick day. The next day they put another drain in. I was pretty scared before, I kept telling everyone to make sure I got to sleep good. The reason is because when I got the last drain for some reason I didn’t ever fall asleep and felt them pushing that drain into my abdomen. I remember telling them, “It hurts, it hurts.” So it was very important to me to get to sleep, completely. And I did.

Later in the week I had a blood transfusion (2 units) and a study done. The study showed us exactly what we were afraid we would see. A fistula. A fistula is like a straw. So I have a “straw” from one of the loops of my small bowel connecting to the tumor. When the drain was pulled that is why within 48 hours I was deathly ill again. Now we have to agree on a plan to try to take care of this. They have talked to me about 2 options; TPN (iv nutrition) NPO (nothing by mouth) and fibrin glue. They are leaning towards TPN. But I am going to talk to them about going ahead with the fibrin glue. TPN didn’t work for me before. The thought is to let the digestive tract rest and try to heal. I have had fibrin glue twice before and it worked both times. So I am going to talk to my surgeon about it. I figure why be put me through all the discomfort of TPN if we are going to end up doing the other anyway.

I am beyond happy to be home. I do have to do my iv here at home. I have 5 every day. The first one starting at 6 am. The last one is at 10 pm. The high doses of antibiotics keep me pretty nauseous. It makes it hard to even think about cooking. But with boys you have to do that.

Please continue to pray with me for healing. Also for my boys, my heart. Please pray also for Diva. She has been having a tough time of her own.

Today is Sunday, my favorite day! I got to go to church today. It was so wonderful to be there worshipping the Lord with all my friends. Today has been a good day. So did you make any resolutions? I did. I want to be more organized and spend more time in my devotions and prayer. I can do it…anything is possible. It is a new year.

Happy 2006!!!!!!!!!!

Quote of the day:

“Encouragement costs nothing to give but is priceless to receive.”
~ Author Unknown

Verse:

Your love has given me great joy and encouragement.
Philemon1:7

Friday, December 23, 2005 9:57 AM CST

During the middle of the night the old devil tried to work on me. I woke up and my abdomen was hurting. My first thought was, I’m not spending Christmas in the hospital. My God is bigger than that. So I said a prayer and went back to sleep on my right comfort side. This morning I took some Tylenol to see it that will help with the soreness from having the drain pulled. Hopefully that will do the trick because I don’t want to take pain medicine.

I am so excited. Diva is so excited. I just can’t wait! While we are there I probably won’t have a chance to post. I will post on Christmas night. I wish you all the most wonderful, joyful Christmas! Love and blessings to you all.

Quote of the day:

“No matter what we are going through, no matter how long the waiting for answers, of one thing we may be sure, God is faithful. He keeps His promises. What He starts, He finishes…including His perfect work in us.
~ Gloria Gaither

Verse:

Be completely humble and gentle; be patient, bearing with one another in love.
Ephesians 4:2

Thursday, December 22, 2005 2:22 PM CST

I have wonderful, unexpected news to share with you. My Christmas wish was granted today. I got to have my drain removed. I am so happy. When my surgeon first called and told me he was going to give me my wish I was a little nervous. But I have taken Bennie saying and just keep repeating it to myself. “My God is bigger.” Yes, my God is bigger than any tumors and fluid collections. He’s bigger than it all and I laid it in His powerful, loving hands. I am so thankful to be drain free. Tonight I get to take a shower and sleep on my (right) comfort side. For me this is just a huge blessing. My Soul Sister said the coolest thing to me. She said that some presents you just can’t wrap. She is so right.

I know you are curious about the drain being removed. Let me just tell you, I will NEVER do it like that again, in the clinic, without anything. Never, never again! The doctor said that it would be uncomfortable, but not bad. I think they should have to have these procedures before they voice their “opinion” about how it will feel. The first part was just a little uncomfortable. But coming through the abdominal wall almost made me throw up. It took a few pulls to get it through. I was still very sick to my stomach all the way out to the truck when we were leaving. I’m feeling better now.

The other wonderful news and praise is that the tumor is smaller. The doctor that removed my drain was so kind. He showed us what the tumor looked like the day before it was drained. It was very big, shaped almost like a Coke bottle, and pressing on everything. No wonder I was in so much pain. But now the tumor looks so much better. Glory, glory and praise God for answered prayers.

I’m going to stop here for now. I think I am going to go lay down (on my right side) for a little cat nap. Thank you for all of your prayers. Lets keep sending them up. They are being answered. I have the best story about how God works in our lives. It’s all about the journey. Being on the right path makes all the difference.

Quote of the day:

“God has two dwellings: one in heaven, and the other in meek and thankful hearts.”
~ Izaak Walton

Verse:

Give thanks to the Lord, for He is good; His love endures forever.
Psalm 107:1

Lord, thank you, thank you for the answered prayers today. My heart is so full of blessings. Thank you for loving me and having a plan for me.

Wednesday, December 21, 2005 9:14 AM CST

I want to start out today’s post by wishing my parents a very happy anniversary! I love you both so much. I’m so thankful God gave me the parents He did. You are a blessing to me.

It’s only 4 days until Christmas! Have you got all of your shopping done? Bennie and I have a couple more presents to buy today and we will be finish. I believe.

I have been enjoying my Luther Vandross Christmas cd every chance I get. Because you just have to get in your Christmas music. There is only a certain amount of time to listen to it. I really love this cd. It’s just wonderful.

Today, this afternoon, I go for my ct scan. I pray that the report is good. What a wonderful Christmas present that will be. Notice I said will be. Because I have already prayed about it and left it with God. But I will say that I am not at all excited about drinking the contrast once again. Yuck! Oh well, I just drink as fast as I can and get it over with. So around 4 o’clock say a prayer for me please. That is when my ct is scheduled. Although we are going to try to get in a little earlier. Zach has a party with his youth group at 5:00. Hopefully we will get finished quickly.

My side accessory is still draining 20 to 30 cc a day. I’m not sure when I will be able to get loose of it. Today while I am there at my “Second Home” for my scan I have to go by radiology to get some more special bandages for that area. I have to change it once a week. Don’t like that very much…it smarts. But I think that this is a good thing, this morning when I flushed it (I have to flush it every morning with 5 cc of saline.) before I got the full 5 in it started leaking out of the opening. That makes me think that the center of the tumor is getting smaller. I will ask today while I am in radiology. I think it is good news.

Here I want to praise God. I don’t think I have done it near enough. I am so thankful for the way I am feeling. Praise God! Right at Thanksgiving it had gotten so bad that I even thought the end could be close. The pain, the fevers, being sick; were all just getting the best of me. I just had to let Him pick me up and carry me for a while. But what a wonderful Thanksgiving it turned out to be. The pain, fevers, and sickness all were taken away. What an answer to our prayers. If you ever doubt that prayers are answered just come to this website. God is good, so good!

Okay, so this is all for today. Get away from the computer (after you leave me a note on my guest book…ha ha) and go enjoy your family and friends. I wish you all a wonderful Wednesday!

HAPPY ANNIVERSARY BIG DADDY & DIVA! I LOVE YOU!!!!!!!!!

Quote of the day:

“Abundance is, in large part, an attitude.”
~ Sue Patton Thoele

Verse:

Is anyone happy? Let him sing songs of praise.
James 5:13

Sunday, December 18, 2005 4:46 PM CST

Happy Sunday!

What a wonderful day of worship we had at CRBC. I have had a fantastic favorite day today. You ask what is on my mind and on my heart today…Christmas. What Christmas truly is. Not all the rushing around for the perfect gift. Not all the parties. Not all the extra cooking or visiting family. Not any of all that stuff. No just simply Christmas. Jesus. He is the perfect gift you and I look for. No other gift can compare.

I know this week will test some with all the craziness of trying to finish last minute things. But my Christmas wish is that we all remember that Jesus is the reason for the season. I am going to enjoy every single day this week, thankful that I am at home and feeling fairly well. I hope that you enjoy every day also.

I thought I had a break from doctors and stuff until the 30th. But that has changed. I have to go this Wednesday for another CT scan. Yes, I do glow in the dark. No need for a night light when I am around…ha ha. My surgeon wants to check to see how the tumors are looking, especially since I still have the drain. I am praying that the drainage will soon taper down to almost nothing. That is the only way I am going to be able to get rid of this accessory. Oh happy glorious day when that happens. It’s just a matter of time and patience.

Tonight we are having dinner with our nephew, his wife, and their baby girl, Miss Alexis. Miss Alexis is Bennie’s birthday buddy. Some of you will remember that she was born early on Bennie’s birthday. I am so looking forward to seeing them. I haven’t seen her in over a month because of all the hospital stays I have had. I know she has gotten so much bigger. I can’t wait to see them. They are such a sweet family.

How did the Christmas shopping go on Friday? I had so much fun being with my mother and Becky. We laughed and had the best time together. Becky finished her shopping. I believe my mother did also. Me? No, but I did get a good start. Bennie said that we would work on it together this week. Plus, Becky has a couple of days off this week, so she said she would help me. Am I anxious about finishing up? No. I am confident that things will work out just fine. My best present of all? Well, I haven’t gotten them yet. But one that I know I am getting, that we are getting, staying at my parent’s house for Christmas Eve and day. It’s just so much fun.

I have rambled on and on. But I hope that you will take with you the “Reason for the Season”. Enjoy and cherish every day. They are truly gifts.

Quote of the day:

“God is the owner; I’m the manager. Every resource, every blessing I have today is a gift of God.”
~ John C. Maxwell

Verse:

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights….”
James 1:17

Thursday, December 15, 2005 8:53 AM CST

Good morning!

I am so thankful this morning that I no longer have to do my IV antibiotics in the morning and at night. What an answer to prayer, along with all the other wonderful answers. Now I just have to patiently wait for the right time for the drain to be removed. I will be so excited and happy when that day comes. This is a little funny for you. I love to sleep on my right side. It’s my “comfort” side. But since the drain is in my right hip I can’t sleep on my “comfort” side. So I am really looking forward to the day they remove this “accessory” from my side.

I am looking out my office window. It looks like a cold, winter day. No sunshine to be seen. I guess we will have to make our own sunshine. You know that isn’t so hard to do. Sometimes just an email to a friend can brighten their day. Or a call to say hi, I was thinking about you. Most times it’s the small things that “bring out the sunshine”.

Today is another game day for Zach. He has an in-school game against their biggest rival. It should be an exciting game. Bennie and I are looking forward to it.

Can you believe we are 10 days away from Christmas? Time just flies by too quickly. I want to enjoy every single second, soak every thing in.

Every year we spend Christmas Eve at my parent’s house. It’s such a wonderful time. We have special traditions we do every year. One of them is the Jesus birthday cake that Zach makes. It has been so much fun watching him over the years make that cake. It’s just precious. That is my favorite tradition we do and I’m sure Zach would agree too.
What are your favorite traditions?

Even though the sun is hidden by the clouds today we can make our own “sunshine”. So spread a little “sunshine” around today.

Quote of the day:

“As you practice counting your blessings, you will find that your faith is being suddenly revitalized.”
~ Robert Schuller

Verse:

Fight the good fight of the faith. Take hold of the eternal life to which you were called.
1 Timothy 6:12

Tuesday, December 13, 2005 4:41 PM CST

Well, it’s Tuesday afternoon. Yes, I am a tired little gal after yesterday. I did get to go to Zach’s basketball game. It was a nail bitter. They had to go into overtime. This is pretty cool though; Zach scored the first points of the game, the tying points that took them into overtime, and then the winning points. He was definitely on cloud nine. It was so cute to see his team mates picking him up on their shoulders. I was so thankful to be able to go to the game.

This morning my home health nurse came for her weekly visit. I was excited about her coming this morning because I knew I would get the access removed from my port. One less accessory on my body. Now I just have to get rid of the drain. So please pray with me that the output starts decreasing steadily everyday. The drain site has become inflamed so that is uncomfortable. It makes me walk kind of funny sometimes, trying not to irritate that area more.

I’m so thankful for so many answered prayers; feeling better, draining the tumor, no more iv, no port access, being alive and happy today, and being in love with life, family, and friends. I am so richly blessed. Every day is a treasure. Is every day a treasure for you? I hope so.

I know most of you have probably already finished your Christmas shopping. I have just got the first couple of presents. But I won’t stress about it. I will just do a little at a time. I’m looking forward to Friday, Becky is going to take me shopping. So hopefully I will be able to get a bunch done.

The important thing is that we don’t become so overwhelmed with all the presents and stuff. The reason for this wonderful season is Jesus.

I know, another short post. No doctor appointments, no procedures….just a great week.
Please continue to pray with my family and me for my total healing. It will be answered in His time.

Quote of the day:

“Hope is patiently waiting expectantly for the intangible to become reality.”
~ Avery D. Miller

Verse:

Find rest, O my soul, in God alone; my hope comes from Him.
Psalm 62:5

Monday, December 12, 2005 9:48 AM CST

Good Monday morning to all of you!

Today is a special day. Mine and Bennie’s 19th anniversary. God truly brought the right one into my life. I am thankful and blessed for every day we share. He is such a strength for me.

More good news. No doctor appointments until December 30th! So hopefully I can get my Christmas shopping done.

For now I am still doing my iv antibiotics in the morning and at night. I am hoping that I will be finished with them soon.

Miz Peggy, you are so right, going to church is a highlight for me. I look forward to every part of it. What better way to get your week started than with your Christian brothers and sisters? I think that is the best.

Tonight Zach has a basketball game. I am going to try to go to this one. I haven’t been in almost a month. I miss seeing him play. Plus, his game is improving every week. So, I will do my iv a little early tonight so I can be free for the game. Plus, I will rest during the day. Just doing things around the house today.

I want to thank you all for your emails and notes on my guest book. They have really brightened my days during some pretty tough times. I am thankful for each day that I feel a little stronger. Please continue in prayer with me and my family for my total healing.

Quote of the day:

“To live joyfully is to live in hope.”
~ Unknown

Verse:

I have told you this so that My joy may be in you and that your joy may be complete.
John 15:11

Friday, December 9, 2005 9:18 PM CST

God answers prayers.

Yes, He has been answering quite a few. Each day I am feeling a little stronger. The doctors finally decided that I was having such a tough time once I was released from the hospital because of a number of things; allergic reaction to one of the iv antibiotics, being dehydrated, MRSA, sepsis, and being in the hospital so many times in the last month.

I know my mother, “Diva”, has been keeping everyone up to date about me. For that I am so thankful. Until a couple of days ago I was just so tired that I couldn’t get out of bed. I started noticing a difference once I stopped the second antibiotic. My body just couldn’t function with it.

Okay, so back to some of the praising for prayers answered. Thank you Jesus, I am feeling stronger each day. I had ct scans done last Friday and today. So, we are waiting for the official report. But the doctor that placed my drain on Thanksgiving day said that the tumors look better. Now, I just need that area to dry basically. So I can have the drain removed from my hip. More praise….my oncologist said my desmoid is the first he has ever heard of doing this, basically dying from the inside. So, for now he has stopped my iv chemo. He feels that we should watch to see how things go. Plus, the bad things that I had to deal with outweigh the good of continuing right now.

Huge praise here………

Sleeping Beauty is awake!!!!!!!!!!!! My endocrinologist had said that it would take anywhere from 1 year to 18 months. Christmas would be the 18 month mark. What a wonderful early Christmas present. Now I can stop taking one of my medicines. I have to be followed by my endocrinologist for the next year.

One by one, in His time, He is answering every prayer. So I sit here boldly praying for complete healing. I have a story to share with people. I want everyone to see and know what God has done my family and me. I am forever blessed by His love for me.

What started out being such a scary Thanksgiving day turned out to be such a time of praise. The night before we were in the hospital and things looked their bleakest. To the point that Bennie was making funeral arrangements in his mind. He was a basket case. As were my parents. They all three kept going into the hall to cry. Things looked so bad.
As soon as the doctor placed the drain into that tumor they pulled 200cc of neucrotic fluid. I felt relieve immediately. Answered prayer. Since then my pain level has been basically 0 for the most part.

This week has been a busy week. I almost forgot to tell you I had an out patient procedure on Wednesday. I had to have my stent changed out. That’s not a big deal. Now we are just waiting for MRSA to clear up. Hopefully, (prayerfully) I will getting the stent removed in the near future. See things are just clicking along. One by one, in His time.

I know this post is rambling. But so much has happened it hard to catch you back up. Please continue with me in prayer. My total healing is around the corner.

Thank you all for your notes on my guest book and the emails. That few minutes you spend to do that really brightens my day. Thank you for the blessing of your love and friendship. It makes the journey so much easier knowing we are all praying together.

Quote of the day:

“Peace is to be found in the acceptance of things we are unable to change.”
~ Unknown

Verses:

Never worry about anything. But in every situation let God know what you need in prayers and requests while giving thanks. Then God’s peace, which goes beyond anything we can imagine, will guard your thoughts and emotions through Christ Jesus.
Philippians 4:6 & 7

Thursday, December 1, 2005 10:45 AM CST

I am so happy to be home!

But still so very tired. Tired to the point that Bennie was worried yesterday. Every time he came home to check on me I was asleep. So we called the doctor. He said that this abscess in the tumor was pretty nasty and I am just having to regain my strength.

So I do something around the house and then nap. Do something else and nap again. I’m looking so forward to my energy level coming back. Plus, the good news of tumor shrinkage. My ct scan is Friday. We see the surgeon on Monday to go over the report.

I know this is short. Just so tired. Please continue to pray for my family and me. Being in the hospital for the last 9 days was very hard on Bennie and Zach. I’m just ready to be my ole self once again. In God’s time.

Quote of the day:

“A little faith will bring your soul to heaven, but a lot of faith will bring heaven to your soul.”
~ D.L. Moody

Verse:

Blessed are they that have not seen, and yet have believed.
John 20:29

Tuesday, November 29, 2005 11:53 AM CST

I saw the most wonderful glimpse of a rainbow yesterday afternoon on our way home from the hospital. It was just there long enough for Bennie and I to see it. What a beautiful promise to all of us. It brought a smile to my face and in my heart, knowing things were going to be okay. I believe we are turning the corner. These tumors can’t stand against all this prayer.

I am beyond happy to be back home again! Being in the hospital for the last nine days has been very hard and stressful for the entire family. Especially during the holiday and Zach’s birthday. Plus, he wasn’t allowed on the floor to see me because it was the myo-suppression/burn unit floor (no one under 17).

I guess I should try to backtrack to catch you all up. This could take a few posts to do because a lot has gone on in the last couple of weeks.

Remember Zach and I went a couple weekends ago to stay with my parents and I ended up in the hospital the next morning? I believe that was the start of this. Of course they treated me for all the symptomatic things. I seem to improve and they sent me home after 3 days on the hospital. Only to be re-admitted 5 days later. I spent another 3 days in the hospital and was sent home feeling a little better. But within hours of getting home things started going really bad. I tried so hard to hide how I was feeling because we had mother here, Josh and Alicia, it was the day before Zach’s birthday, and Thanksgiving. I spent the entire day Wednesday in the bed, on a heating pad, taking pain medicine every 3 hours…with no relief. I was directly admitted back into the hospital that night at 6:00. They sent me for a ct scan and things didn’t look good. Exactly what we had been trying to avoid was happening. I had a small bowel obstruction. The nurses told Bennie to call my parents because I would go for emergency surgery within an hour. Bennie talked to the doctor and told him we really needed to have my surgeon be a part of this. We would both feel better since he knows me. From that point on it was a waiting game. Things got pretty tense; my blood pressure kept dropping, so much pain, so much stuff. Bennie, Mother, and Big Daddy spent a lot of time in the hallways (I found out later) crying and trying to console each other. It looked like this was going to be it, all.

What started out as a scary, sad Thanksgiving, turned out to be the best Thanksgiving ever!!!!!!

After waiting all night thinking I was headed at anytime to emergency surgery, and deathly sick the whole time. My surgeon came in and gave us our first glimpse of hope. He didn’t think it was an obstruction. He believed it was neucrotic fluid (basically dead tumor). So I went down to have the most painful drain place ever. But do you know they drained 200cc of fluid out of there!!!!!! I know it’s proof that all these prayers are being heard and answered.

The next part was there were quite a few bacteria in that fluid. So infectious disease had to figure out what and how best to treat it. I am home now with my drain and iv antibiotics every 12 hours for the next 2 weeks. Friday I am scheduled for a ct so we can see how the tumor is looking. I will see the surgeon on Monday to go over the report…get the official good news.

I am pretty tired. But so happy to be home again. I have more to post but will save it for later. I wish and pray for you all to have a truly beautiful day. God is good.

Quote of the day:

“If a heart can conceive it, and the mind can believe it, God can achieve it.”
~ Charles Polland

Verses:

Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18

Thursday, November 17, 2005 1:48 PM CST

Today I want to share part of the lyrics to this song with you. The words are so important. Especially when we are in the middle of the journey, not sure which way the path will lead us next. This song is the assurance we need. I really love it.

Point Of Grace / You Will Never Walk Alone

Along life’s road/ There will be sunshine and rain/ Roses and thorns, laughter and pain/
And ‘cross the miles you will face mountains so steep/ Deserts so long and valleys so deep/ Sometimes the Journey’s gentle/ Sometimes the cold winds blow/ But I want you to remember/ I want you to know
(Chorus)
You will never walk alone/ As long as you have faith/ Jesus will be right beside you all the way/ You may feel you’re far from home/ But home is where He is/ And He’ll be there down every road/ You will never walk alone

Don’t you just love that song? I find such comfort in it. I am so glad that I never have to walk a single step in this journey alone.

Today I am a little tired, after effects of being put to sleep. Plus my throat and jaws are pretty sore, after effects of having an upper scope. The soreness will go away within a day or two.
You know what I find so wonderful? I am starting to feel more like myself again. Not having chemo last week and this week has made a difference in the last day or two. The chemo had just zapped all my desire to do anything away. It was all I could do to put one foot in front of the other. Plus, I always try to put my best face forward. Sometimes that is pretty tiring. But it is important to me. So I will ask each of you to please join me in prayer. Next week I will see my oncologist before my chemo treatment. I believe he is going to start me on 3 weeks on, 1 week off. Please pray that my energy level will continue to build. I am trying very hard not to think about getting right back into the middle of the battle next week. I just keep singing the words to the chorus; You will never walk alone/ As long as you have faith/ Jesus will be right beside you all the way/ You may feel far from home/ But home is where He is/ And He’ll be there down every road/ You will never walk alone.

This too shall pass.

I am thankful for today.

Quote of the day:

“The truth is that by definition all our time is free time, ours to spend or invest as we choose.”
~ Unknown

Verse:

Yet I will rejoice in the Lord, I will be joyful in God my Savior.
Habakkuk 3:18

Wednesday, November 16, 2005 1:59 PM CST

The sun is shining and I have good news!!!!!!

Thank you so much for all of your prayers. The procedure (upper scope) went smoother and easier than any I have ever had. I had the most assured calm that everything would be fine. But the best news……no polyps!!!!!! So my doctor said that I can wait a year to have this scope again. Unless anything changes.

I’m back home and pretty awake considering. My throat isn’t even very sore. I just sound a little hoarse.

I want to say thank you to each of you for blessing my life. You say that I have blessed your life. But that most definitely goes both ways. I am so thankful for you.

Another thing I am so thankful for is NO CHEMO this week! Yea!!!!!!! So I have a 2nd chemo free week. I can feel my energy and the desire to do things coming back to me slowly. What a wonderful feeling. I needed this break. Because it was getting the best of me. I didn’t even feel like myself. I’m better now. Thank you Father!

My heart is full, too full right now to really be able to post it all right now. I prayed this morning that God would work in my heart and give me some wonderful words. So now I will collect my thoughts and not rush this. This journal is important to me not because it‘s about me. But because it‘s about how He works in my life and the lives around me. I am blessed and so very thankful.

Quote of the day:

“Nothing we do is more powerful or more life-changing than praising God.”
~ Stormie Omartian

Verse:

Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God’s will for you who belong to Christ Jesus.
1 Thessalonians 5:16-18

Tuesday, November 15, 2005 5:18 PM CST

~*~*~*~*~*~*~*~*~Addition to this post at the bottom.~*~*~*~*~*~*~*~*~

My weekend didn’t go exactly as planned. I got to spend all of an afternoon and evening (Friday) with my parents. During the night I got deathly sick. My temp ran as high as 102.7 and even taking Tylenol it only went down to 101. I shook so hard my jaws were sore.
I learned a few good lessons from this. First of all the doctor in the ER said that I should not go anywhere without my Dexamethasone (emergency adrenal dose). He said that I have a number of things working against me; immune suppressed due to chemo and adrenal insufficiency. The other thing I learned is that it’s not always good to try to be tough. Being tough this time almost got me into a lot of trouble. By the time my mother got me to the ER the next morning my blood pressure got as low as 80/40. The nurse pushed 2 bolus bags of fluids through me. A bolus bag is when they need to get a person hydrated and their blood pressure up.

I ended up spending 2 nights and 3 days in the hospital. They still aren’t sure what caused this. Most likely a viral infection. That same viral infection might just affect you for a day. But for me I generally end up in the hospital.

While I was in the hospital they drew bottles and bottles of blood. Yes, they were actual bottles. They cultured blood a couple of times from my vein and then they also drew from my port to make sure I wasn’t sick due to an infection there. All of those came out okay.

Today I am having to watch my blood pressure. While I was in the hospital, because my pressure had gotten so low, they didn’t give me my blood pressure medicine. They got my pressure back up and it was perfect in the hospital without medication. This morning when I first woke up I took it and it was a little high. I waited about 20 minutes and took it again and it was down to 115/82. So no BP medication for now.

I didn’t get out of the hospital until sunset yesterday. What a beautiful sunset it was. I was so happy to see the perfect canvas He made. I told Bennie it was absolutely beautiful. I hadn’t seen the sun since Saturday morning. I was a happy girl. Now all I needed was to get home to my boys.

Oh, since I was so sick, I don’t have chemo for this week. I’m so excited about having another week off! Hopefully my counts will build back up. Plus more energy would be nice.

I want to thank all of you for your wonderful love, support, prayers, calls, emails, and notes. Once again He has shown me that I still have work to do here. Each day is a gift. I am so thankful for today.

If you have a moment a note on my guest book from you would really bring out the sunshine in my day

Quote of the day:

“Wherever you are, it is your friends that make your world.”
~ William James

Verse:

Your love, O Lord, reaches to the heavens, your faithfulness to the skies.
Psalm 36:5

I just got back from the doctor. I was suppose to see this doctor yesterday. But of course, since I was in the hospital that wasn’t possible. So he saw me today. And guess what? He scheduled my ERCP (upper scope) for tomorrow morning at 8:30. I have to be at Williamson County Medical Center at 6:30 in the morning! Yuck. But he wants to do the scope this week while I am skipping chemo. Hopefully he won’t find any polyps.

I just wanted to add this since I will be out of commission tomorrow. Put to sleep once again. I should get frequent flyer points or something, don’t you think? Ha ha

Tuesday, November 15, 2005 8:54 AM CST

My weekend didn’t go exactly as planned. I got to spend all of an afternoon and evening (Friday) with my parents. During the night I got deathly sick. My temp ran as high as 102.7 and even taking Tylenol it only went down to 101. I shook so hard that my jaws are sore.
I learned a few good lessons from this. First of all the doctor in the ER said that I should not go anywhere without my Dexamethasone (emergency adrenal dose). He said that I have a number of things working against me; immune suppressed due to chemo and adrenal insufficiency. The other thing I learned is that it’s not always good to try to be tough. Being tough this time almost got me into a lot of trouble. By the time my mother got me to the ER the next morning my blood pressure got as low as 80/40. The nurse pushed 2 bolus bags of fluids through me. A bolus bag is when they need to get a person hydrated and their blood pressure up.

I ended up spending 2 nights and 3 days in the hospital. They still aren’t sure what caused this. Most likely a viral infection. That same viral infection might just affect you for a day. But for me I generally end up in the hospital.

While I was in the hospital they drew bottles and bottles of blood. Yes, they were actual bottles. They cultured blood a couple of times from my vein and then they also drew from my port to make sure I wasn’t sick due to an infection there. All of those came out okay.

Today I am having to watch my blood pressure. While I was in the hospital, because my pressure had gotten so low, they didn’t give me my blood pressure medicine. They got my pressure back up and it was perfect in the hospital without medication. This morning when I first woke up I took it and it was a little high. I waited about 20 minutes and took it again and it was down to 115/82. So no BP medication for now.

I didn’t get out of the hospital until sunset yesterday. What a beautiful sunset it was. I was so happy to see the perfect canvas He made. I told Bennie it was absolutely beautiful. I hadn’t seen the sun since Saturday morning. I was a happy girl. Now all I needed was to get home to my boys.

Oh, since I was so sick, I don’t have chemo for this week. I’m so excited about having another week off! Hopefully my counts will build back up. Plus more energy would be nice.

I want to thank all of you for your wonderful love, support, prayers, calls, emails, and notes. Once again He has shown me that I still have work to do here. Each day is a gift. I am so thankful for today.

If you have a moment a note on my guest book from you would really bring out the sunshine in my day

Quote of the day:

“Wherever you are, it is your friends that make your world.”
~ William James

Verse:

Your love, O Lord, reaches to the heavens, your faithfulness to the skies.
Psalm 36:5

Thursday, November 10, 2005 7:20 PM CST

YEA!!!!!!!!!!

The boy’s varsity (Zach’s team) won today against their biggest rival on their court. It was a nail biting game until the very end. The final score was 36 - 29. This was the first time they have won against this team in 4 years (Zach told me this).

Zach and I are excited. Tomorrow my parents are going to pick us up to spend the weekend with them. We don’t get to do this very often because once basketball season starts, it’s all about ball. This weekend just happens to be free. I feel bad about leaving Bennie alone for the weekend. But sometimes you just gotta take that Mother love when you can.

Bennie is so great about the times I go to spend with my parents. He will usually suggest it first. He knows how connected we are. I know this weekend is going to fly by so fast. Time always does when my mother and I are together. I am looking forward to just chilling with both of them.

I can tell my energy level is a little better. I think skipping chemo this week was a good thing. Hopefully skipping this week will give my counts a chance to rebound some.

I had to call my urologist office today and leave a message for the nurse. I have been so fortunate to be able to keep this stent for almost 5 months. Stents usually last from 3 to 6 months. So I am getting close to having to have it changed out again. Not a big deal. Just another time to be put under. But who’s counting now?

Special Prayer Requests

My Uncle Don - He is going for testing next week. He needs a kidney transplant.
Zach - has to have a root canal tomorrow.
Bennie - work and his mother’s condo he is renovating.
My Mother - She has to have a biopsy of her kidney.

You know I can’t end without doing some praising.

Praise

The love of our heavenly Father
Me - my energy level being a little better.
My family and friends
Alexis - my great niece getting to come home from the hospital.
Plus this special praise goes out for Miss Kyla.

HAPPY 13th Birthday on Friday Girlfriend!!!!!!!!!!!!!!!!!!!!!!!

Quote of the day:

“The bible teaches that you don’t determine a persons’ greatness by the value of their wealth but by the wealth of their values.”
~ Rick Warren

Verse:

Create in me a pure heart, O God, and renew a steadfast spirit within me.
Psalm 51:10

Thursday, November 10, 2005 4:27 AM CST

I thought I would go ahead and post now while I was up anyway. Because later today Zach has an away game during school. Can’t miss one of the boy’s games you know.

It‘s still dark outside, too early for the sun. I’m wide awake and feeling the most wonderful peace. Peace and also thankfulness. Yes, I am thankful for this journey. No matter how hard it may be at times I have never question God. I know this is important.
It’s important how I walk this journey. Because we never know who we are affecting in our normal daily walks. So every day we should stay very aware of the fact that how we live our lives affects not only us, but those around us. Even that person we saw in passing.

Every so often someone will come up to me and tell me how much my posts mean to them. What a wonderful blessing that is to me. Because, as I always tell them, I write what is on my heart. This is Glimpses of Stephanie. So to hear that what I write meant something to someone means so much to me. Thank you for walking this journey with me. I am so very blessed by all of you.

I know this post is short. I will try to post after we get back from Zach’s game.

Quote of the day:

“Jesus taught that the evidence that confirms our leaps of faith comes after we risk believing, not before.”
~ Gloria Gaither

Verse:

The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living.
Hebrews 11:1

Amen.

Wednesday, November 9, 2005 8:34 AM CST

I am so happy that I don’t have chemo today. I have a week to build up some energy before I jump back in. Yesterday I noticed I felt a little better during the middle of the day. About the time I had lunch with the Elderberries.

These men and women, the senior saints of CRBC, are just precious. I enjoyed getting to spend time with them. I gave my testimony to them and also explain about my genetic disease. Afterwards we all held hands and each of them said a prayer for me and my family. I will hold dear to my heart my lunch with them yesterday.

I don’t really have anything else to post right now. I’m still feeling pretty tired this morning. Oh here’s something funny. Every time I see my oncologist I have to fill out these papers about how I am feeling. Bennie and I always put something funny on the first question. “Any new problems since last visit?” Last time I wrote, “All my get up and go has got up and gone”. Another we have used is; Son eating me out of house and home. There are more but I just can’t remember them right now. My doctor gets a good laugh every time. He never knows what I’m going to write.

I just looked out my window and it promises to be another glorious day. How blessed we are to be enjoying this kind of weather here in TN. So make sure you enjoy this beautiful day, get outside for some of it, feel the breeze, look at the canvas. Yesterday’s canvas was spectacular to me, just breathtaking. Enjoy every minute of today.

If you have a moment click over to my guest book and sign it so I know you’ve been by. Your note is sure to brighten my day and maybe even give me a little pep in my step…ha ha.

Quote of the day:

“No one can believe how powerful prayer is and what it can effect, except those who have learned it by experience.”
~ Martin Luther

Verse:

This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us.
1 John 5:14

Tuesday, November 8, 2005 10:11 AM CST

I’m so excited…I don’t have any more appointments with my doctors this week and no chemo!!!

Today I get to have lunch with the Elderberries, our senior saints at CRBC. They asked me to have lunch to get to know me a little better and also so I can share my testimony with them. I’m looking forward to spending this time with them.

I will let you know all about it later this afternoon.

Quote of the day:

“Several times along my life’s journey, I had nowhere to turn except into my heavenly Father’s arms. There I remained quiet, soaking up His love for as long as I needed.”
~ Jean Otto

Verse:

May your unfailing love rest upon us, O Lord, even as we put our hope in You.
Psalm 33:22

Monday, November 7, 2005 5:01 PM CST

You know I have been struggling with exhaustion due to the chemo. It’s hard for me to accept (human nature) that I just can’t do something, just don’t have the energy to push through. But I realize that this is only for a season. A friend of mine told me this was the perfect time to be tired because I could hibernate like a bear and then come out like a
butterfly in the Spring.

I am very thankful to be where I am now. I know that I have come so far and been through a great deal. The hardest days were back when I had an open wound, sepsis, was only 98 lbs, on TPN, and so on. Those were the hard times. The times when all I could do was look up and ask to be carried through. So I know that He will be here as always, once again. How comforting that is.

I have to go see my oncologist later this morning. I will post after to let you know what we decided.

I have finally made it back home. After my appointment I had to ride around with Bennie because he had to get some work done. So I napped in the truck while I waited for him.

The doctor decided, and we agreed, not to do chemo this week. He said that most patients have more recovery time then me. They usually do 2 weeks on and then a week or two off. I am going to try 3 weeks on and 1 week off. I am praying that I will be able to tell a difference this next week.

Zach has his first home basketball game tonight. We are all excited.

Quote of the day:

“Nothing before, nothing behind;
The steps of faith falling on the seeming void, and find
The rock beneath.”
~ John Greenleaf Whittier

Verse:

Our steps are made firm by the Lord, when he delights in our way; though we stumble, we shall not fall headlong, for the Lord holds us by the hand.
Psalm 37:23 & 24

Monday, November 7, 2005 5:01 PM CST

Saturday, November 5, 2005 5:46 PM CST

I had to go in to see the doctor today. Not my oncologist. He’s not in on Fridays. Bennie and I at this point really don’t like to have to catch a doctor up on my case. It’s just too much. But the doctor I saw today was very kind. I have to go back in on Monday to see my oncologist to discuss whether or not to continue the chemo or if there is another treatment I can try. Today the doctor had blood drawn to check me for hypothyroidism. I also got a B-12 shot.

It’s 1:00 in the morning and I can’t sleep. I am praying and asking you to join me in my prayer. In Philippians 4:6 & 7 Paul tells us, “Never worry about anything. But in every situation let God know what you need in prayers and requests while giving thanks. Then God’s peace, which goes beyond anything we can imagine, will guard your thoughts and emotions through Christ Jesus.”
The devil is trying to really work on me, making me worry about my medical bills. I am so thankful for the benefit account that I have had for the last year. It’s been over a year ago since the Chicken Roast/Concert/Bake Sale/ Car Wash/Lemon-aide Stand Benefit. Since then my medical bills have increased to over a $1,000,00 a month just to keep up to date. So I am asking for you to pray with me for peace of mind. I don’t have the energy to waste on this worry. I am giving this to the Lord.

Now that I have share my request with you I am going to try to get some rest. I will post again in the afternoon.

As you can tell the website has not been responding this morning. Hopefully I will be able to post this soon.

Quote of the day:

“No difficulties in your case can baffle Him…If you will only put yourselves absolutely into His hands and let Him have His own way with you.
~ H. W. Smith

Verse:

My soul finds rest in God alone; my salvation comes from Him.
Psalm 62:1

Thursday, November 3, 2005 10:18 AM CST

It’s when we are at our weakest that we can truly feel the strength of God. To feel that strength all you have to do is lift your hand and say His name.
Right now I have very low strength. My counts are down. But hopefully the doctor will be able to prescribe some medicine to boost my energy level. They put some chemo patients on Ritalin. Isn’t that funny? Each week I decline a little more in my energy level. Today I can hardly get out of bed. Bennie had to leave early for work this morning. So I had to take Zach to school. I took him in my pjs with a coat over them! That is so unlike me. But all I could think about was getting him to school so that I could climb back in my warm bed. If one of my buddies would have seen me she would have passed out. She always tells me she remembers first seeing me when our boys were in elementary school. I was the mom that walked her child in every day. So I had to be ready for the day. Today, right now, still in my pjs. The house is warm and quiet. A good time to pray and listen to my music.

Chemo yesterday…was long and tiring. They had a little trouble with my port access. Not any fun for me…ouch. This afternoon I start my “Rescue” medicine for the next 24 hours.

A note from you would so brighten my day.

Quote of the day:

“God designed the human machine to run on Himself.”
~ C. S. Lewis

Verse:

God is our refuge and strength, an ever-present help in trouble.
Psalm 46:1

Wednesday, November 2, 2005 8:17 AM CST

I am surely blessed beyond measure by all of you. God has truly blessed me with so many friends that continue to lift me and my family up in prayer. Thank you so very much for traveling this journey with me.

Yesterday evening Zach had his first basketball game of the season. Yes, basketball has officially started. Well, yesterday he wanted to get there for the JV game to support them. That meant we would be there for 3 games total….4 hours of basketball. Talk about bleacher bottom, oh yes. Queen, Bennie, and I were laughing because we all agreed that the wall we were sitting up against should recline just a bit for comfort. The games all went great. Harpeth won all 3. What a great start to a season.

When I got back home from the games of course I came in here to my computer. Boy did I have such a wonderful surprise. So many notes of encouragement on my guest book. You lifted me up more than you know. Thank you so much for your love and selfless kindness to me. Blessings to you all.

This morning I am doing things around the house until time for chemo (11:00). I did some research. I love to do this to be informed of new things. Anyway, I looked up about chemo and fatigue. There is actually an injection they can give you if you are anemic enough. This injection is suppose to boost your energy level a little. So you know I will be asking my doctor about it. At this point, what’s one more stick with a needle.

You know I use to be afraid of needles. Well, I am way over that one. One way to get over a fear is to pray about it and then be faced with it over and over again. Takes the fear right out of it.

Well, I better stop here for now. I might post later today depending on how I am feeling after treatment today. I hope you all have a fantastic day!

Quote of the day:

“All I want to do is give this life to You. And let Your will be done till it’s all I want to do.”
~ Ginny Owens “All I Want To Do”

Verse:

The prayer offered in faith will make the sick person well; the Lord will raise him up.
James 5:15

Tuesday, November 1, 2005 1:11 PM CST

Good Tuesday afternoon to you!

My guest book has been pretty quiet for the last few days. Today I am going to encourage and ask you to please leave me a note on my guest book. It doesn’t matter if it’s just to say hi. Your notes and emails are such an encouragement to me.

Each week I find myself less resilient after chemo. So I am dreading chemo this week, because I don’t even feel like I have bounced back after last week. Sorry I don’t mean to whine. I just wanted share some of how I am feeling right now. Another thing also, I’ve started having bad dreams again (so unlike me - but a side effect of chemo). So I’m not resting very well, which makes me tired on top of the chemo. It’s all connected.

Right now I am 1/3 of the way through this round of chemo. Last night, Halloween, I looked at Bennie and told him that this wasn’t really a life right now. I was sad because usually on Halloween we go over to a friend’s house to hang out and pass out candy. This year I knew I didn’t have the energy to do it. So I was sad.

So today I just keep on singing the chorus from “We Live” by Superchick

Chorus: We live we love We forgive and never give up Cuz the days we are given are gifts from above Today we remember to live and to love We live we love We forgive and never give up Cuz the days we are given are gifts from above Today we remember to live and to love

Quote of the day:

“The really great person is the person who makes every person feel great.”
~ G. K. Chesterton

Verse:

Your love has given me great joy and encouragement.
Philemon 1:7

Sunday, October 30, 2005 4:12 PM CST

Well, we have been in and out of the hospital for the last couple of days.

No, it wasn’t for me this time. Scared you didn’t I. No, we had a new addition to the family, born on Bennie’s birthday. Miss Alexis Grace Williams was delivered 5 weeks early weighing 6 lb. 1 ¾ oz. Mother and baby are doing good. This is the first grandbaby for one of Bennie’s siblings. But now that the box has been opened, who knows who will be next.

Back to Miss Alexis, she is absolutely beautiful! What a wonder of God’s grace and love. To hear her newborn cry took me back almost 14 years. 14 years next month! How did the time go so fast? Isn’t it amazing? The blink of an eye. We just have to make the best of what we are given. Today is a treasure, enjoy it.

Quote of the day:

“It is not what he has, or even what he does which expresses the worth of a man, but what he is.”
~ Henri Amiel

Verse:

But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.
Galatians 5:22 & 23

Saturday, October 29, 2005 7:04 AM CDT

Before I get started with anything else let me just tell you the most important thing about today. Today is my Bennie”s birthday! So…

HAPPY BIRTHDAY BENNIE!!!!!!!!!!!! I LOVE YOU!!!!!!!!!!!!

If you get a chance today give him a call. It will be such a wonderful surprise to him. Just wish him a happy birthday. Let the spotlight be on him for at least a day, his day.

I’m up early posting for a few reasons. The first one is because I really don’t feel very good. Sometimes my insides just don’t feel right and that’s how I feel right now. So I wait to see if it will pass. This week’s treatment has really kicked my tail.
The second reason for this early post is that Bennie wants me to go with him today to my Butterfly Friend’s house. So I wanted to get a little posted, especially about his birthday. Hopefully today we will be seeing my parents also. I can’t wait to see my mother and wrap my arms around her so tight. I miss you Mother. I’m glad you and Big Daddy are home.

Today’s verse is from my devotion this morning. It talks about how unseen promise exist. I know that I walk every day because of His promise. One day soon I will be rid of these nasty tumors too. It’s all a part of the journey He has for me.

Quote of the day:

“Ten thousand difficulties do not make me doubt.”
~ John Henry Newman

Verse:

And whatever you ask for in prayer, having faith and believing, you will receive.
Matthew 21:22

Don’t forget to click over to my guest book. Leave me a note to let me know you’ve been by. Your notes and emails truly brighten my day and bring a smile to my face. Thank you so much!

Thursday, October 27, 2005 1:02 PM CDT

Wednesday morning was a much better day and time to go for chemo. Things went a little quicker plus we saw the doctor to go over the report. He told us basically what I have already posted. No shrinkage…but no growth. One of the loops of my small bowel is encased by a tumor. Right now there isn’t any dilation in that area, and the stomach isn’t distended. So that is good. I will just have to be real careful about eating and bathroom issues. He told me if I start to have trouble it could get bad very quick. So I am drinking my medicine twice a day. Not going to have that trouble.

I decided that I’m not too let down about the no shrinkage yet deal. Because I have had some shrinkage in the past. I just haven’t been on this treatment long enough. I had my 8th round yesterday. Oh, and my doctor said that he was going to France for some meetings. He is hoping to be able to speak to a doctor there that has quite a few desmoid patients. Pick his brain for treatments he has used on his patients. So there is a chance that my treatment could change. If there is an experimental drug that is having a results with desmoids I might be changed to that. We’ll just have to wait and see. Whatever he decides I feel at peace with it.

Yesterday afternoon the chemo kicked in on me. I was completely wiped out. Laid across the bed, lights out. Later in the evening I tried to watch a movie with them. But I could barely keep my eyes open. Bennie finally said that I should go ahead to bed. Today, yes, still pretty wiped out. I started my rescue medicine at 11:00 . So maybe I’ll feel a little better later today. Being this tired is really hard to take.
For those of you that aren’t really sure what I am talking about when I said rescue medicine, I’ll explain. 24 hours after each of my treatments I take 3 pills every 6 hours for 24 hours. So on rescue mornings my total pills (all medicine I have to take) are 11. I almost rattle when I walk around…ha ha.

Well, that’s about all I have for today. I’m going to try to get something done around my house between all my napping and stuff. Thank you all more than I can ever adequately put the words together to say, for your continual prayers, notes on my guest book, emails, calls, cards, love and support. I am so very blessed each and every day of my life by you. I love you.

Quote of the day:

“What is courage? It is the ability to be strong in trust, in conviction, in obedience. To be courageous is to step out in faith - to trust and obey, no matter what.”
~ Kay Arthur

Verse:

Therefore let us approach the throne of grace with boldness, so that we may receive mercy and find grace to help us at the proper time.
Hebrews 4:16

Wednesday, October 26, 2005 1:41 AM CDT

**** I have tried and tried to post this since yesterday afternoon. The website just seems to be having some trouble responding lately.

Now let me see. I have so much to share with you. I’ve been busy up until just now. Talk about worn out…that would be me. This morning I had my podiatrist appointment, which went fine. My toe is healing nicely. Then we had to pick Zach up from school for a dental appointment. That one didn’t go quite as well. The dentist sent us to an endodontist for a root canal! Yuck. We thought he was having the root canal done today. But that wasn’t the case. The doctor just looked at it and talked to us about the next visit, when he would actually do the root canal. Of course, they charged us for walking in the door today. Not having any dental insurance is a huge bummer.

I just received my CT report. You know I have been talking about shrinkage. Well, they didn’t use that word in the report. But it did say that the tumors appear stable. Which means no growth. There is a small problem, one of the loops of my small bowel is encased by one of the tumors. Yes, when I read the report the first time I was a little let down. But then I started thinking about how I have only had 7 treatments so far. I still know the shrinkage will come. It will come in His time, not ours. So, now I wait to see the doctor in the morning to go over the report. I will fill you in on anything else from the report tomorrow.

I want to share my devotion with you again. It just really touched me. Today was about nothing being perfect, except for God. Flowers aren’t perfect, nor all trees. God concentrates only on perfection in His perfect love.
So don’t wait for the perfect time to tell that someone you love them. The time is perfect now. Don’t wait to send that sympathy card until you have the perfect thing to write. Whatever you write will be perfect to that person. The big thing is that you shouldn’t wait. Because none of us are promised tomorrow.

Quote of the day:

“We must learn to wait. There is grace supplied to the one who waits.”
~ Mrs. Charles E. Cowman

Verse:

I trust in You, O Lord, I say, “You are my God.” My times are in Your hand.
Psalm 31:14 & 15

Monday, October 24, 2005 9:02 AM CDT

Brrrrrrr! It’s chilly here in K.S. I actually wore gloves this morning taking Zach to school. Not to mention the coat I threw on too. I was determined not to be cold. Because I spent the afternoon yesterday being cold.

Okay, so this week this is what is going on. Today (this afternoon) I go for my CT scan. Tomorrow I have my return visit to my podiatrist. That is so funny to me. Then Wednesday we get the good news of shrinkage. Plus I have chemo. As you can tell I am excited and full of anticipation waiting for my report.

I have a few prayer requests for today that I would like to share with you. If you would say a prayer for these I would appreciate so much. Thank you for your love and support.

** CT scan today - everything from drinking the nasty contrast to getting the iv. I’m praying that it all goes smoothly and quickly.

** Wednesday - Doctor, report, and chemo. I really believe we will be getting great news. I’m looking so forward to this day.

** Bennie - He is such a wonderful man. God blessed me with the best husband. Pray for his project he is working on and that he finds another one to work on.

** My Uncle Don, Aunt Vera, Emily, & Kristina - My Uncle Don is going to have to have a kidney transplant. I ask for you to pray for the entire family because it affects each of them.

Thank you so much for joining me in prayer for these requests. I am so blessed and thankful to be able to share this with you, my friends.

Quote of the day:

“ God is the owner; I’m the manager. Every resource, every blessing I have today is a gift of God.”
~ John C. Maxwell

Verses:

Keep and protect me, O God, for in You I have found refuge, and in You do I put my trust and hide myself.
Psalm 16:1

I wanted to share that verse with you because it meant so much to me this morning during my Quiet time. My devotion this morning talked about Ministering to Your Emotions. It said that you should do something kind for yourself to keep your emotions healthy; but not to be ruled by them. It also urged us to find some time alone with God, listen to teaching or music tapes or cds, and refill your heart with an awareness of God’s presence. I am enjoying singing along with my praise and worship this morning. It definitely gets my mind off drinking that nasty, nasty contrast.

As I type this post out I am listening to my favorite songs. Right now I am listening to “I’m Ready”. My favorite part of this song is…

“This is what it’s like to surrender to You/When everything is laid down at Your feet/When it’s not about me/ But it’s all about You”

If there is anything you are hanging on to, thinking you can take care of it. Please, let today be the day you give it to God.

Saturday, October 22, 2005 2:37 PM CDT

This website has been and is such a gift to me. I have been able to make so many new friends, get back in touch with high school friends (Mississippi), and at the same time keep all my family and friends up to date on my journey. What a blessing. What a gift.

I am looking forward to Monday and Wednesday this week. Monday afternoon I have my CT scan done. Then Wednesday I see the doctor to go over the report and have chemo. I feel it in my heart…shrinkage. I just know we are going to hear good…great news on Wednesday. I’m so excited waiting to get that news.

My day today…
Zach has a Shoot-A-Thon fundraiser for basketball at noon. So we will be at the gym for a little while today. Kind of practice for the games to come in November. Zach is so excited about this season.

After that I am going to enjoy this beautiful day and everything about it. Plus, tomorrow is my favorite day.

Quote of the day:

“When we are in a situation where Jesus is all we have, we soon discover He is all we really need.”
~ Gigi Graham Tchividjian

Verse:

You need to persevere so that when you have done the will of God, you will receive what He has promised.
Hebrews 10:36

Keep those emails and notes on my guest book coming. They truly brighten my day. Thank you for taking the time to make a difference.

Friday, October 21, 2005 9:17 AM CDT

I was so tired yesterday. Many of you have asked how long my chemo takes. Yesterday I waited 3 hours before they even started. Some kind of mix up, confusion. So yesterday took 4 hours. Last night I was so wiped out that I went to sleep at 8:30. Of course, I had about the same kind of night as the night before. I thought I would sleep good because I was so tired. But that was not the case. It was another up and down night. So tonight I will most definitely take my Ambien.

On to other things…..

Did you check out the “canvas” yesterday? Tennessee has to be about the most beautiful places right now. Between the beautiful mountains, fall leaves, sky, and so on. I just drank in the beauty of it as we drove home yesterday. I think doing that is good for the body. It definitely makes me feel a little better after I have had my “outside” time. So did you check out the “canvas” yesterday? Don’t miss it today.

Quote of the day:

“Life is God’s novel. Let Him write it.”
~ Unknown

Verse:

Whoever finds me finds life and receives favor from the Lord.
Proverbs 8:35

Thursday, October 20, 2005 3:05 AM CDT

**I actually posted this yesterday morning. But the website was down. The last few days have been hit or miss to get a post on. Hopefully they will get it worked out.

Good morning!
What a beautiful, glorious Fall day it is.

The beauty of this day is like a promise of good news to come. Good days, good things. All a part of this journey.

My toe is recovering…ha ha. I hobbled around yesterday and stayed inside. I didn’t want to risk stubbing my toe or someone stepping on it.

Today I will venture out.

I am very thankful today for the love of family and friends. I know God surrounded me with all of you to help keep me encouraged and lifted up. You are all a part of this journey. We share it together. Thank you for sharing with me, going through this with me.

Tomorrow is “chemo” day. I am feeling much better after last week’s hospital stay. So there isn’t any reason I couldn’t do chemo this week. Then on Monday I have my CT scan. Wednesday I see the doctor (before chemo). I am looking forward to good news on Wednesday. I believe the time is here.

Quote of the day:

“I would rather walk with God in the dark than go alone in the light.”
~ Unknown

Verses:

Blessed are all those who put their trust in Him.
Psalm 2:12

In God I have put my trust, I shall not be afraid.
Psalm 56:11

I thought I would just add my morning post to the bottom of yesterday's. Since it didn't actually post until today. I'm not sure what was up with the website the last few days.

As you can tell from the time that it posted I didn't get much sleep last night. I just couldn't go to sleep and stay that way. I feel like I worked hard all night trying to sleep. No reason why I shouldn't have been able to rest.

But today is a new day. Plus, it's chemo day. I am ready to go already.
I will post more this afternoon.

Tuesday, October 18, 2005 8:55 AM CDT

I actually started this post yesterday morning. But then I had to leave for 2 doctors appointments. One I knew about. One I was about to find out about. I had to go because the staph infection in my toe wasn’t getting any better. Talk about a scared little girl, that was me. Surgeries, no problem for me. But this toe issue was bringing me down.

So anyway, Bennie and I went to see the 2nd doctor, podiatrist. Now that’s a doctor that I would have never guessed I would have to see. I won’t give any graphic details. The shots were the worst part of it. Today I’m hobbling around. The feeling is coming back in my toe and it’s just a little achy.

Like I said I had tried to post yesterday afternoon. But the website was down. Then I lost my post. So I just had to start over this morning.

Well, chemo is back on for this week. As long as I don’t get ill again. Oh, and I have my CT scan a week from yesterday to check on the tumors. Praying for shrinkage.

This morning I am so thankful for Bennie. He is a rock. Plus, he’s had to handle some pretty long days because of me. Days in the clinic (waiting for a room) and days in the hospital, chemo days, and so on. These are all long, tiring days. But he’s a trooper and keeps me laughing through it all.

I’m very tired this morning. Can’t seem to get my thoughts together. So I will stop here for now. Maybe later I will post again. I hope you all have a marvelous day! Please leave a note on my guest book to let me know you’ve been by.

Quote of the day:

“I do not pray for success, I ask for faithfulness.”
~ Unknown

Verse of the day:

Your unfailing love will last forever. Your faithfulness is as enduring as the heavens.
Psalm 89:2

Friday, October 14, 2005 1:09 PM CDT

I’m back home again!

Yesterday was a rough day. I thought I was going to have to die to feel any better. But thankfully that didn’t happen and I am better today. I guess I just needed a little “tune up”. I consider myself very blessed to have made it since March without being admitted. I think this time it was a combination of things; gastrointestinal virus and small bowel blockage. I am so thankful the blockage corrected itself without surgery.

I just can’t even tell you how deathly sick I was yesterday. Poor Bennie feels horrible because he has been feeling sick with this virus for about a week. But he didn’t ever get as sick as I did. He says the next time he is feeling sick he is going to sleep upstairs in hopes that he doesn’t get me sick.

I’m so very thankful to be feeling better and be back home. But I am drained. I will post more after I rest for a bit. Thank you so much for all of your prayers. Those prayers were definitely answered.

Quote of the day:

“The flower that follows the sun does so even on cloudy days.”
~ Robert Leighton

This quote means so much to me. Especially after yesterday, when all I could do was follow the SON.

Verse of the day:

“My grace is sufficient for you, for My strength is made perfect in weakness.”
2 Corinthians 12:9

I feel His grace today and His strength was definitely perfect yesterday.

Please, please, leave me a note on my guest book. It would brighten my day more than you know. If you aren’t comfortable leaving on the guest book then feel free to email me crowe725@aol.com

Monday, October 10, 2005 7:19 PM CDT

I have news about Diva. She had to go in this afternoon so the doctor could try to retrieve the kidney stone and place a stent in until Friday. But when they scoped the bladder, ureter, and kidney they couldn’t find a stone. The doctor believes she passed it during the night. Her left kidney is inflamed from the stone. So she has to take all kinds of meds. But like she said, ‘It should be easier sailing now.” Please still pray for my sweet mother, Diva.

Zach and I spent the morning with my Butterfly Friend. We got to meet her middle daughter and youngest grandchild. They are the nicest people. I really enjoy spending time with her.

Well, tomorrow is my treat…remember? Getting my hair cut. I’m so thankful and so excited. Maybe I’ll get Bennie to take a picture so I can pose the new ‘do.

I really don’t have much else to post tonight. Same things…very, very tired. Oh something else I am thankful for though is that I only have to go to Vanderbilt once this week. Just for my chemo. Yea!!!! Last week’s 4 out of 5 days was enough to last me…ha ha.

Quote of the day:

“It ought to be as habitual to us to thank as to ask.”
~ Charles Spurgeon

Verse:

Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:18

Sunday, October 9, 2005 1:44 PM CDT

HAPPY BIRTHDAY DIVA!!!!
I LOVE YOU!!!!

Please pray for my mother, Diva. She has a kidney stone lodged in her ureter. She’s in a lot of pain. The doctor said she could pass it in a day or it could take a week. It breaks my heart that she is in so much pain and there is nothing I can do. But we can all band together and pray.

Today is Sunday, my favorite day. I went to ss this morning. But I was too tired to stay through church. Right now the best thing for me is to do a little bit, rest, do a little bit, rest. That’s one of the tough parts about this chemo. It just zaps everything out of you.

Oh, I am so excited about this…..
Thomas and Leah are going to do a concert at my church next Sunday night, October 16th. If you can be there, I promise you will get such a huge blessing from it. For those of you that don’t know, I go to CRBC - Charlotte Road Baptist Church. I can hardly wait for next Sunday.

Right here I want to share something small I am so thankful for. I have an appointment to get my hair cut on Tuesday. The last time I had it cut 8 weeks ago, I was not sure if I would need another cut. But 6 weeks into chemo and my hair is hanging tight. So I am very thankful to be able to make an appointment to get my hair cut.

You know getting your haircut is a small thing. That is when it’s just routine, you don’t really think about it. But when you don’t know if you will have hair in the coming weeks, it becomes just a little bigger. I think it is just as important to be thankful for the small things as the big ones. Maybe more thankful. Because sometimes the small things get lost in the shuffle of life. What are you thankful for today?

Quote of the day:

“I wish you all the joy that you can wish.”
~ William Shakespeare

Verse of the day:

Give thanks to the Lord, for He is good; for His loving kindness is everlasting.
Psalm 118:1

**A note on my guest book from you would really brighten this cloudy day. Might even make the sun pop out. You never know.

Friday, October 7, 2005 4:15 PM CDT

I want to start this post out by saying, “Thank you. Thank you from the bottom of my heart for all of your notes and emails of encouragement. You just don’t know how much they mean to me.”

God has blessed me with a new friend, my Butterfly Friend. From the moment I met her I felt a special connection with her. Of course, we both love butterflies. So that is why I have nicknamed her my Butterfly Friend. I’m so glad I got to spend the morning with her.

Okay, I know you want to know about doctor appointments, chemo, and stuff like that. My first appointment yesterday with my arthritis doctor went smooth and quick. I had my bone density test. Since last year I have had just slight loss in bone density. But not enough to warrant adding another drug to my handful I take a day. That was good news!

That wasn’t the only good news for the day though. I ended up getting to see my oncologist yesterday (he’s the coolest). I have two stitches where they put my port in (left side of chest) that have become infected. That’s not good because infection there could cause me to have to have the port removed. Anyway, I saw the doctor. He gave me a ‘script for that and the staph infection I have in my poor toe. Talk about hurt…the pulse beat.

THE GOOD NEWS…..
My doctor looked at my CT scan and told us that it looks like the desmoids up top are shrinking. The scan didn’t go down quite far enough to know about the ones causing the most trouble. I have it in my mind that they are. I’m praying for shrinkage, pain relief, and energy.

My chemo day is always such a long, tiring day for me. Even though I have a short actual treatment. It’s all the stuff that has to be done before the treatment can start like; port accessed, labs drawn, pharmacy has to mix chemo (takes an hour just for that), fluids and pre-meds before chemo. Plus, yesterday they were running behind. My appointment was at 12:30. I finally had my treatment at 2:00.

Every week I have to admit I get a little nervous before I get there. More anxious, about having my port accessed. It’s residual from the bad first experience. But every week I put my Emla cream and cover it 2 hours before my appointment. It works like a charm, numbs that area wonderfully. It does so good that yesterday the nurse didn’t get the needle straight in so she had to jiggle it around to hit the back of the port. It was only a little uncomfortable for me. Had I not done the Emla cream I would have surely been in tears. I am so thankful for that cream.

Last night and this morning I have been so tired. It seems like each week after my treatment I get a little more tired. I guess that is what is to be expected though. It means the chemo is doing what it is created to do…destroy cells good or bad.
My labs….counts are down. Just another part of the treatment.

Okay so enough about doctors, appointments, needles, and so on. I want to tell you what I am thankful for today. I’m so thankful for the breath I have been given, my faith, God’s love and belief in me, my boys, my family, my friends, and I have to put my warm house on a chilly day like today.

Quote of the day:

“The weaker we feel, the harder we lean on God. And the harder we lean, the stronger we grow.”
~ A Pocketful of Promises for Women

Verse of the day:

He will give his people strength. He will bless them with peace.
Psalm 29:11

Wednesday, October 5, 2005 3:34 PM CDT

Today Queen and I went to my doctor’s appointment. Bennie has just started a new project so he thought it would be best for him to work today. Because tomorrow I have my bone density test and chemo. He goes with me to chemo.

But back to the appointment this morning. The doctor told me basically exactly what I was expecting. He recommended gallbladder surgery. Although he could not guarantee it would help with my pain. Plus, having surgery for me cares a whole list of complications. To do the surgery I would have to stop my chemo treatments so my counts would have a chance to come up. At this time I just don’t think that is very wise. I believe the desmoids are the toughest part of this battle right now. In my heart I feel it would just make things worse if I stopped and then had surgery. So, I will wait until it gets to be more than I can handle.

I wanted Queen to go with me for a handful of reasons. One, to be another set of ears. Two, in case I got too tired to drive home (which I did, thankfully she was there). Three, it’s just nice to have a friend with you period.

Some of you will be so proud of me. I have just gotten up from an hour long nap. That is so unlike me. But this chemo is wiping me out. When I get tired like that it’s just best to lay down for a little while. I feel a little better after my nap. That’s what I have to do these days; do a little bit, rest, do a little bit, rest.

I am so thankful that I am able to do that.

Today is such a beautiful day. The sun is shining. The birds are singing. And God has given us another day. I hope you all have a blessed day! My Soul Sister always tells me that. I love you girlfriend!

When I got the mail today I had the most wonderful surprise from a dear friend of Bennie and mine. She sent me the sweetest card (she sends me cards every week) plus, a book, “A Pocketful of Promises for Women”. It’s a wonderful book. I’m sure I will use a lot of quotes and scripture from this book.

Quote of the day:

“Jesus did not come to explain away suffering or remove it. He came to fill it with His presence.”
~ from “A Pocketful of Promises for Women”

Verse of the day:

Grace and peace to you from God our Father and the Lord Jesus Christ. I always thank God for you because of his grace given you in Christ Jesus.
1 Corinthians 1: 3 & 4

** A note on my guest book from you would really put some pep in my step….just a little funny, ha ha.

Tuesday, October 4, 2005 8:09 AM CDT

I have come to realize that tears are sometimes as important a part of the journey as prayers. Yesterday afternoon I heard the song “Fireflies” by Faith Hill for the first time. The words to the song really struck a chord with me. I know I don’t normally use this type of music in my post. But it just goes with it this time. Here are two of the choruses.

“Before you met me I was a fairy princess/ I caught frogs and called them prince/ And made myself a queen/ And before you knew me I’d traveled ’round the world/ And slept in castles/ And fell in love/ Because I was taught to dream”

“Cause I believe in fairy tales/ And dreamer’s dreams/ Like bed sheet sails/ And I believe in Peter Pan/ And miracles, anything I can to get by/ And fireflies”

When I heard the song the tears just started rolling down my cheeks. My tears were for the little girl who thought she was a princess and for the grown woman facing yet another surgery.

As a little girl I would have never dreamed my life to be what it is today. I know some of you will think, here she goes. She’s going to forget all that’s important. No, that’s not true. What I mean is, I would have never dreamed that I would be so surrounded and feel so loved, be so lifted in prayer, by my family and friends. Plus, on top of that I married my prince.
I am so thankful for this journey and His belief in me. With the Lord, all things are possible.

No doctors today!!!!!!!!! YEAH!!!!!!!!! Thank You Lord for this vacation day.

Quote of the day:

“Until we see what we are, we cannot take steps to become what we should be.”
~ Charlotte Perkins Gilman

Verse of the day:

You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.
Psalm 16:11

Monday, October 3, 2005 1:55 PM CDT

I didn’t post Saturday or Sunday. I didn’t go to church on Sunday. This weekend I was just a whipped puppy. Very little energy. That’s just part of the chemo. Although it’s not easy feeling so tired most of the time.

Well, I got my report faxed to me. Plus, the resident called to let me know they would be discussing my CT and case in a group meeting on Tuesday. So, on Wednesday when I see the doctor, they will tell me the game plan.

The things I can make out on the report is that I have gallstones and a thickening in the gallbladder. The radiologist recommended a gallbladder ultrasound. I had hoped to find out how the desmoids were doing. But the scan didn’t cover that part of my abdomen. So we will have to wait until the end of the month to know how these monsters are fairing with my chemo.

This morning I had my yearly (lower) scope with my surgeon. This requires me to go on clear liquids for a day or two before the appointment. I was not liking it or wanting to do it this time. Even thought about rescheduling the appointment. I didn’t. I also didn’t do “clears” for 2 days, more like 1 day. When the doctor came in this morning I told him we could do this some other time, wouldn’t hurt my feelings at all. I was joking. Answered prayer here…..He said that we would reschedule it for downstairs in 6 months so that he could use sedation. I know, I know, I have always had my scopes in the clinic. I’m not too proud to do it the easier way. I have to wait until after I have my gallbladder taken care of and schedule. Man, that just brightened my day a hundred times over.

Then Bennie called me to meet him for breakfast. He’s such a sweetheart. By that point I was pretty shaky from not having any solid food. So I was hoping this would take care of the “shakes”. Thankfully it did. I am feeling more like myself now.

Tomorrow is a free day for me…no appointments with doctors. But I make up for it the rest of the week. I have one on Wednesday, one on Thursday, plus chemo, and one on Friday. Now that’s doctor overload.

Thank you so much to all of you that have emailed me, left notes on my guest book, sent cards, and most importantly, prayed. Because of your faithfulness I can continue with a positive outlook on this journey.

Okay, I thought of something else to tell. My doctor today had 2 interns with him. So he did the whole “Pony Show” for them about me….”My Life As A Science Project”. He told them what I had and added that I had nailed every part of Gardner’s Syndrome (FAP). Now right here I will add, not an accomplishment to brag about. Just a little funny to hear that about me.

Quote of the day:

“Courage is very important. Like a muscle, it is strengthened by use.”
~ Ruth Gordon

Verse of the day:

Be strong and keep the faith for He has said, “I will never fail you or forsake you.”
Hebrews 13:5

Friday, September 30, 2005 12:35 AM CDT

We Live (chorus) by Superchick

We live we love We forgive and never give up Cuz the days we are given are gifts from above Today we remember to live and to love We live we love We forgive and never give up Cuz the days we are given are gifts from above Today we remember to live and to love

I love this chorus especially the part that goes, Cuz the days we are given are gifts from above/ Today we remember to live and to love

I saw the most beautiful “canvas” this morning on the way to Vanderbilt. It was very foggy this morning. The fog was so thick in areas that it actually made the view ahead of me look like a blank canvas. I could only see parts of the mountains through the fog. But I could tell it was going to be a beautiful day for us. I couldn’t wait to get finished with my CT so I could get back outside.

I guess I should tell you about the scan here. Try to keep things in order. Of course, I would rather post about how beautiful the clouds in the sky are than post about needles and contrast.

You know it’s bad when you can walk into Radiology at Vanderbilt and the ladies working there call you by name. Frequent flyer, as I always joke. You would think they would give me a punch card for the 10th scan free…ha ha.

I got called back to get my iv for the contrast. The guy that I think does the best was there this morning. He always gets my iv with the first stick and very little pain. This morning was different. The first stick didn’t work. Even though he tried to make it work, jiggling it around. I kind of knew when I felt the needle that it wasn’t going to work. How did I? I just did. It didn’t feel right, hurt more than usual. When he took the needle back out the place bled quite a bit (low counts will do that). He moved on to the other arm. This time it worked. I was really glad because the other arm was throbbing.

I got called in for my scan. This part is funny. The guy that called me back asked me if I was really 40. I told him yes. He replied that he wish he could look that young for in his 40s. He said that he gets asked for his AARP card instead of his driver’s license.

Anyway, right after I finished the scan I didn’t feel very good. Just not myself. Now you know I have had quite a few scans. Having a scan is not a big deal to me. I walked slowly to my car, all the way thinking, “Just make it to the car and you can rest when you get there.” Once I got in my car I decided I could make it home. I just needed some food because I hadn’t eaten this morning. Remember at 6:40 I had to start drinking my contrast (yuck). I wasn’t hungry for breakfast after drinking that. So I picked up something for me to eat and drove on home. Now I am in the “Waiting Patiently” mode, waiting to hear about my scan.

When I got back outside (after my scan), I looked to see how He had finished the canvas. There was (is) a crispness to the air. The sky is the most beautiful shade of blue. Kind of reminds me of the sky in Hawaii. But then again, Bennie says that I can always find something in every day that makes me think about Hawaii.

Well, when I know something about my scan I will post again. If not I will post tomorrow. Go out and enjoy some of this wonderful day.

Quote of the day:

“Keep your face to the sunshine and you cannot see the shadow.”
~ Helen Keller

Verse of the day:

be confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.
Philippians 1:6

Wednesday, September 28, 2005 2:28 PM CDT

It’s been a busy day so far.

Guess what?

I don’t have to wait 4 more weeks to know if this chemo is doing the job. I’m having a CT scan done on Friday (the soonest I could get in). Of course, I’m having it to check my right kidney, gallbladder, and pancreas. I really like the doctor we saw today. He was very thorough. He wants to do the CT and some blood work before jumping into another surgery with me. He said that people talk about gallbladder surgery like it’s nothing at all. He says that it is a major surgery. But for me it would be very serious and not without it’s own number of complications. So, Bennie and I feel good about doing these tests before plunging into another surgery.

Tomorrow is #5 (chemo). So far so good with regard to my hair. It seems to be hanging in there. Or should I say, hanging on there.

Sorry this is such a short post. But I received a text message from Zach asking me to pick him up from school. He said that his legs are hurting him. He has trouble with his arches and knees. He wants to go see his Godfather, who just happens to be the best chiropractor around.

**I changed the pictures. Check them out.

Quote of the day:

“Gratitude is our most direct line to God and the angels. If we take the time, no matter how crazy and troubled we feel, we can find something to be thankful for.”
~ Terry Lynn Taylor

Verse:

We will shout for joy when you are victorious and will lift up your banners in the name of the our Lord. May the Lord grant all your requests.
Psalm 20:5

Tuesday, September 27, 2005 1:23 PM CDT

You’ll never guess what I have been doing this afternoon. Some of you have told me over and over again that I needed to do this. So now I am. I am getting my journal together to send it to some publishing companies. If they make a book out of it, it would really be a dream come true. I have prayed about it. The most important thing is that God be glorified in my journey. Because without Him I would not still be here.

Tomorrow I go to see my gallbladder doctor. Thursday, of course, is the next round of chemo. Please pray that my treatment goes smoother than last week (in regard to time). Last week we were there from 11:45 until 4:00. That wears a girl out, you know.

Well, the results are in…
The doctor, nurse, and I all agree. Zach is full of it! Plus, he’s not lacking in the area of self-esteem. He had the doctor and nurse rolling.

Everything else about his physical went as usual. Of course, Zach had to ask him how tall he thought he would get. His doctor told him that is hard to tell.

A note or email from you would surely make the sun shine even brighter here in KS.

Quote of the day:

“A strong positive mental attitude will create more miracles than any drug.”
~ Patricia Neal

Verse:

Jesus looked at them and said, “With man this is impossible, but not with God; all things are possible with God.
Mark 10:27

Monday, September 26, 2005 8:25 AM CDT

Good gracious (as my Granny use to say) this chemo is really wearing me out. Yesterday morning I only made it for church. After church we had dinner with my Sista-girl and her hubby. Then I came home and slept for a couple of hours. That is so not like me. I really wanted to go to church last night. But I knew I didn’t have the energy.

I’ve always been a pretty tough gal when it comes to my medical stuff. So being so tired is hard to handle. Never in my life have I felt this kind of tired. It’s fall asleep, sitting up, in my chair kind of tired. It makes your bones ache and bending down makes you dizzy. But I keep telling myself, “It’s only for a season.” To shrink these tumors will make all of this worth it.

Today I have to go to the doctor……
Not for me though. Zach has his sports physical today. This is always a kind of fun time. His pediatrician is so cool. Zach loves to see his charts and do the eye test. So, I'll let you know how our boy is doing.

Speaking of our (my) boy, he has kept me laughing all weekend. He would do lines from different movies. Maybe that’s why I am so tired……too much laughing. Just kidding.

I hope to post more later this afternoon.

Quote of the day:

“Be not afraid of life. Believe that life is worth living, and your belief will help create the fact.”
~ William James

Verse:

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Romans 15:13

Today’s verse is also on my guest book because my cousin (best friend from childhood) left it for me. Thank you and I love you. Lets all get together soon.

Shoe buddy, I came by to see you at Petco on Saturday. But didn't see you outside. Miss you. Love ya.

Saturday, September 24, 2005 4:21 PM CDT

FFH \ One Of These Days

Chorus:
One of these days
Gonna see the hand that took the nails for me
One of these days
Gonna hold the key to the mansion built for me
One of these days
Gonna walk the streets of gold that were paved for me
One of these days
I'm gonna see my Savior face to face
One of these days

This is a beautiful song. I get a lot of comfort from music. That’s why I share all of these songs with you. They have really helped me.

I have become a big FFH fan. Every song I have ever heard from them really touches my heart. Their music and Thomas & Leah’s music are such a comfort and strength to my soul.

I hope you will take time to truly read the lyrics to the above song. If you have a chance listen to it. It’s wonderful.

Not much else to tell today. Other than this week’s treatment has really kicked my tail. But, still, I am thankful, so thankful, that I haven’t been throw up sick. That is a true blessing.

I hope you all have a marvelous weekend. Tomorrow is my favorite day.

Quote of the day:

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.”
~ Eleanor Roosevelt

Verse:

How lovely is your dwelling place, O Lord Almighty!
Psalm 84:1

Friday, September 23, 2005 8:38 AM CDT

You never know…..

Sometimes the people we say we “know”, we actually know little more than their name, maybe if they are married or not. If they have children. Where they work.

But that is just the outside part of a person’s life. You never know what they are having to deal with. Yesterday I found out that about a person I have just gotten to “know”. I knew he was married and had no children. But yesterday I found out more to the story. His wife is 6 months older than me. She has been ill for 16 years with some type of brain tumor. That explained so many things; like no children, and her having bad falls. My respect increased 10 fold yesterday for this person. His love for his wife and the way he talks about taking care of her really touched my heart. It hurt my heart though to hear about the struggles that they are dealing with. There are so many people that tell Bennie and me, “I don’t see how you do it.” My thoughts are, “I’m going to be just fine. This is just for a season.”

So what I am trying to ask of you….yes, asking you to do something else for me. But I promise it will enrich your life. Really get to know that person that works down the hall from you. Walk to the other side of the sanctuary on Sunday morning and talk to someone, give them a hug. Do you know your neighbors? You could make a big difference in their life. So don’t cheat them out of “knowing” you and your family.

I know you have been waiting to hear about my doctor appointment and treatment yesterday. By the time I made it back home (5:00 - we had been there since 11:45!) I was exhausted.

Yesterday was long for a number of reasons; had to see the dr., labs drawn, and treatment. The nurses there are so good to me. I was so tired while I was waiting for the pharmacy to get my chemo ready that I curled up in my chair. So they brought me warmed socks, warm blanket, and a pillow. You know I am always cold or chilled.

Let me tell you I was toasty! I did some dozing while Bennie and I waited and waited.

I have to admit that right before I had my port accessed yesterday I got a little scared. Scared that the cream wouldn’t work as well as last week. Plus, the nurse that stuck me the first time was the one that was going to stick me yesterday. You know that first experience was pretty traumatic for me. I said a prayer and my strength verse. But I almost came out of the chair when she started to stick me with no freezy spray. She said with the Emla cream I didn’t need it. But I told her that the nurse had used it last week. She just told me I would be fine and stuck me. She was right. Thank you Lord!

My labs came back and my counts are falling. But the doctor already knew that by listening to my heart (have a murmur now) and looking at my fingernails (no color to the nail beds - white).

He said that he was planning on a 6 month cycle with this chemo. Then I would have a short break and back again. I’ve now had 4 treatments. In 4 weeks I will have a CT scan to determine how the chemo is affecting the tumors. This is going to do the trick. I know it.

I don’t feel very good today. That’s to be expected the day after. But the sun is peeking through the trees in my backyard. It’s going to be a gorgeous day! I hope you have a wonderful weekend.

Quote of the day:

“Blessed are they who have the gift of making friends, for it is one of God’s greatest gifts.”
~ Unknown (one of my Infra buddies sent it to me. Thank you.)

Verse:

I will praise you, O Lord my God, with all of my heart; I will glorify your name forever.
Psalm 86:12

Click over to the Guest Book

Thursday, September 22, 2005 6:17 AM CDT

Where You Are - FFH
music by Michael Boggs & Daniel McFarland

In this quiet place again
I can hear you on the wind
Whispering to me

In this quiet place again
I have found a Friend
Who understands me

Where You are is where I want to be
In Your arms You will comfort me
Far away from everything I used to be
You know I have come so far
To be where You are

In this quiet place again
You’re speaking to my heart
And I can know Your will

In this quiet place again
You tell me from the start
Follow and I will

First I have to give a “shout out” to our friend Daniel and his wife Christy. We miss you guys.

The words and music to this song have been like a warm blanket wrapped around me. This song is on the City On A Hill cd.

As I was listening to this song (Many times in the last few days) I thought about “I have found a Friend”. It made me think about being kids and saying so & so is my best friend. When all along we have all had the very same best Friend. This best Friend never lets us down, is always there and has time to listen (even when we whine on and on), loves us like there is no tomorrow, and thinks we are precious. WOW. Now that is some kind of Friend and we all share Him. What an absolute blessing and comfort.

My Friend has been walking close with me the last few days. It’s been a little rocky as far as how I am feeling. I actually almost called Bennie yesterday to take me to Vanderbilt. I was feeling so bad. But I just kept telling myself, “You can hang on until tomorrow. You have an appointment then. Just hang on.”

Well, as you can tell, I hung in there. It’s Thursday, “Chemo Day”. Today I see my oncologist so we can talk about how I am handling the treatment. I will post more later.
It’s kind of early, going to stop here for now.

Quote of the day:

“When you live in the light of unfolding miracles, there is always a future, always a hope!”
~ Unknown (given to me by Mr. B. - thank you.)

Verse:

Your love, O Lord, reaches to the heavens. Your faithfulness to the skies.
Psalm 36:5

Tuesday, September 20, 2005 3:03 PM CDT

Kutless - Strong Tower Lyrics

When I wander through the desert
And I'm longing for my home
All my dreams have gone astray
When I'm stranded in the valley
And I'm tired and all alone
It seems like I've lost my way

I go running to Your mountain
Where your mercy sets me free

[chorus]
You are my strong tower
Shelter over me
Beautiful and mighty
Everlasting King
You are my strong tower
Fortress when I'm weak
Your name is true and holy
And Your face is all I seek

In the middle of my darkness
In the midst of all my fear
You're my refuge and my hope
When the storm of life is raging
And the thunder's all I hear
You speak softly to my soul

I am really loving this song right now. Bennie burned me a cd that has this song on it. I can do some mighty praising to this.

You is my strong tower
Shelter over me
Beautiful and mighty
Everlasting King
You is my strong tower
Fortress when I’m weak
Your name is true and holy
And Your face is all I seek

I just love it.

My hope is that He is your strong tower. With Him, as our strong tower we can accomplish wonderful things. He is my strength for every day. Thank you Lord for Your belief in me.

I’ve got to give a shout out to my girlfriend, #15. Today is her birthday. Happy Birthday! I love you!

Know how to brighten my day? Doesn’t cost a thing. Just leave me a note on my guest book or send me an email.

Quote of the day:

“God is not moved or impressed with our worship until our hearts are moved and impressed by Him.”
~ Kelly Sparks

Verse:

I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”
Psalm 91:2

Monday, September 19, 2005 4:55 PM CDT

Thankful Lord, so very thankful. Yes, for every blessing and day that He gives me. My biggest blessing right now is that He took the fear away from me about Thursdays (having my port accessed). No more crying about it for me. You just don’t know what a relieve that is.

I’m still staying pretty tired most of the time. But that is to be expected because of the chemo (my counts are down). So I have no choice but to nap when I have a chance.

On Thursday I have my 4th chemo treatment and see the doctor to assess how I am handling it.

So far, so good, with my hair. It’s still hanging on my head. I think the next week or two will tell the tale of if it is going to fall out or not. If it does, it does. It’s just hair. I like to wear hats anyway. Just an excuse to buy a new one.

Okay, some of you have emailed asking to post a level since I haven’t in a while. Today’s level has bounced between a 4 and 5. That’s pretty average right now for me.

Well, I don’t really have anything else to post about for now.

Click over to my guest book and leave me a quick note. You know how much it brightens my day. An email is cool too.

Quote of the day:

Character may be manifested in the great moments, but it is made in the small ones.
~ Phillips Brooks

Verses:

I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, the Maker of heaven and earth.
Psalm 121:1 & 2

Saturday, September 17, 2005 10:25 AM CDT

You continue to amaze and humble me with the way you lift me up everyday. There are not adequate words to thank you for your wonderful notes and emails, never-ending prayers, precious friendships, and love.

You know some people ask me why I don’t ask why me. How can I, when I am so sure of this journey. I have a center calm there is always there, even in the times when I am scared. I know it is from God. I know He is in control of this. I’m thankful for His belief in me.

Yesterday……well, I spent half the day cat napping. That is so not me. I have never been one to nap during the day. So for me to spend half a day napping tells you how exhausted this chemo is making me. But I’ll take that gladly everyday. I’m just so thankful that it hasn’t made me throw up sick. That is the one thing I prayed about. Tiredness, you can rest. Hair, will grow back. That’s all just stuff.

Today….still very tired. But thankful for the day. Plus, tomorrow is Sunday. My favorite day. We have a church picnic after the service tomorrow. That’s always a lot of fun. Okay, so here is my plug…..if you don’t have a church family, find one. If you don’t have one you are cheating yourself out of some special relationships and a strength to weather the storms in life.

Quote of the day:

It is not what you are given in life, but what you choose to do with it.
~ Unknown

Verse:

Whatever I do, whether in word or in deed, I will do all in the name of the Lord Jesus, giving thanks to God the Father through Him.
Colossians 3:17

Thursday, September 15, 2005 4:58 PM CDT

If You Want Me To
Ginny Owens

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to

This song is just so special to me. I truly feel each word of it.

I know you all have been on pins and needles waiting to see how today went. Me too. Thank you more than I can ever adequately express in words for all of your prayers. They were definitely answered today. The numbing cream along with the freezy spray did the trick. Now I won’t dread next week.

Now I am just worn out. Because it takes the whole day to do this. Anyway, in the coming week or two we will see if I hang on to my hair or not. But you know what I have to say about it? Hair grows back and I am so thankful that today went so much smoother.

Thank you for all of your responses in regard to my collection (books, magazines, cards, puzzles, games, VHS movies, and scarves). Some of you have asked where to send these to. Please send them to my home address: 1436 C. C. Road, Kingston Springs, TN 37082. Or if you live nearby I would be glad to pick them up. I truly appreciate you joining me in this ministry.
Today Diva and I took in movies, books, magazines, and scarves that we had. The nurses were so appreciative.

I know this is a short post. But I am tired.

Quote of the day:

“God didn’t promise day without pain, laughter without sorrow, sun without rain. But He did promise strength for the day, comfort for tears, and light for the way.”
~ Unknown

Verse:

Be strong in the Lord and in His mighty power.
Ephesians 6:10

Thursday, September 15, 2005 7:40 AM CDT

Good morning!

I just wanted to give you an update about Ambien. Bennie picked up my prescription yesterday and I took one last night at 9:30. I slept until 5:15 this morning!!!!!!!! That is the first time in 3 years. Plus, I didn’t have the bad dreams. So Ambien gets my vote. This is yet another answer to prayer.

Today’s chemo appointment is at 12:00. Yes, I am a little anxious. I’m trying not to thinking about the port accessing too much. At 11:00 I have to apply a thick layer of Emla cream over my port and cover it with plastic. This is suppose to numb the skin. Hopefully this will be another answer to prayer.

Remember yesterday I ask for your help with books, magazines, games, cards, and puzzles? Today I have additions to the list; VHS tapes and scarves. I’m just trying to help you clear out your closets…ha ha. No, but really, all of these items will be greatly appreciated by all of us that have to spend time at the Cancer Center.

I will post after my treatment to let you know how things went. I hope you have a wonderful day!

Quote of the day:

“A life in thankfulness releases the glory of God.”
~ Bengt Sundberg

Verse:

I will extol the Lord at all times; his praise will always be on my lips.
Psalm 34:1

Wednesday, September 14, 2005 8:48 AM CDT

I Need Your Help.

Yes, today I am asking for your help with something I feel very moved to do. Every week when I go for my chemo treatments I see all the different people in there going through their treatments. Some people are there for hours and hours, longer than me. There at the Cancer Center they have bookcases for books and magazines for the patients to take with them and return when they are finished. I checked out both bookcases and let me tell you it only took a minute. Because there were very few books to look out.

So this is where I ask for your help. I am asking for any books and/or magazines that you have already read and would like to pass on. These people would appreciate your kindness. While you are collecting your books and magazines, if you happen to have any puzzles, games, or cards you would like to pass on those are much needed also. These are just a few things to occupy the time while receiving a treatment. Thank you so much for your giving hearts.

Please just send me an email to let me know if you would like to give any of the items.

Well, today I can tell you the difference for me with and without Ambien (?). As you all know for as long as this has been going on I have had trouble sleeping. For a number of reasons; pain, pouch issues, and so on. Since starting chemo I have started having bad dreams, nothing horrible, just stuff that worries. On a usual night I go to bed about 10:00. I sleep for what I always feel is hours, wake up because of one of the issues, only to find out that it is just 11:30! That is how my night goes. I sleep for an hour or two and then I’m up, sometimes for a while. As you can imagine it is really wearing me out, especially now on this new chemo. Anyway, a couple of nights ago my sister-in-love gave me an Ambien to try. I don’t normally take prescription medicine from people. I don’t even like to take my own, much less take someone else’s. But she assured me it would just help me sleep. So I broke the pill in half and took half. I was amazed. I went to bed at 10:00 and slept until 3:00 before I woke up the first time. The Ambien must have worn off by then because from that point on I was up and down. The next night the same thing. So my doctor is suppose to call me a prescription in. I’m looking so forward to a full night’s sleep.

I hope you all have a beautiful day. Tomorrow is my next chemo treatment. My appointment is at 12:00. Please say a prayer for strength and also the port access to be easier.

Remember: books, magazines, puzzles, games, and cards.

Want to know how you can brighten my day? Leave me a note on my guest book or send me an email.

Quote of the day:

“Never dwell on the tomorrow; remember, that it’s God’s and not ours.”
~ Edward B. Pusey

Verse:

Never worry about anything. But in every situation let God know what you need in prayers and requests while giving thanks. Then God’s peace, which goes beyond anything we can imagine, will guard your thoughts and emotions through Christ Jesus.
Philippians 4:6 & 7

Monday, September 12, 2005 4:17 PM CDT

If you wonder sometimes if God answers prayer just come here to my journal and you will probably read where He has answered something that day. This is an example.

Just a couple of nights ago I woke up (one of my many times a night) at 2:00. I sat right here at this desk, and cried my heart out to God. I cried and prayed for an hour. I admitted how afraid I was about the next treatment. I asked for Him to help me be able to face it.

The next day my sister-in-love gave me some Emla cream. It’s a special numbing cream for the top of the skin. Thank you and I love you so much Sista-girl. We are also checking into me getting a shot of lidocaine to numb under the surface. Today I have such a calm assurance that Thursday will be okay. Thank you God for that blessing. Thank you to each of you for lifting me up in your prayers. Together our prayers make a difference.

This morning was another early day at my “Second Home”. I had to be there at 8:00 for the next level test for my adrenal gland. For this test I don’t take my hydrocortisone that morning. They draw blood to get a baseline of my cortisol. Then they inject something into my arm. I had to wait 30 minutes. Then they drew blood again. Waited another 30 minutes and had blood drawn again. This was to test the recovery of “Sleeping Beauty”.

The results are in. “Sleeping Beauty” doesn’t have the recovery that I need just yet. So we will repeat this test in 3 months. No, this isn’t disappointing to me because I am so thankful my levels jumped to 11.2! The rest will come in God’s time. The perfect time.

I know this is a short post after a few days of nothing. Since Friday I have been so extremely tired. I don’t really have the energy for much at all. My boys have been and are so good to me.

I would really love to get a note on my guest book or an email from you. It would so brighten my day. You are the best!

Quote of the day:

“Faith is the conviction that God knows more than we do about this life and He will get us through it.”
~ Max Lucado

Verse:

This is an easy thing in the eyes of the Lord;
2 Kings 3:18

Friday, September 9, 2005 2:02 PM CDT

Well, the verdict is in…………

“Sleeping Beauty” is showing signs of possibly waking up. YEA!

I just got the call from my sweet KS nurse buddy. My cortisol level was 2.2 the last time it was checked. Today it was 11.2!!!!!!

So I have to go in on Monday for a special test. The doctor said that I am not out of the woods yet. But I am so excited about this news I had to share it with you.

Isn’t God wonderful? Yes. He gives me strength for the day (and a smile).

I’ll post more later when I have more time to put my thoughts together. Just had to go ahead and let you know the fabulous news.

Quote of the day:

“Those who have faith need no explanation; for those who have no faith, no explanation is possible.”
~ Unknown

Verse:

The Lord is good to all; and His tender mercies are over all His works.
Psalm 145:9

Thursday, September 8, 2005 8:19 PM CDT

* A Walk In The Day Of A Chemo Treatment

* Now please know, everyone’s experience is unique. This is just my experience today.

“I don’t like this game. I don’t want to play anymore. I just want to go home.”

This is what I say to Bennie, my mother, or dad whenever things have gotten almost more than I could handle. When I say that, they know I’m having a tough time of it.

I was a little nervous on the way to chemo. This would be the first time the nurse would access my port. The whole point of having a port is so you don’t wear out your veins and also so you only have to be stuck once. Well, today that wasn’t the case for me. I still had some swelling from having the port placed. So it took two sticks in the chest! The first one was with a ¾ inch needle. Then the nurse did some jiggling try to get it to work. Let me tell you that didn’t feel too good at all. I’m still pretty sore there. Then she pulled that needle out. She told me that she would have to use a one inch needle. I was trying to be a big girl, thought I had my “Big Girl” shoes on. When she shoved that one inch needle into my chest I can’t tell you how bad it hurt. I had tears in my eyes. As soon as the nurse left the room I said the quote from above to Bennie. I guess I just didn’t realize that today was going to require “Big Girl” shoes, “Big Girl” panties….no the whole “Big Girl” outfit. I’m a pretty tough gal. But that just about got me today. I am so definitely NOT looking forward to my appointment next Thursday.

I told Bennie it was going take me a week to forget today. If I had to go right back tomorrow I honestly don’t think I could make myself. In fact, I told my parents if it hurt as bad next week I just didn’t know if I wanted to keep doing this.

So, I will stop complaining and whining here and ask for you to join me in steady prayer. We all know who is trying to tear me down and make me lose my faith. That won’t happen. I am praying that God takes all of these fears away from me. I don’t have the time or energy to waste on them.

Thank you for all of your prayers, love, and support. Your notes on my guest book and emails really brighten my day. I could really use them today after a day like today.

I will end today’s post with my last thought……He is forever faithful.

Quote of the day:

“God doesn’t want us to know that He is faithful just because the Bible says so, but He wants to show Himself faithful in our lives.”
~ Robert Ekh

Verse:

I can do everything through him that gives me strength.
Philippians 4:13

Thursday, September 8, 2005 7:17 AM CDT

I just wanted to let you know I will be posting this afternoon, after I get back from my chemo treatment.

I hope you all have a blessed morning!

Quote of the day:

“It’s not how long you live. It’s how you live.”
~ Vanessa Redgrave

Verse:

We must also consider how to encourage each other to show love and to do good things.
Hebrews 10:24

Wednesday, September 7, 2005 9:15 AM CDT

Good morning!

There were no words yesterday.

I have been monitoring how I am feeling because the last 3 days have been tough ones. A few more side effects that I am having to deal with; thrush, constipation, nausea, rapid heartbeat (109- 120 at times), and my chest is so sore.

Since I’ve had the port placed and started chemo I am having trouble sleeping for more than one hour at a time at night. So it makes the night extremely long. I’m so tired most of the time that you would think I could sleep for hours and hours on end. But no such luck. Plus, on top of it all, I guess it’s the chemo that is doing this, I am having nightmares. All of this is really wearing on me. Please pray with me for peaceful sleep in the nights to come. My body needs some good rest.

My pain level in the last few days has ranged from 4 to 9. Right now I am a 5 and it’s early in the day.

Tomorrow is chemo session number 2. I am quite nervous about the nurse sticking me in the chest to draw blood and push the chemo. But a friend that has already been through this told me they have a spray they can put on before she sticks me.

On Friday it’s an “Early Morning Vandy” day. Yes, it’s time once again to check on Sleeping Beauty (my adrenal gland). I have to be there by 7:45 to have my blood drawn. Then I see my endocrinologist after. I hope and pray that SB is waking up.

I still say that I can handle all of this because God has blessed me. My only prayer was that the chemo wouldn’t make me throw up. I haven’t thrown up once…yea!!!! I can take all the rest. Plus, this is going to be what does the trick I just know it.

It looks like KS is in store for another beautiful day. I hope you have one in the area you are in. God bless you for sharing this journey with me. I am blessed by your friendship everyday.

Quote of the day:

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.”
~ Marcel Proust

Verse:

From the rising of the sun unto the going down of the same the Lord’s name is to be praised.
Psalm 113:3

Don’t forget to click over to my guest book.

Monday, September 5, 2005 10:22 AM CDT

HAPPY LABOR DAY!!!!

I wish you all a wonderful day full of fun and fellowship with your family and friends.

I’ll admit to you right here and now that last Thursday (1st iv chemo dose) I was a little bit scared. In fact, I joked to Bennie about leaving before they could shoot those poisons into my body. But I stayed there like a big girl. Because you have to move forward to make a difference. The thing I was most concerned about was getting sick after the treatment. We all know what happens to me when I get a simple stomach virus…hospital. I prayed and prayed that I wouldn’t get sick. So far, so good. The nausea hasn’t been more than I could handle (with a little help from Zofran). The toughest side effects so far for me are; fatigue (& I mean bone tired, fall asleep sitting up tired), constipation (serious side effect for me), shortness of breathe. I told Bennie that if this is what my chemo cycle is going to be like, I can handle it. But then again, of course I can handle it. Because God isn’t going to give me more than I can handle.

So, today I am so very thankful for the sunny, beautiful day. I’m thankful for the sun I can see streaming through the trees in my backyard. I so very thankful for my boys, family, and friends.

So stop reading this and go have a wonderful day. Enjoy the sunshine. Check out the “Canvas”.

Quote of the day:

Fear and faith can’t dwell in the same heart.
~ Bro. Bob Pearce

Verse:

The only thing that counts is faith expressing itself through love.
Galatians 5:6

Don’t forget to leave me a note on my guest book or send me an email. The minute you take to do that really brightens my day. Thank you so much!

Friday, September 2, 2005 8:11 AM CDT

Point Of Grace \ You Will Never Walk Alone

Along life's road
There will be sunshine and rain
Roses and thorns, laughter and pain
And 'cross the miles
You will face mountains so steep
Deserts so long and valleys so deep
Sometimes the Journey's gentle
Sometimes the cold winds blow
But I want you to remember
I want you to know

You will never walk alone
As long as you have faith
Jesus will be right beside you all the way
You may feel you're far from home
But home is where He is
And he'll be there down every road
You will never walk alone
The path will wind

And you will find wonders and fears
Labors of love and a few falling tears
Across the years
There will be some twists and turns
Mistakes to make and lessons to learn
Sometimes the journey's gentle
Sometimes the cold winds blow
But I want you to remember where ever you may

You will never walk alone
As long as you have faith
Jesus will be right beside you all the way
You may feel you’re far from home
But home is where He is
And He’ll be there down every road
You will never walk alone

Jesus Knows your joy, Jesus knows your need
He will go the distance with you faithfully

You will never walk alone
As long as you have faith
Jesus will be right beside you all the way
You may feel far from home
But home is where He is
And He’ll be there down every road
You will never walk alone

No, never
No, never

I wanted to share this song with you. It has been such a comfort to me in the past two days. How can we allow ourselves to fear when He is always there? I just can’t express in adequate words the depth of love I have felt and also the calm. God blessed me with this to help me get through the uncertainty of last two days. If you doubt God knows you or loves you, I promise you He knows and adores you!

So, I know you are wondering how yesterday went. How am I feeling today? What was chemo like? Any other questions feel free to ask. You know I am an open book.

Well, me and my port (new accessory) are still trying to get adjusted to each other. My chemo nurse said that it may take a week or two for the soreness to ease. It feels like someone stomped on my chest.

My nurse yesterday showed us what the port looked like. Bennie and I agreed that there is more to it than we thought there would be. Then she told me the tube would be removed after my treatment yesterday. From now on they will stick me in the port, which is underneath the skin of my chest! I know it’s a sure stick. But still it’s a stick every time and in the chest. I’m a little nervous about next week treatment and the “first stick”. Let me tell you it was a little weird yesterday having blood drawn from my chest. But you know what just makes me feel sick? When they flush my port. But even when I had a PICC line and had to flush it, it made me nauseous.

How long does it take to get your first chemo treatment? All day! We got there at 8:50 and didn’t leave until 2:00. But then we had to pick up my prescriptions. So it was 5:00 by the time we picked up Zach and got home. I was a whipped puppy.

My chemo is kind of cool. It’s just two syringes of chemo. They each have to be pushed over a five minute span. It takes longer for them to mix it (an hour) than to administer it. Plus, they will give me a bag of fluids with every treatment.

Today I am taking my “Rescue Therapy”. I have to take 3 pills every 6 hours for the next 24 hours. The pills do exactly that…rescue my healthy cells after the chemo. I have to wait 24 hours so the chemo can have time to attack.

So far this morning, so good. Just a touch nauseous. But I went ahead and took my Zofran to be on top of that.

Well, friends, it’s a brand new day. It’s going to be a beautiful day. I think I’ll get out to check out the “canvas”. I haven’t gotten to see much of it the last few days.

I hope you all have a wonderful, safe Labor Day weekend!

Quote of the day:

“Once you get in the habit of watching for miracles, it feels like the most natural thing in the world.”
~ Unknown

(Thank you PB - Infra buddy, for that quote. I love it.)

Verse:

This is an easy thing in the eyes of the Lord;
2 Kings 3:18

Infra gang I just had to tell you thank you for your continued ministry to me. Your creativeness with your cards is unbelievable. Thank you more than you can ever know.

Thursday, September 1, 2005 3:44 AM CDT

Yes, I know it’s too early in the morning for me to be up posting. But while I am let me tell you a little about tomorrow. That way later on when I do real post it won’t have to be quick so long. You know 2 days worth and they are busy, full days. Just remember if this entry is jumbled, I have had anesthesia today and I am on pain medication now.

Bennie and I got to admitting yesterday at 10 till 2. To make a really long story a little shorter, they didn’t take me back for my procedure until 5:35! It was scheduled for 4:00. So just think about that for a minute. I had to sit waiting and wondering when they were coming to wheel me in forever. Thankfully God let me be extremely tired so I did do a little dozing. I think if I could have just completely relaxed I could have done some powerful sleeping.

I have to back up a little. Once I got admitted they actually took me up to the surgery floor. I thought I was just going to where they put PICC lines in. So that made me a little nervous. Then the first nurse I had was one of the very few that have hurt me before. Last time she tired 4 times to start an iv on me before going to get someone else to try. Yesterday it only took once to get the iv in. But she decided on the side of my wrist. I told Bennie that I would be putting that spot on my “No More IV Spots” list. I’m not a cry baby. But that hurt. I mean tears running down my face hurt.

Let me fast forward. The procedure only took 30 minutes. By the time I woke up good enough, drank some, use the potty, and had my chest x-ray; I was released at 9:15. We made it home just a little after 10.

I am extremely sore. I’m not sure how the dressing will go for the next couple of days. Oh and I have to be back at my “Second Home” at 9:00 for my 1st appointment. Less than 12 hours after I left yesterday.

Anyway, I’m going to stop here for now. Don’t feel too good. But think about it; they cut open my chest, shoved something in it, and then sewed it back up. Yes, it is very sore.

Please pray that God will ease my discomfort. I am a little nervous about today’s treatment. I am praying that it doesn’t make me sick.

Now today, I could really use some notes on my guest book and emails to brighten my day.

Quote of the day:

“If you have built castles in the air, your work need not be lost; that is where they should be, now put foundations under them.”
~ Henry David Thoreau

Verse:

The Lord is good to those whose hope is in him, to the ones who seeks him;
Lamentations 3:25

Wednesday, August 31, 2005 9:32 AM CDT

Good morning!

I have just eaten my only meal for the day. Does that stun you? Make you wonder what is going on? I am having my port put in today to be prepared for chemo tomorrow. It is an out patient procedure. So I will be home this evening, barring any complications. I know some of you are asking what a port is? Where does it go? A port is placed generally in one side of the chest. From what I am told it’s hardly noticeable. I have had something similar years ago, a Hickman catheter. I need this port because I will be getting weekly treatments. The iv chemo is too toxic to take weekly by regular iv. The good thing about getting the port is that they can use it for my chemo and blood draws. So, hopefully no extra sticks while it’s in.

So, I know, you are wondering, am I nervous, scared, or what? A little nervous, yes, but only a little. At this point in all of this Vandy is like my second home. So it’s just another day. I’m not really scared. I just wish I could jump forward to this evening so I would be on the recovering side of the procedure.

Right here I have to praise my nurses. The nurses are the backbone and strength of all of your care. I have been blessed with wonderful, caring nurses. Over the course of all of this they have become my friends. I want to thank my KS nurse buddy this morning for her help and friendship. Thank you for all of your kind words.

I had to stop for a minute. Doorbell rang. The Fed-ex man was here. Bennie answered the door. As he was signing for the package I jokingly said that I hoped it was for me. Well, guess what? IT WAS!!!!!!!!!!!
I’m like a kid. I was so excited. But I didn’t know what I was in store for. It was the most beautiful collection of all of my birthday pictures set to Thomas’ music with wonderful graphics. I just finished watching it for the first time. The tears are still streaming down my face. I am blessed so richly by my beautiful family. My “Cuz” and her boyfriend worked really hard on this. Thank you so much for sharing your love and talent. I will treasure this disc always. I love you to pieces!! I hope, no I know, you are going to have a fantastic trip.

Well, I guess I better stop here for now. I do have to get a few things done before I head off for the “Second Home”. I pray that you all have a blessed day. Please remember to pray for the devastated people dealing with Katrina’s aftermath.

Quote of the day:

“If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one lonely person
Into happiness again
I shall not live in vain.”
~ Emily Dickinson

Verse:

Look to the Lord and his strength; seek his face always.
1 Chronicles 16:11

You want to know what you can do for me. Flood me with notes on my guest book and emails. That will be a wonderful surprise to come back home to. The sun is shining here in KS. But it could shine a little brighter………

Tuesday, August 30, 2005 9:07 AM CDT

Today my thoughts are of the devastation that Hurricane Katrina is leaving. My day to day pales in comparison to what these people are going through.

Please join me in prayer for everyone dealing with the after effects of the hurricane. Bless their hearts! My heart hurts for them.

Quote of the day:

“Do all the good you can,
By all the means you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can.”
~ John Wesley

Verses:

I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.

Saturday, August 27, 2005 11:08 PM CDT

Yesterday evening (Friday) I sat on my front porch steps and spent time just looking at the beautiful sky. As I watched the sky these thoughts came to me. When I first sat down the sky looked like a blank canvas, the palest blue. As I continued to watched the Artist colored a beautiful picture. I guess I like the sky so much because I see it as a piece of art. Also I find a calm serenity in it.
Did you take a moment (or maybe longer, I hope) today to just gaze into God’s masterpiece?

For the last week I thought I was starting iv chemo treatments this Monday. I thought Monday was the first. My first treatment will be on Thursday. I kind of feel like I am going into this blindly, but trusting. All I know about it is I will be getting methotrexate and vinblastine. No clue what so ever about anything else. The doctor will talk to Bennie and me about all of that on Thursday. The only other thing I do know is that he will be giving me a “Rescue Therapy Treatment” 24 hours after each of my chemo treatments.

I’m really trying to share everything with you; doctors, treatments and tests, day to day family stuff, and so on. The hardest is to open up and share my vulnerable side, how I am feeling. It’s hard to put words to all of it. As I sit here right now typing I know that I am in the calm before the storm.

So since I am preparing for the storm, I have to get some things done and taken care of before Thursday. Infra Gang, my “Bucksnort” buddies, Fairview girlfriends, Soul Sister it is my plan to see each of you before my first treatment. Because for right now I don’t have any idea how this will affect me. I am praying that it is the perfect combination. I will be continuing what I am taking now, along with the new stuff. My doctor said that since some of the tumors had responded to it.

Please pray that this will be exactly what I need. Also, please remember my boys.

Also, please leave me a note to brighten my day!

Quote of the day:

Faith is a force that is greater than knowledge or power or skill, and the darkest defeat turns to triumph if you trust in God’s wisdom and will. For faith is a mover of mountains - there’s nothing man cannot achieve if he has the courage to try it and then has the faith to believe.
~ Helen Steiner Rice

Verses:

But you, O Lord, be not far off; O my strength, come quickly to help me.
Psalm 22:19

Weeping may endure for a night, but joy cometh in the morning.
Psalm 30:5

Thursday, August 25, 2005 9:02 AM CDT

I have laid down the burden I have carried off and on for years. It’s so wonderful to know that I won’t ever pick it up again. I didn’t realize how tired it made me or how much joy it robbed from my life. This burden was the worry that Zach would have to live a life with FAP. Every mother wants their children to be healthy, close to perfect. So over the years, every time someone would comment how much he looks like me, I would quickly point out ways he was like his daddy. So the little nagging, unfinished feeling remained with me, even after we had the genetic test when he was 8.

But I am free now and it is so wonderful. Now anything is possible because my baby is okay. Life is good….no life is great!!!!!!!!!! Now every time someone comments how much Zach and I look alike I can just smile and know it’s okay.

Don’t forget to check out the clouds today…remember the canvas.

Quote of the day:

“It takes as much energy to wish as it does to plan.”
~ Eleanor Roosevelt

Verse:

Look to the Lord and his strength; seek his face always.
1 Chronicles 16:11

A note from you would surely brighten my day!

Wednesday, August 24, 2005 4:34 PM CDT

Did you look up into the sky today? I mean really look, not just a passing glance. That’s one of the things I do every single day. Because each day is new and different. The sky to me is one of the most magnificent canvases God has. From sunrise to sunset it’s a constantly changing work of art.
So, if you didn’t look up into the sky today, make a point to do it tomorrow

I am very tired but happy today. Praise God for our fantastic news yesterday! As I was saying my prayers last night, thanking God, tears rolled down my cheeks. I was so overwhelmed by the most wonderful feeling. I knew He was telling me, “I love you. I will take care of you.” Last night was probably the best night’s sleep I have had in years.

Quote of the day:

"Nothing under God’s control is ever out of control.
Chares Swindoll

Verse:

Wait for the Lord; be strong and take heart and wait for the Lord.
Psalm 27:14

Tuesday, August 23, 2005 9:43 PM CDT

GLORY BE TO GOD!!!!!!!!

We are back home and my prayers were answered. I was given the best gift today, knowing my baby is clear. What a wonderful day it is!

FAP stops with me!

Thank you so very much for lifting us up in prayer.

Zach has eaten a couple of times now since leaving the hospital. He’s well on his way to catching up. His first meal was Cracker Barrel; dumplings, mash potatoes, and green beans.

I’m just so thrilled I can’t hardly get my thoughts together.

Bennie, Zach, and I have all teased saying that we are glad to have that “behind” us now. Bad joke, I know. But it made us laugh at the time.

I have to commend the staff at the Children’s Hospital. I hope you never have the need to have your children there. But if you ever need a hospital I would strongly recommend this one. Hospitals have come a long way since when I was a child.

For those of you that have been reading my journal for a while you will know what I’m talking about when I mention “Glimpses & Blessings”. For those of you that have just recently started reading I will explain. Every so often God shows me what I call a “Glimpse”. The glimpse is always of someone that has some type of handicap, deformity, burn, etc. Today, while we were at Cracker Barrel, I saw two glimpses, one right after the other. The first was an older lady who’s face was covered in skin cancers. The second was an older man who had hooks for both of his hands. When I see people like this I know God is reminding me of how blessed I am. That’s were the “Blessing” part comes in. Plus, I always say a prayer of thanksgiving and blessings for that person or people. I have a great admiration for these people. Because they are living with some type of defect or deformity that cannot be hidden from the world. But they are still out there. Still out there, making a difference in my life without even knowing it.

It’s funny because most of the time when I get those “Glimpses & Blessings” I am feeling kind of pouty. But not today. I was so excited about our good news on Zach. Plus, I got two, one right after the other. I told Bennie God certainly had my attention.

Tonight I am so thankful for all the many blessings God has given me and my family.

Please leave me a note on my guest book or send me an email crowe725@aol.com. To those of you that have emailed me in the last couple of days, I will return your email, I promise. I’ve just had my hands full the last couple of days with Zach.

Quote of the day:

“When a friend believes in you, even the impossible seems possible.”
~ Unknown

Verse:

When times are good, be happy; but when times are bad, consider; God has made the one as well as the other.
Ecclesiastes 7:14

Tuesday, August 23, 2005 8:19 AM CDT

Good morning!

I know I just posted yesterday afternoon and some of you might not have read that yet. But if I don’t post some of this now it might be this evening before I get the chance again.

The house is quiet right now. Bennie has run off to get some details taken care of for a new project he is working on. Mr. “Hungry” Zach is still asleep. Let me tell you that boy is a hoot. We laughed so much last night that my stomach is hurting today.

The morning yesterday wasn’t so bad for him because he’s not a breakfast food eater, like his mama.

Oh I have to tell this, it’s too funny. I had to go to Bennie’s office yesterday morning. While I was there I called to see if Zach was awake yet. He asked me what exactly a suppository was. All he said was, “WHAT!” and hung up the phone. He was upset.

Well, by lunchtime he was a little irritable. By supper he was just plain hungry. The jell-o wasn’t getting it. The chicken broth wasn’t getting it. So he asked me to go get him some Chunky soup. I explained to him that he could only have the broth from it. No vegetables.

When we got back from the store I fix it for him, adding a little extra beef broth to it. He thought that was wonderful. The funny part is when I walked back in the kitchen a little later. I had left the soup on the stove. Zach was standing there with his hand to his mouth, chewing. He got the “Deer in headlights” look. He knew he had been caught. He pleaded, just one bite. Talk about hard, saying no to your hungry child. A the while he is saying he doesn’t understand why we are making him do this. I just told him that one day he would understand and know how much we love him.

Anyway, he promised me that he hadn’t swallowed any food. He asked if he could have crackers? Chips? Oatmeal? I told him he couldn’t have anything you have to chew.

After the soup deal, Bennie and I decided that Zach should probably sleep with me last night. Just in case he woke up during the night and the hungry bug got the best of him.

Well, we made it through the night. Now we are letting him sleep until we have to leave for the hospital. I told him that he can have whatever he wants to eat after this is over. I will be so glad to have this behind us. Late this afternoon we should be on our way home.

Some of you emailed asking. We will be on the third floor at the Children’s Hospital.

Thank you so much for your faithful, continued prayers for my family and me. We are forever blessed by your faithfulness.

Hopefully I will post again this evening to let you know how things went.

Today’s quote was sent to me by a wonderful, sweet friend, part of the Infra Gang. She said, “I saw this and thought of you.” What a awesome compliment. Thank you so much! Thank you for seeing that in me. It is truly how I feel.

Quote of the day:

“Let me not pray to be sheltered from dangers, but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it.”
~ Unknown

Verse:

The Lord will keep you from all harm - he will watch over your life;
Psalm 121:7

Monday, August 22, 2005 3:36 PM CDT

Good afternoon! I actually tried to post yesterday evening. But I hit a wrong key and lost the entire post. I was so frustrated that I had to just walk away. So now I’ll see if I can remember most of it.

You know no matter what we are going through the words to this song below hold true. They are such a strength and comfort to me. No matter what He is always with us. For that I am so thankful.

Avalon - You Were There Lyrics
I wonder how it must have felt
When David stood to face Goliath on a hill
I imagine that he shook with all his might
Until You took his hand, and held on tight

'Cause You were there, You were there
In the midst of danger's snare
You were there, You were there always
You were there when the hardest fight
Seemed so out of reach
Oh, You were there, You were always there
You were always there

So there he stood upon that hill
Abraham with knife in hand was poised to kill
But God in all his sovereignty had bigger plans
And just in time, You brought a lamb

'Cause You were there,
You were there
In the midst of the unclear
You were there, you were there always
You were there when obedience
Seemed to not make sense
You were there, You were always there
You were always there

So haven't I learned that my ways
Aren't as high as Yours are
And You alone keep the universe
From crumbling into dust
You are God and though we would
Not have understood You
There You were

Hanging blameless on a cross
You would rather die than leave us in the dark
Every moment, every planned coincidence
Just all makes sense
With Your last breath

You were there, You were there
During darkest hour
You were there, You were there always
You were the Victor and the King
You were the power in David's swing
You were the calm in Abraham
You are the God who understands
You are the strength when we have none
You are the living, Holy one
You were, You are and You will always be
the Risen Lamb of God

You were, You are and You will always be
The Risen Lamb of God

I know that He is here with Zach and me today. Blessed Zach’s heart, he is hungry. the clear liquid diet just isn’t doing the trick. I would gladly do this for him if only I could. At 4:00 he has to drink a bottle of magnesium citrate. He’s not looking forward to that or the 2 suppositories he has to do.

Diva, I am blessed to have you as my example of how to handle this. It amazes me even more today the strength you had to have to go through this and so much more with Dusty and me. I love you!

Tomorrow we have to be at the Children’s Hospital at 11:00. Zach’s procedure is scheduled for 1:00. We will probably be there most of the day. At the end of the day we will hopefully hear the wonderful news that Zach is clear. That is my prayer. I will take any surgery, any chemo, just let my baby be okay.

Okay so I mentioned chemo. Not sure what I put in the last post….chemo brain, you know. I start my iv chemo on September 1st. The doctor has prepared me that I will lose my hair. I believe I am alright. But the first strands haven’t started falling out yet. Bennie is just the sweetest thing. He said that he would shave his head if and when I lose all my hair. I told him not to because I wouldn’t want anyone else to go through that.

All I know is that “I’m Ready To Fly”.

Please leave me a note on my guest book or an email. It sure would brighten my day today.

Quote of the day:

“Discover your possibilities.”
~ Dr. Robert Schuller

Verses:

I give them eternal life, and they shall never perish; no one can snatch them out of my hand. My Father, who has given them to me, is greater than all, no one can snatch them out of my Father’s hand. I and the Father are one.
John 10:28-30

Friday, August 19, 2005 8:59 AM CDT

I know you have all been waiting to hear what the results were from my CT. The good news is that 3 of my tumors were stable, no noticeable growth. The not so good news is that the one on the right side that is giving me so much trouble grew.
So I will start my iv chemo on September 1st. I asked my doctor how likely it was that I would lose my hair. He said that there was a 50/50 chance, but most likely I would lose all of it. He told me when that happened he would write me a prescription for a cranial prosthetic…..wig. So I guess I just have to see what happens. The most important thing is to get these tumors to shrink. Because hair grows back. That’s a small thing.

Okay so this is the other part of my appointment. I got in trouble! I lost 2 lbs. At first the nurse and Bennie thought the scale showed me 6 lbs lighter. I marched myself back down to the scale and made Bennie weigh me again. I was right. I had only lost 2. But still my doctor wasn’t happy. He told me that he had some patients that could afford to lose 2 lbs. But that I didn’t have it to lose. I explained to him about how much of a chore eating has become for me. I eat on schedule. Yesterday morning I didn’t eat breakfast. I wasn’t hungry. I was just tired of eating because it was time. Plus, I feel so bad after I eat that it makes me wish I hadn’t eaten at all. Then the whole other issue of my small bowel not being able to function like it should. So he has prescribed Reglan for me to take 4 times a day. He said that it should help my system clear things out better. It actually helps the stomach by increasing the contractions to move the food through.

Of course I can’t leave there without blood work and a urine specimen. Fun, fun. I already knew before his nurse called me that I had a lot of blood in my urine. So he put me on Bactrim. The thing is that the stent is probably just playing out. I didn’t realize it until I looked at my calendar, but I have had this stent for almost 2 months. So far every one that I have had has only lasted that long. So I will have to move up my appointment with my urologist.

I know that with this next step I will most definitely need to have my “Big Girl” shoes on. I can tell you today that I am ready to get on with this. Because the sooner I start this, the sooner the tumors can shrink. But I know that there will be tough times once treatment starts. That doesn’t scare me though because I have all of you praying for me. Plus, when it gets too hard He will carry me for a while.

Thank you all more than you know for all of your emails, notes on my guest book, prayers, cards, call, and so on. You are a part of a huge ministry. Thank you for walking this journey with me. I am blessed!

Quote of the day:

“If you have a dream, give it a chance to happen.”
~ Rich DeVos

Verse:

Let us hold unswervingly to the hope we profess, for he who promised is faithful.
Hebrews 10:23

Wednesday, August 17, 2005 9:16 AM CDT

Goodness! I got an overwhelming response to yesterday’s post. When I sat down at the computer I wasn’t sure exactly what that post was going to be about. But as soon as the screen came on, the words were there.
Thank you to each of you that have left a note on my guest book or sent me an email to let me know how much my journal means to you. Your response is a precious gift to me. All of my posts are what is on my heart, pieces of Stephanie. Thank you for sharing this journey with me.

This morning I am waiting to hear from my oncologist’s nurse. I left a message for her about moving up my CT scan to this week. The reason is because my pain level in the last day and a half has increased. Last night I felt so bad that I almost asked Bennie to take me to the ER. But I kept on thinking just wait, you don’t want to spend the night in the ER.

I just got the call. My oncologist’s nurse is so nice. She got everything worked out. I am having my CT done this afternoon! So hopefully the doctor will be able to tell what is going on inside my abdomen. I am okay with whatever they tell me. I know that this might be the start of the tough chemo. But if that’s what it takes to shrink these bad boys then so be it. I can hang…I’m a pretty tough gal.

Well, this is a short post for today. But I have things to do before I head back to Vanderbilt once again. Wasn’t I just there yesterday?

Keep those notes on my guest book and emails coming. They really do brighten my day!

Quote of the day:

“He who is filled with love is filled with God himself.”
~ St Augustine

Verse:

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
Hebrews 4:16

Tuesday, August 16, 2005 10:10 AM CDT

Holy Fire burn away,
my desire for anything
that is not of you and is of me.
I want more of you and less of me.

Holy Fire burn away,
my desire for anything
that is not of you and is of me,
I want more of you and less of me, yeah.
Empty me,
Empty me, yeah,
Fill, won't you fill me,
with you, with you, yeah.

~ words to Empty Me by Jeremy Camp

Good morning! I believe I have shared a part of that song before. This morning it’s on my heart to share it again.

You know we are all guilty of living life and getting so caught up in stuff that sometimes we just have to get to a quiet place and ask God to empty all that worldly junk from our backs. We have a tendency to just pile it on higher and higher. Then we wonder why we feel the way we do. All we have to do is give it to God. He’s waiting right there, hoping you will turn to Him. Every so often I have to do a clean up job myself. I start to realize that I have collected a few things that I am trying to carry on this journey. I realize I have to give these things to God because they interfere with the journey.

Everyday we should be amazed. We are blessed beyond measure. Yesterday after the storm Zach showed me a rainbow. You know how much I love rainbows. When I saw it I was amazed because of it’s promise.

Everyday I try to appreciate even the smallest of blessings, sometimes things that we have a tendency to take for granted; the sun shining through the clouds (one of my favorites), the first snow, helping a friend, and even down to the silliest of things; the perfect shade of pink nail polish, Indian Princess shoes, and hot KK doughnuts.

I know, I know, I have already shared part of a song with you. But today is a double day. I felt drawn to share this entire song with you. So I could share how much it means to me. I mean I can do some powerful worshipping to this song. It rips me.
I think it’s a wonderful reminder to us that His nearness makes our lives better. What a beautiful reminder.

be near
by Shane Barnard

You are all
big and small
beautiful
and wonderful
to trust in grace through faith
but I'm asking to taste...

for dark is light to You
depths are height to You
far is near
but Lord, I need to hear from You

be near, oh God
be near, oh God of us
Your nearness is to us our good
be near, oh God
be near, oh God of us
Your nearness is to us our good, our good

Your fullness is mine
revelation divine
but, o, to taste
to know much more than a page
to feel Your embrace...

for dark is light to You
the depths are height to You
far is near, but Lord
i need to hear from You

be near, oh God
be near, oh God of us
Your nearness is to us our good
be near, oh God
be near, oh God of us
Your nearness is to us our good, our good

(psalms 73:28; 139)

All of this I share with you is just what is on my heart. Just pieces of Stephanie.

My sister-in-love just called and asked if I wanted to ride with her to Vanderbilt to pick up some prescriptions. She works at the Children’s Hospital. At first I thought she was joking. I asked her if she were kidding with me. I told her I didn’t really want to be anywhere close to that place. But she wasn’t. She just wanted someone to go with her and maybe do a couple of errands. How could I say no to that? Plus, I enjoy spending time with her. So this is the end of the post for now.
I hope you all have a fabulous day!!!!!

Don’t forget to leave me a note on my guest book.

Quote of the day:

Our prayers bring us into God’s presence.
~ Unknown

Verse:

But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds.
Psalm 73:28

Monday, August 15, 2005 9:53 AM CDT

If I could have closed my eyes, clicked my heels three times, and been home I would have. But I’m not Dorothy and it wasn’t Kansas I was trying to get back to. This morning I am SO happy to be home, in Tennessee.

I actually took my computer with me to be able to post while we were in Savannah. But the house we stayed in didn’t have a phone.

We, Bennie, Zach, me, Bennie’s 2 sisters and brother, all went to see Granny. She just turned 90 years old and is still a spitfire. All 4 of the kids hadn’t been to Savannah at the same time in about 10 years. We really enjoyed spending time with Granny. If you ask Zach what his favorite part of the trip he will tell you spending time with his Granny (Great-Granny).

Yesterday morning we got on the road at 6:30 am Nashville time to be able to be back in time for church last night. Last night the youth were leading the service so it was very important to Zach to be back in time for that. The service was beautiful. This group of teens is amazing. Their love and concern for each other is so evident. I am so happy Zach has that strength in his friends. That’s such a comfort.

Zach has his scope next Tuesday. So he will miss school on Monday and Tuesday. The reason he has to miss on Monday is to do the prep (yuck). I am praying that it all goes smoothly and Zach is clear.

I haven’t checked my calendar, but I don’t believe I have any appointments this week! I’m just 2 weeks away from my next CT scan and decision time about the added chemo. I’m going to get my hair cut today and I’ve been joking with Bennie that this could be the last haircut I need for a while.

I joke about that to try to keep it light. Because you know what? Up until this point it was just talk about the other chemo. Now I feel 90% sure we will add it, which means I will lose my hair. It kind of made me tear up a little. But hair grows back and I like to wear hats.

I have to tell you all what a amazing source of comfort, support, and love I get from each of you. I am so thankful, and blessed beyond measure, by you. God is so good to me every day. Thank you for walking this journey with me. It’s wonderful to have friends on the path.

The sun is shining so brightly outside my window. I hope you all have a wonderful Monday! I’m so happy to be back home!

If you have a moment, please leave me a note on my guest book or send me an email.

Quote of the day:

Don’t put limits on God with your limitations.
~ church sign in Savannah

Verse:

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28

Wednesday, August 10, 2005 8:23 AM CDT

“More”
by Matthew West

Take a look at the mountains
Stretching a mile high
Take a look at the ocean
Far as your eye can see
And think of Me

Take a look at the desert
Do you feel like a grain of sand?
I am with you wherever
Where you go is where I am

And I'm always thinking of you
Take a look around you
I'm spelling it out one by one

(Chorus)
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today
And tomorrow, I'll say it again and again
I love you more

Just a face in the city
Just a tear on a crowded street
But you are one in a million
And you belong to Me

And I want you to know
That I'm not letting go
Even when you come undone

(Chorus)
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today
And tomorrow, I'll say it again and again
I love you more

Shine for Me
Shine for Me
Shine on, shine on
Shine for Me

(Chorus)
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today
And tomorrow, I'll say it again and again
I love you more

I absolutely love this song. How wonderful those words are.
“You are mine, and you shine for me too.”
“But you are one in a million and you belong to Me.”
“And I want you to know that I’m not letting go even when you come undone.”
I mean you’ve got to feel better just reading those words. He means that for all of us. We are all one in a million, His special creation.

I’m pretty tired this morning. I was up until almost 2:00 this morning, pouch troubles. When the ole pouch decides to act up I know I’m in for a long night. It’s just best not to try to go to sleep until it works out.
Mornings are harder on me now since my adrenalectomy. So just imagine that and then only sleeping 4 hours. But wait, in that four hours still getting up twice! I’m not complaining…no, just telling. Believe me, I know how blessed I am to be here where I am now. Because I can look back over the last 2 ½ years and remember some really hard times, so tough all I could do was cry and pray. Times when I literally didn’t know if I would make it. But He carried me through and brought me to today. I give Him all the glory for where I am today. I am thankful and amazed that He believes so much in me.

I know this isn’t a very long post. But I am tired this morning remember. I hope you all have a wonderful day. Now before you go on with your day, if you would leave me a note on my guest book that would brighten my day. Thank you!

Quote of the day:

“Our greatest security comes from knowing the peace of God through prayer.”
~ Anonymous

Verse:

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10

Monday, August 8, 2005 9:04 AM CDT

Good Monday Morning!

School started this morning here in Cheatham county. Zach laughed this morning because I wanted to take his picture. I told him it was his last first day at middle school. He laughingly replied that next year it would be his first first day of high school and then so on. I told him I would be taking a picture of him then too.

He told me he was thinking last night about how this was his last year at the middle school. How he knew that high school would go fast and then all of his friends would be scattered; this friend would get a basketball scholarship, this one would get a football scholarship, this one would get a golf scholarship, and so on. He didn’t say anything about himself. So I asked him why not. He told me he wasn’t sure about himself. Of course I very quickly reminded him about how he has said for years that he was going to Duke. Then he shocked me. He looked at me and said that he didn’t know if he could be that far away from his mama. Talk about touching my heart. I hugged him and said that Duke had been his dream, not to give it up. If I had to, I would get an apartment in North Carolina to be closer to him while he was there.

I watched him as he walked away from the car this morning when I dropped him off. He has grown so much, become such a sweet young man. I am so thankful for him. He is my smile.

I know you were wondering where I was because I haven’t posted since Thursday. But the words just weren’t there. So a catch up now; pain level is on a roller coaster again, having trouble with the Baker’s cyst, and I have a staph infection in 2 fingers (not as bad as the one I had in Hawaii).

I don’t believe I have any appointments this week. So lets pray that I have a smooth week, no bumps in the road.

Bennie gave me a surprise last night. He made a hard copy of all my posts from last year and all of the ones from this year up until my birthday. He had Becky burn it to a disc. So I have it on disc also. He wants to show it to a friend of ours who has written a lot of books.

He called me downstairs to his office last night, said he had something to show me. Let me just go ahead and tell on myself. I had been acting like a brat. He had asked me earlier what was wrong. I told him I just didn’t know. But that I wanted to be mad. Talk about sounding 5 years old.
So anyway, back to him calling me downstairs. When I turned the corner I saw it, the stacks of paper, three of them. I believe he told me that just the posts for this year took up over 800 pages! Plus the other surprising thing is that I started this a year ago August 4th and now the journal has been viewed over 23,500 times!

I am continually amazed when people tell me how much this journal means to them. I post what is on my heart, true glimpses of Stephanie. Sometimes it flows, sometimes it’s a little jumbled…kind of like today. So I want to thank each of you for being a part of this. Doing this journal has been and is such a great way to keep everyone up to date.

Today looks like another beautiful day. Zach and I saw the sun shining through the clouds this morning on the way to school. What a beautiful sight! Another gift from God, just there for us to soak in.
Now I am looking out my office window, out into the woods. I see the sun shining through the trees. I love that.

Well, I’ve rambled on for long enough. Zach will be getting out of school soon. Short day today.
Please check out my guest book. Leave me a note to let me know you’ve been by. Your notes and emails are such a blessing to me. Thank you more than words can say.

New pictures too.

Quote of the day:

“The heart that loves is always young.”
~ Anonymous

Verse:

“I am the Lord your God. I am holding your hand, so don’t be afraid. I am here to help you.
Isaiah 41:13

Thursday, August 4, 2005 12:13 AM CDT

The world around me spins for a bit more
Most people want to live a life galore
My television brags of better days
While men and women claim to have the way
Each time they all seem so confused
While chasing answers only found in You

So let me say that I am grateful where I stand
You’ve offered me a love that loves me as I am
The life I found in You has changed the life I knew
So when I say that I have found someone to love
I owe it all to You

~ words to another Thomas song. He wrote it and Leah, his wife, sang it. It’s one of my favorites.

Yes, I am grateful where I stand.

We are back from Zach’s appointment. I think we were all a little nervous on the drive in. I had prayed that we (especially Zach) would have a connection with this doctor. Because that is very important especially considering what we were there to schedule.

Vanderbilt is like any other teaching hospital, you have to do the Q & A with the nurse and resident before the doctor comes in. I thought Zach was going to have a heart attack when the nurse got out a gown for him. He looked at me. Because I had promised him that we were only talking today. I whispered to him that we were only there to talk. So mama mode was activated…I didn’t care what the doctor said. I had promised Zach we were only there to talk. So that is all we were going to do. The prayers just continued to be answered. The doctor was wonderful. He spent a lot of time talking to Zach and answering his questions. Then he talked to us. He made me feel so much better. He completely agreed with having Zach scoped. Because he said that they are learning more and more about genetic testing everyday. Since they aren’t 100% it is best to have him scoped now. If he is clear then we will discuss any follow up. Most likely he would only have to be scoped every 3 to 5 years. The doctor told us since Zach and I had the genetic test and they were able to identify the defective gene in me and not him that most likely he will be clear.

So we went ahead and scheduled his procedure. I don’t think any of us want it hanging over our heads. He is scheduled on August 23rd. Because of the prep before he will have to miss school the day before and of course, the day of his procedure. He did really good the entire appointment. Especially once he knew that we were only going to talk.

So now I just pray that the time goes by quickly, that everything goes smoothly, and that my baby is clear.

Thank you all for your prayers about this morning. Things went so smoothly because of those prayers.

I woke up this morning to the sweetest note from Zach. You just got to know, Zach doesn’t like to write. So when you get a note, it’s gold. He actually wrote an entire page to Bennie and me. A tear jerker, definite keeper.
I’m going to miss him so much the next 3 days while he is at his youth retreat. But this is the retreat where he got saved so it holds special meaning to him. I pray that the Lord works in the hearts of these teens this weekend and blesses the adults that are going.

I have to stop here to get my baby all packed up.

Quote of the day:

“If you do nothing unexpected nothing unexpected happens.”
~ Fay Weldon

Verse:

The life I now live in the body I live by faith in the Son of God, Who loved me and gave Himself up for me.
Galatians 2:20

Wednesday, August 3, 2005 10:30 AM CDT

What a blessing this website has been to me! It has allowed me to keep family and friends up to date and so much more. It has also enabled me to build new friendships and rekindle old ones. I am a much richer (richly blessed) person now. Each of you are all an important part of that blessing.

I have to stop right here to give a shout out to my Shoe Buddy……

HAPPY BIRTHDAY GIRLFRIEND!!!!!
I hope you have the best day ever!

Tomorrow is the day. Zach is still torn up about seeing the doctor. But he’s glad it’s just to meet him this time. I hope that we like this doctor and feel comfortable with him. Because that’s really important, especially when it’s for your child.

Me? I’m doing okay. Much better than last week. My pain level has gone back down to a 4 and that’s livable. Talk about some answered prayers there. Because being at a level 8 daily was getting the best of me.

Thank you for all your prayers. Today is a good day. I hope it is for you also. Leave me a note on my guest book or send me an email (crowe725@aol.com).

Quote of the day:

“A pessimist is one who makes difficulties of his opportunities and an optimist is one who makes opportunities of his difficulties.”
~ Harry Truman

Verses:

For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
Romans 8:24-25

Monday, August 1, 2005 5:54 PM CDT

**** I posted this, this morning but had trouble trying to get it to load. So that explains the good morning at this time of day. No, I didn’t just wake up…ha ha. Check out the new pictures too.

Good morning!

This is the last week of summer vacation for Zach before he starts 8th grade. I’ve really enjoyed spending the summer with him, being here with him. I see him growing up so fast and I catch myself wishing that he would slow down just a little. He’s become such a funny, cute teenager. Never meets a stranger.

I got the call this morning. I haven’t posted about this because I just haven’t had the words to share until now. Before I tell about the call I have to back up just a bit. Years ago, when Zach was a baby, I can remember praying, “Please Lord, I will gladly take any surgery, just let my baby be okay.” So, when Zach and I went in when he was 8 years old for genetic testing, Bennie and I were so happy to hear that he didn’t have the defective gene like his mother. That meant that FAP stopped with me. It couldn’t go on. Years went by. I even took our results to a conference I attended and the genetic doctors there told me that Zach was at the same risk as the general public for developing colon cancer.

But everyday as I watch him grow up I see so very much of my brother, Dusty, and also me in him. So, that little nagging worry has been in the back of my mind. I talked to a few of my doctors about how I feel and what they would recommend. I told them that I need to make sure I take care of Zach. Genetic tests are not 100% accurate (our test did come back 99%). I don’t want to sit back thinking everything is just fine only to find out when Zach is 25 that he has colon cancer.

Bennie, my mother, and I have talked about this. We all agreed that Zach needed to be scoped so we would know. We decided this a couple of weeks ago. I just got the appointment to meet his GI doctor this morning. No, it didn’t take weeks to get a call back from them. It took weeks for me to make that call.

I pray with all I am that Zach will be clear. I believe after all I (we) have been through in the last 5 years that Zach would be scared to pieces if he found out he had it. I can’t tell you how many times he has looked at me and said, “Mama, aren’t you glad I don’t have FAP?” or “I’m so glad I don’t have what you have.”

Diva, I pray for your strength as we walk through this. You are my hero. You walked this road with 2 children. The strength I have comes from the love of God and also my mother and Bennie.

Please join me in prayer about this. Zach’s appointment to meet the doctor is this Thursday at 9:00. You know God just works things out because what are the odds of us getting in so quickly? Plus, the other good thing is that Zach leaves for a youth retreat that afternoon for the weekend. So he will be able to escape all of this and just be Zach.

Zach just popped in my office and saw the note about his appointment. So we talked for a minute about it. He is not a happy camper. But who would be at the thought of being scoped. I’ve had to do it since I was 8 years old and I still dread it.

No doctor appointments this week!!!!! I’m feeling a little better today, pain level is back down to 4, that’s livable. I hope you all have a beautiful Monday! The sun is shining here in KS.

Quote of the day:

It takes as much energy to wish as it does to plan.
~ Eleanor Roosevelt

Verse:

The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.
Habakkuk 3:19

Hearing from you would brighten my day even more.

Friday, July 29, 2005 8:07 AM CDT

If I had it to do over again I would have never left the hospital after my scan. They should have given me a bag of fluids to replace what the Lasik removed. But hardheaded me put on my tough girl act and willed myself to walk out. I thought if I could just get home I would feel better. It just got worse unfortunately. Bennie and I knew we could be headed for trouble when I started having the severe foot cramps, vomiting, and dizziness. I have basically stayed in bed for the past 2 days trying to recover. Today I am a little better, still not myself though. I’m having a lot of discomfort in the area of my pouch. But I am just going to watch it for now. It’s been going on for a couple of days. It may not be the smartest thing to do, the waiting. But I have just had my feel of doctors for this week. They don’t have the answers and don’t really know how to help me.

I talked to my urologist’s nurse about my renal scan yesterday. My kidney seems to be functioning okay. Which is good. It means I don’t have to have a nephrostomy. Now that’s wonderful news. The bad news is that the pain I have is tumor related. So we have to get these monsters shrunk.

I know that this post seems a little down. But please know my faith and hope is still in God’s plan. It’s just the doctors that have me disheartened right now. But that’s the normal cycle I’ve learned when you are dealing with a chronic illness.

I’m still taking it easy today. I have determined today is going to be a good day. You know sometimes that’s all it takes…just that determination. I know, I know, that determination gets me into trouble sometimes.

I hope you all have a wonderful weekend!
Don’t forget to leave me a note on my guest book to let me know you’ve been by.

Quote of the day:

“I am not afraid of storms, for I am learning how to sail my ship.”
~ Louisa May Alcott

Verse:

The Lord is good to those whose hope is in him, to the one who seeks him.
Lamentations 3:25

Wednesday, July 27, 2005 12:15 AM CDT

This is just a quick note to catch you up.
Stephanie had the scan done this morning. During the scan she started feeling bad and now she is very sick. I am watching her. She has taken her nausea medicine but that hasn’t help any. She says she feels like she is going to pass out every time she moves around.

Please keep her in your prayers.
Oh, and we are still waiting to hear from the doctor about the scan.

Tuesday, July 26, 2005 8:46 PM CDT

THREE HOURS!!!!!!!!

That’s how long I waited to see the doctor before I left. You know I understand how things can get in doctor offices. But come on three hours. I try to always get to my appointments early. But on occasion I have been late…not three hours late though. I guess you can tell that I am pretty fired up about this.

After I had been waiting for 2 ½ hours I went out into the hall and spoke with the nurse. She told me that the doctor had just gone into another room and should be down to mine next. Well, I waited patiently (my patience was wearing thin). Thirty minutes later I saw her walk past my room and into another room. That was all I needed. I picked up my purse and marched myself out into the hallway and told the nurse I had been more than patient. Would she please just have the doctor set me up with Sports Medicine so I could schedule my procedure. Let me tell you she got the doctor out of the other room in the blink of an eye. Even though my patience was worn to a frazzle I was still polite like Diva taught me to be.

The reason I sat there so long waiting was that I thought any minute the doctor would stroll in. I had waited since I made the appointment last Friday to see her. I had waited with a leg that hurt to walk on. So I just wanted some relief. Hopefully I will be able to get an appointment with Sports Medicine soon.

One of the residents spoke to me in the hallway. I told him that I had been waiting for three hours and that I had to be back at Vanderbilt in the morning at 8:00 am. I said that I was just tired of Vandy, my second home.

Have you ever waited that long for a doctor? I won’t ever do that again that’s for sure. My time is just as valuable as theirs. If I came in three hours after my appointment I’ll bet I wouldn’t get worked in. But they thought nothing of me (at a level 8) sitting, waiting for three hours.

I’m not mad about this. I guess I’m just amazed, not in a good way amazed though. Common courtesy would have been to let me know the doctor was running behind. You know keep me informed instead of leaving me in an exam room to wait for three hours.

Okay I guess I’ve gotten that off my chest. Time to walk away from it.

I’m tired tonight. Today has been a tough one. My pain level has stayed at 7/8. Tomorrow when they do this scan I hope they are able to figure something out. If the doctor tells me the nephrostomy will relieve some of the pain, then I will agree.
Please just say a prayer that I get some relief.

Quote of the day:

With every breath I take, I am thankful for His love.
~ Stephanie

Verse:

For where your treasure is, there your heart will be also.
Matthew 6:21

Tuesday, July 26, 2005 10:14 AM CDT

Well, it’s the day after my birthday.

I want to thank all of you for making this birthday such a special one and sharing it with me.

Last night when Bennie took me out to dinner and a movie I tried very hard not to let him know how I felt. By the end of the day I was at a good 8. I had a hard time getting to sleep even though it was way past my usual bedtime. But hardheaded me didn’t want to take pain medicine. I don’t like to take it because of the way it makes me feel the next morning, so groggy and slow. So I’m determine I can will myself to relax and ease the pain. I know that’s not the smartest thing to do.

Even though we got to bed so late last night I was awake most of the night. I thought I was getting the virus Queen just had. I just felt really bad all night, like throw up bad. This morning my level is an 8/9. I hate to be so whiney but I’m trying very hard to be honest and share. So I need your prayers. Tomorrow I go in (8:00 am) for my renal scan. This will determine if I need to go ahead and have the nephrostomy tube. I don’t want to have to have one. But if it will help to relieve some of this pain I will deal with that “accessory”.

I have an appointment with my orthopedic doctor today about my Baker’s cyst.

That is all the medical stuff I am going to talk about today. I am looking out my office window and see the sun shining brightly through the trees in my backyard. Another beautiful, hot day. My house is quiet. Not because Zach is still asleep…no, he went with his best friend (Queen’s son) to their lake house for a couple of days.

Today think about 5 things you are thankful for and share them with someone. It will bless you I promise. Now don’t go the easy way and say what we already know; family, God’s love, and so on.

My 5

1. My 40th birthday
2. My faith
3. The sisterhood I share with my girlfriends
4. My mother’s love for me.
5. The prayers and support from each of you.

I have to share this with you. I talked to Thomas after his concert at my party. For those of you that were there you know how many people were there. I tried to spend some time with everyone there which meant I didn’t get to sit down and enjoy Thomas. I told him how much I appreciated him giving his concert. But that I didn’t get to enjoy it like I would like to. So guess what he said? Stephanie, you just let me know when and I will come to your house and do this for you. Is he not the best? Yes, yes.

Thomas, his wife, Leah, Matt, and Kendra have come to see me in the hospital a few times and sang to me. Those are some of my best memories of those hard times. The first time it was Thomas, Leah, and a friend of theirs. This was the first time I was in the hospital. I was in for two weeks and it was very rocky, almost checked out.

Bennie had been telling me he was working on a surprise for me. He was trying to lift my spirits because I had been so deathly ill. The day that he had the surprise was scheduled for it started to snow and snow and snow. I remember sitting by my window while he encouraged me to try to eat again. We looked out the window at the beautiful snow. He told me that he didn’t know if the surprise was going to work out. Of course I had no idea what he was talking about.

I feel that I have to share this story with you. I know it’s a backtrack. But so important in this journey. So important to show again that He does answer.

I got back in my hospital bed. I was having such a rough time. I was trying to keep it all together and be strong. Bennie said he was going to check on something. He pulled the curtain and left the room. I remember (like it was yesterday) grabbing hold of my bedrail and crying to God that I had no words for this but that I needed help to go another step. It brings tears to my eyes right this minute. It was such an incredibly tough time.

Guess what happened then?

I heard Thomas voice behind the curtain singing “Open The Eyes Of My Heart”. Then he, Leah, and their friend came in and sang to me for at least an hour. It was funny because the nurses stood in the hall and patients asked for their doors to be opened to be able to hear. Talk about music to the soul. All I have to say is answered prayer, never doubt it and always lift them up. If you don’t pray He can’t answer.

Quote of the day:

“A celebration is…a conscious commitment to joy.”
~ Emilie Barnes

Verse:

Do not withhold your mercy from me, O Lord, may your love and your truth always protect me.
Psalm 40:11

(Thanks to my Infra Gang Girls for the quote and verse.)

You know a note on my guest book or email from you would be such a wonderful treat!

Don't forget to check out the new birthday photos. Sorry two of them are sideways.

Monday, July 25, 2005 9:01 AM CDT

IT’S MY BIRTHDAY!!!!!!!!!!

I have officially entered the forties….
I’m forty years old…hmmmm. Funny, it doesn’t feel any different.

My birthday party……it was the absolute best…other than the heat and sweating (glistening) more than any girl should. I am humbled and amazed at all the people that came and stood the heat with me to celebrate. Thank you from the bottom of my heart. My family came from Mississippi and East Tennessee. Then one sweet friend and her friend took the scenic route to my party….they missed the exit and drove all the way to Bucksnort, TN. They bought themselves and me a magnet that says Bucksnort, TN. A few of you came that I know have medical conditions. One friend drove hours to get to the party. Although she had never met me before. Then there was Diva, Queen, Soul Sister, Becky, Lewis, one of my doctors, and Thomas. I hope you got a chance to enjoy my friend, Thomas. His music has been such a strength to me for the past 3 years. I am so thankful to him for sharing with us at my party.

The party……was just amazing! I had the best time. Plus, I got my one true birthday wish…to spend it with family and friends. What a blessing!

The food, oh my goodness. Diva gave me the most beautiful “Princess” cake. It looked like a wedding cake it was so big. One of my Infra Gang buddies brought the most fabulous strawberry cake. If you had a piece you definitely know what I’m talking about. There were also lots of cookies and bite sized desserts.
But for the most part everyone just wanted to know where the cooler was and some cool air.

The fireworks. I had my very own fireworks show! It was unbelievable! I stood there and just couldn’t believe that someone had given my Soul Sister all these fireworks for me. Zach, Lewis, and Kelsey did a wonderful job of the setting them off.

Lewis is new to our family but has jumped right in. Anytime I have needed his help he is right there. When he lived in Columbus he use to DJ for parties and stuff on the side. He DJ for Zach’s 13th birthday party and now my 40th. Talk about a gap. Such different music. He did a great job!

My aunts, uncles, and cousins, I love you all to pieces! What a present you gave me just by coming to share this birthday with me. It was so great to catch up and to laugh so hard. I love you guys.

Diva, Diva, my Diva, where do I begin? First of all, thank you for being my mother and loving me enough to make all the sacrifices you had to at such a young age. All my life I have always known you would be right there beside me. We are attached at the hip. Everyone loved my outfit at the party and that was all thanks to you. You, Bennie, and Big Daddy always know just how to make me feel special, like a princess.

Bennie worked so hard getting everything together and set up for the party. He’s the best. We had such a wonderful time. I love this man!

My Zach, my heart, spent his own money to buy me a present. But the best part of his present was the handwritten note he attached to the gift bag. Words straight from his heart. The best gift a mother could ever get. I am so blessed.

The gifts, oh my goodness! I was overwhelmed by the gifts and flowers. Thank you so very much. I am blessed far more than I deserve. But I am so thankful for each and every blessing.

I have a ton of pictures from the party. I will be adding new pictures to the journal soon.

I am still recovering from the party and all the heat.

Thank you from the bottom of my heart for sharing this birthday with me.

Some of you got the impression that I had a big announcement to make at the party. I really didn’t want the party to be about that. I wanted Zach to have fun with his friends and not walk up on another medical conversation, at least not at the party.

So to catch you up. I can’t remember if I have posted this. If I have, then just know that my “chemo” brain has been worse in the past week.
The last CT shows that 2 of the 4 tumors have shrunk. One stayed the same and one took a growth spurt. Bennie and had a long conversation with my oncologist last week. Seems like I did post some of this. Anyway, we talked about it and decided to wait until we get the results of my next CT in 6 weeks. At that time if there is shrinkage in the growing tumor I will stick with the treatment I am on. If there is growth then I will add 2 more chemo to my treatment. For these two I will have to go in every week, it’s the tougher stuff.
But I’m made of tough stuff. So wherever the journey takes me, I’ll keep on walking. Because my faith and hope is in the Lord for He loves me. I am His.

I would love to get a note or email from you today. Because after all it is my birthday.

Quote of the day:

“What lies behind us and what lies before us are small matters compared to what lies within us.”
~ Ralph Waldo Emerson

Verse:

Find rest, O my soul, in God alone; my hope comes from him.
Psalm 62:5

Saturday, July 23, 2005 8:13 AM CDT

Today is the day!

I’m so excited I can hardly stand it. Some of my family got into town last night and the rest will be here some time today.

Diva has already called this morning to talk about party stuff. Then Bennie gave me the talk…remember to take it easy…don’t overdo yourself.

Today is going to be another HOT one. Hopefully it will cool off some by this evening.

Don’t forget to bring your beach chairs. I’m so excited about the concert. I can’t wait for you to hear my friend, Thomas.

Okay I guess even on party day I have to keep you up to date. Since some of you knew what were going on you have asked. I had to go to Vandy yesterday to leave a urine specimen to check for another UTI. While I was there I went back to my oncologist office and talked to his nurse about my leg. We decided it was the Baker’s cyst pressing on nerves. She said that it needs to be removed. I told her if anyone could do it right then I would go for it. I have an appointment with my orthopedic doctor on Tuesday. So if you notice me limping it’s the bum knee that’s doing it to me.

That’s really all I have for now. I have lots to do before I see you later!

Quote of the day:

“Worry does not empty tomorrow of its sorrow. It empties today of its strength.”
~ Corrie Ten Boom

Verse:

Be strong and take heart, all you who hope in the Lord.
Psalm 31:24

Don’t forget to click over to my guest book and leave me a note to let me know you’ve been here.

****New pictures****

Thursday, July 21, 2005 4:24 PM CDT

Okay, okay, I’m sorry for taking so long to post again. But as I’ve said before, I only post when the words are there. I have sat down at this computer a few times since Monday….but nothing. So I waited. I didn’t mean to worry anyone.

Today Bennie and I went back to see my oncologist. This was the original appointment I had with him. Before it was moved up. His office didn’t cancel it. That made Bennie very happy because he didn’t want to wait until August 18th to discuss adding other chemo drugs to my treatment. I really don’t like to be in situations like that. I don’t know if it’s just going through this or if the adrenal issue has something to do with it. I kept thinking to myself, “Things go smoother and easier when I’m by myself.” Of course, Bennie’s response is, “that’s the problem. You go in there with your smile and sunshine personality and it’s hard to believe you hurt like you do.” Today I didn’t smile. We all talked for a while. Then Bennie and I talked about it after we left. My doctor wants to do a follow up CT scan in 6 weeks, blood work, and appointment. Bennie and I decided to wait until after the next CT to add anything to my treatment. If there isn’t any shrinkage, or if there is growth, or if the pain and issues get worse then we will add 2 chemo drugs along with what I am taking now. For those I would have to go in every week for treatment. Of course, with this comes its share of side effects. But you just have to weigh the pro and cons out and walk out on faith. Yes, you have to have a tremendous amount of faith when dealing with these desmoids.
So, we will see.
I am very thankful for the shrinkage that I had in 2 of the 4 tumors. The doctors are amazed that I had shrinkage that quick. I said that I wasn’t it was all the prayers that did it. God answers. Now we just have to work on the one that has started to grow. Bennie watches me. He worries and I try to do everything I can to keep him from worrying. But I know if the shoe were on the other foot I would be the same way. Plus, he’s a fixer and he can’t fix this.

Now that’s enough about all that medical stuff. Wore me out!!!!!!!!!!
I’ve got better things to post about….like the celebration!

I’M SO EXCITED!!!!!!!!
I can’t wait until Saturday. We are going to have so much fun. I had lunch with Diva yesterday and of course, all the talk was about the party. I’m not sure which of us is more excited. A bunch of my cousins are coming. Plus, my aunts and uncles. Talk about a family reunion. Someone asked me what I was the most excited about. I said hands down, seeing everyone and just spending time enjoying the evening.

I know the next two days are going to be crazy! I can’t wait to see you all on Saturday.

Quote of the day:

Savor life’s tiny delights - a cracking fire, a glorious sunset, a hug from a child, a walk with a friend, a kiss behind the ear.
~ John Anthony

Verse:

We will shout for joy when you are victorious and will lift up our banners in the name of our God. May the Lord grant all your requests.
Psalm 20:5

Monday, July 18, 2005 10:48 AM CDT

One week from today I will be 40 years old! Of course, this Saturday is when we are all going to share the evening together and celebrate. I am very excited about everyone hearing my friend, Thomas. His music has been an incredible strength to me.

I’m ready to leave these 30’s behind. The last few years have been tough ones. I’m looking forward to the fabulous forties. It seems like everywhere I go lately my age comes up somehow. The other day Diva and I met to discuss party stuff. She surprised me. She decided to go ahead and buy my present that day. So when you see me at the party I am wearing the wonderful gift my parents gave me, head to toe. While we were in this shop my mother mentioned my birthday. The salesgirl asked me how old I would be. When I said 40 I thought she was going to fall out. She said that she thought I was about 20. Can you believe that?

I had someone the other day ask me why I gave out my age so freely. I told them that I was proud to be the age I am. I had earned every one of those years and I claimed them all. To me, by not claiming them it’s almost like a slap in God’s face. We are all here on this earth by His grace. Each day is a gift.

This week, nothing but party thoughts! Saturday will be here before you know it. I’m so excited!!!

A note or an email from you would really get my week started off great. Thank you for all of your prayers and support. They mean the world to me.

Quote of the day:

“Write it on your heart that every day is the best day of the year.”
~ Ralph Waldo Emerson

Verse:

We wait in hope for the Lord; he is our help and our shield.
Psalm 33:20

Saturday, July 16, 2005 9:58 AM CDT

Good Saturday morning!

I am so excited I can hardly stand it! Every time I hear from someone else I am amazed. My cousins, aunts, and uncles are coming! I just can’t wait! Plus, we’ve got the concert from Thomas! Then, of course, ending the night with fireworks. I can’t believe I made the front page of our local paper again. Many of you have already RSVP…thank you. I have a lot to get done this week to be ready for next Saturday. I’m really looking forward to enjoying the evening with all my friends and family.
I hope you all have a wonderful Saturday. Then there’s Sunday, my favorite day.

Quote of the day:

None of you is a true believer until you wish for your brother (and sister) what you wish for yourself.
~ Hadith

Verse:

Anything is possible if a person believes.
Mark 9:23

Thursday, July 14, 2005 10:29 AM CDT

Okay, so I have been “torn up” this morning by my girlfriends about something I posted and had forgotten about. My friends and I love to use the phrase “torn up” for lots of different reasons. They “tore” me up about the “no gag gifts” that I posted about my party. So let me clear this up. I only said no gag gifts because I am not sad about turning 40. Actually I’m pretty proud to have made it to 40. So it’s a celebration to me. I’m not asking for gifts. I just want to share the evening with friends and family.

So here’s the particulars about the celebration…

What: Birthday/Shrinkage Celebration for Stephanie
When: Saturday, July 23rd at 7:00 pm
Where: Lot by Community Trust Bank in Kingston Springs
(where the Benefit was held last year)
Come join us for a concert and fireworks in celebration of Stephanie’s 40th birthday & in appreciation for all of your prayers and support. Bring your beach chairs and your favorite dessert and enjoy the evening with the Crowe family.

Please R.S.V.P. (615) 952-3517 or (615) 243-1436
Or email to crowe725@aol.com

Please don’t feel that you have to bring a dessert to come. Diva just thought it would be fun to have different things to try. I am bringing petit fours and cheesecake. Oh and the concert is…you guessed it…..my friend, Thomas.

Quotes of the day:

For all that has been, Thanks. For all that will be, Yes.
~ Dag Hammarskjold

What seems impossible one minute becomes, through faith, possible the next.
~ Norman Vincent Peale

Verses:

For great is your love, reaching to the heavens; your faithfulness reaches to the skies.
Psalm 59:10

Love the Lord your God with all your heart and with all your soul and with all your strength.
Deuteronomy 6:5

Wednesday, July 13, 2005 5:58 PM CDT

The innocence of a child…..
The innocence of a grown child.

I crossed paths with Theresa and her brother, David, today while spending another day at my second home.

Theresa was as happy as can be, very quick to introduce herself and her brother. She also wanted everyone to know she had 4 brothers. She was very outgoing and obviously didn’t meet very many strangers. None of us that came in contact with her could help but smile. I looked at Bennie and said the first two lines of this post.

She had the innocence of a child even though she was an adult. The just be happy, joyful for the day kind of thing. You see, Theresa had Down’s Syndrome. I’m sure her brother had brought her there to see a doctor. She just really touched me and I had to share the experience with you.

I still smile thinking about her walking away with her brother after we had talked. She had her Barbie, her walkman (headphones on her ears), a pink backpack, and her bubbly personality complete with huge smile. She was the sunshine in my day.
Thank you! I was blessed.

Okay, I guess I have to catch you up now on the doctor visit. New doctor, oh joy! That means a long list of questions and history. After a while that part of it is probably one of the hardest for me in all of this. Believe it or not.

What did I think about this doctor? He was okay, nice enough. I liked that he really had taken time to study some of my history so I didn’t have to explain quite as much as usual. This visit ended up taking 3 hours!!!!!! Most of that time was waiting in the room for the doctor. The long and short of it is….guess? Lets watch things. My absolute favorite phrase (NOT). But for this I happen to agree. He said that I had so many issues that there was no way to guarantee removing my gallbladder would relieve any pain. Although I do have gallstones and pain related to the gallbladder. The kidney and gallbladder are very close. So our hope is that we can stop the growth on that side, relieve the pressure on the kidney, and get some much needed relief. If that happens then we can continue to just watch the gallbladder. If the pain doesn’t ease with shrinkage or it gets worse then we will discuss possible surgery.

Okay enough about all of that. I have a mama praise. Zach was chosen as one of the captains for his middle school basketball team. He left this morning for Tennessee Tech for camp until Friday. I miss him already.

I ran into a friend today that I hadn’t seen in a while. Had to do “the catch up”. She just looked at me and said that most people wouldn’t have as positive an attitude as I do. She said you must have a lot of faith. I just smiled and said yes, I do. Because whether I am healed here or in heaven I win. So see it’s a win, win situation for me. The true test is how I walk the journey God has given me while I‘m here. It’s so important to me to be a positive influence to everyone I meet.

I want to end the post today with the chorus to “Hold On” by my friend, Thomas. This song has special meaning to me.

Hold on to the promise
Hold on as you walk this
Hold on to the dreams that can come true
Keep hold on with all you got
To the One that’s holding on to you.

Quote of the day:

We have a God who delights in impossibilities.
~ Andrew Murray

Verse:

It is God who arms me with strength, and makes my way perfect.
Psalm 18:32

Tuesday, July 12, 2005 11:42 AM CDT

I don’t care what the day brings, I have decided to be happy just to be here and smile my way through it. I say that on the heels of a tough past week. But you know the saying, “Your attitude determines your altitude.”

Thank you for your prayers. They have been answered. My pain level has decreased a little. Tomorrow I will meet this new doctor to talk about my gall bladder. I’ll let you know how that goes.

I’m working on surprises for the celebration. My biggest surprise has already confirmed. So I am thrilled. I hope you have all marked your calendars for Saturday, July 23rd. Either today or tomorrow I will try to post an official invitation. It’s going to be so much fun! I can’t wait!

I don’t really have anything else right now.
The sun is shining and it’s a beautiful day! Thank you, Lord. I am joyful for today.

Quote of the day:

Nothing we do is more powerful or more life-changing than praising God.
~ Stormie Omartian

Verse:

It is good to give thanks to the Lord, to sing praises to the Most High. It is good to proclaim your unfailing love in the morning, your faithfulness in the evening.
Psalm 92:1-2

Monday, July 11, 2005 9:33 AM CDT

The weekend was very tough on me. I feel fragile and I think my family and friends feel that too. All I know to do is make the best of each day. Because, after all, that is all any of us have. This is just a reminder.

Please continue to pray for my boys. Bennie and Zach are having a tough time. I try to smile and do everything I can so they won’t worry. But I guess I should be thankful to have that kind of love.
Zach is going to basketball camp Wednesday and won’t be home until Friday. The moms are all suppose to go also and stay in a nearby hotel. I’m not sure if I will be going or not. I will see how this week goes.

The highpoint of my day yesterday was being back at CRBC. We have missed a few Sundays due to vacation and me not feeling well. So it was great to be back. Our church family is such a source of strength to me.

Okay, so now we are just under two weeks before the big celebration. I am trying to figure out a couple of things and then I will post an invitation here. I hope you all will come. I am so thankful to the man that gave my friend fireworks for my party.

On a day like today a note or email from you would mean the world to me. A little ray of sun on a rainy day.

Quote of the day:

Part of waiting upon the Lord is telling God that you want only what He wants - whatever it is.
~ Kay Arthur

Verse:

As for God, his way is perfect, All the Lord’s promises prove true. He is a shield for all who look to him for protection.
Psalm 18:30

Friday, July 8, 2005 4:48 PM CDT

YUCK! YUCK! YUCK!

That’s what I have to say about the disgusting cocktail they mixed up for me today. It’s never great to drink that nasty barium. But at 8:00 am, it’s just wrong. I drank it though, had my “big girl” shoes on. I’m sure the majority of you have not had the experience of a small bowel follow thru, so I will tell you a little about the test. I had to drink two bottles of barium (nasty). Then I had to wait for it to work through my system. At different times they would take x-rays to see how the barium was moving through. It’s a long process. The doctor told me he was going to look at my CT films and compare with what he saw in the x-rays today. He did say that there was no obvious obstruction, which I knew there wasn’t. There is a narrowing probably due to one of the tumors.

After I finished there (my 3rd day in a row at Vandy), I had to go all the way to Cool Springs to see my GI doctor. I talked to his nurse yesterday, told her what was going on, and she told me to come in today.
This doctor is my favorite. He’s the best, very compassionate and personable. If any of you ever need a GI guy just call me and I will gladly give you his name.

I have to backtrack to let you know I got a copy of my CT report and a cd burned of my last 2 CTs. I wanted my GI doctor to have these to view today. It’s funny that in the report from my oncologist visit yesterday he notes that I am “not as cheerful as she normally is but still within normal limits.” Then my GI doctor commented that I wasn’t my chipper self. I told him that was because I was on Day 5 of a level 8 and I was tired! When I see this doctor I feel like I can communicate with him and get things accomplished. I told him that all I wanted was for them to figure out the source of the pain (whether it be my gallbladder and tumors combination or other) and fix it. My biggest thing is lets try something, make a move, just hoping isn’t getting the job done.
He agreed and set up an appointment for me to see a doctor about possibly having my gallbladder removed. I will have to call my surgeon to talk to him about it. Because he was very adamant about not wanting my gallbladder to be removed. He said that it’s not good for someone with a J pouch. We will see. Anyway, I see the new doctor next Wednesday.
My GI doctor said that he feels I have a combination of reasons for the increased pain; tumors, gallbladder, problems with small bowel. So I left his office feeling much better about being understood.

I haven’t posted really about what I found out about my CT scan. You know me, I like to read the report myself before I talk about it. We have good news and not so good news. Yes, we can still have the celebration (and are going to) because a couple tumors did shrink. Thank you God! There are four, although they aren’t really separate, kind of the cloud effect. One stayed the same and the other actually grew significantly from 6cm x 4.4cm to now 6.6cm x 4.7cm. This could be the reason for the increased pain and small bowel trouble.

I am happy that I have had some shrinkage, please don’t get me wrong. But I feel that there are problems that need to be addressed and figured out to give me a better quality of life. That’s what I am after…my life.

Apparently even though I have had my stent replaced and it is in good position, the right kidney cannot drain properly. My only other option would be to have the dreaded nephrostomy tube. I discussed this with my urologist and we decided to keep an eye on my kidney and wait for now. I do not want to have that tube sticking out of my back. Tired of “accessories” that I didn’t pick out. Plus, it wouldn’t go with my tiara for the celebration.

Okay, so on to more fun things. My brain is tired from doctors, hospitals, tests, and so on. When I came home today I saw that the tent has been taken down. Talk about taking the wind right out of my sail. I called Bennie and told him and said now I don’t know where I can have my party. Of course, he told me not to worry, we would figure it out, and they rent tents. So if any of you have any contacts, helpful thoughts, advice, now is the time to speak up. I was really feeling pressed thinking I had to have my party on the 16th for that tent. But the definite date for my party is Saturday, July 23rd. Next week, Diva and I are going to get all the planning and stuff done for our celebration. I hope you all will come share the fun with me. I have some surprises I am working on for the party. Plus, we have the fireworks!

Anyway, I’m very tired. That’s all my words for now.

Quote of the day:

Faith means you have peace even when you don’t have all the answers.
~ Joyce Meyer

Verse:

Brethren, for this reason, in [spite of all] our stress and crushing difficulties we have been filled with comfort and cheer about you [because of] your faith (the leaning of your whole personality on God in complete trust and confidence).
1 Thessalonians 3:7

Thursday, July 7, 2005 3:07 PM CDT

I am forever blessed and amazed by the outpouring of love and continued prayers from you. Just today I received a couple of notes on my guest book, over 20 emails, a few notes and cards in the mail, and some phone calls. I am just overwhelmed by your caring. Every day I am thankful for the support, love, and prayers from each of you. Because, after all, prayer is the best gift you can give me.

Okay, I know you are wondering what I find out at the doctor’s office. Bennie and I went together. We heard most of the same thing, but then some different. He heard that there are 4 tumors that basically link together. Two of the tumors have stayed the same. Two of the tumors have shown marked shrinkage. He heard that those two tumors are 1/8 the size they were. That is were I heard different. I heard that there was marked shrinkage of an 1/8 in size. Now don’t get me wrong, any shrinkage is wonderful and exactly what I wanted to hear. My problem is that we are grasping trying to figure out the increased pain. In the morning, bright and early, I have to be back at Vandy (3rd day in a row) for a small bowel follow thru. A few of the other things he talked about were that I have gallstones, an enlarged pancreas, distended rectum, my right kidney is distended, the left one has a small growth on it, and small bowel issues with tumors. So from all of this maybe they can figure and fix the pain. That’s all I want. I’ve had these tumors before, but never hurt this bad.
You know I am so excited about having yet another small bowel follow thru. Especially now with my small bowel issues. The doctor said to call him immediately if I have any trouble relieving myself of the barium after the test. The concern is because the contrast turns to concrete basically if not relieved promptly. So fun, fun.

But that’s quite enough about that….
We have a celebration to get ready for and I need your help. Please, please any of you that would like to help me plan this I would greatly love your help and advice. I am waiting to hear back from the man that has the tent that we will hopefully be able to use for the party. It looks like the party will be next Saturday, the 16th. I would like it to be closer to my actual birthday. But will be very thankful if we can use it on the 16th. So any of you, please, I would love your help.

Quote of the day:

Our lives teach us who we are.
~ Salman Rushdie

Verse:

This is my comfort and consolation in my affliction: that Your word has revived me and given me life.
Psalm 119:50

Thursday, July 7, 2005 1:50 AM CDT

Well, we (Zach, Becky, and me), ended up spending yesterday afternoon at Vanderbilt. My urologist wanted to see me. He had an x-ray taken to check the placement of the new stent to make sure there wasn’t a problem with it. The stent looked good as far as placement. He said his concern was that the desmoids were growing and putting pressure on my kidney. He wanted to know when I was having my next CT scan and seeing my oncologist. I told him on the 20th and 21st. He wanted to move them up…to yesterday afternoon for the CT and this morning to see my oncologist.
He talked to me about what my options were; placing a nephrostomy tube if the kidney isn’t draining properly (he and I both don’t want to have to do this), changing chemo, possibility of surgery, going to another facility, and so on. I told him I didn’t want to go somewhere else.
So from there I went down for my CT scan. That in itself is a whole other story!

Everyone I have talked to has asked the same questions. What do you think you will hear from the doctor? Are you scared? How do you handle this?

These are my answers. I pretty well know what the doctor is going to tell me. I say that because I know what is going on inside my body. I see and feel the differences in how my body functions. Am I scared? No, I’m not scared. How do I handle this? I don’t, God does. He’s walked every step of this journey with me.

But I will tell you what is hard. Knowing your family and friends hurt for you. Seeing the little bit of fear in Zach’s eyes when he heard my tumors were causing trouble. Loving extra hard now. It hurts me to know that my family and friends struggle with this.

But I will say here that I am forever thankful for your love, prayers, and friendships. You have all blessed my life more than you will ever know. You are an important part of this journey. Thank you for walking it with me. I am never alone.

I will post later this afternoon about what the doctor says this morning. Please leave me a note on my guest book for me to come home to. Throw a little “sunshine” my way.
Because even though it seems “cloudy” right now, the sun is just behind those clouds.

Quote of the day:

We look for visions of heaven, but we never dream that, all the time, God is in the commonplace things and people around us.
~ Oswald Chambers

Verse:

I am not alone, because the Father is with me.
John 16:32

Wednesday, July 6, 2005 8:52 AM CDT

Okay, Day 3 of a level 8 is wearing on me. I’ve already left a message for one of my doctors this morning. Not sure what is causing this increased pain, other than the tumors and maybe another infection. I had actually gotten use to the new stent, wasn’t really bothering me anymore. That is until 3 days ago. I feel nauseous most of the time because I hurts so much.

I don’t know how much sunshine we will see today, if any. But a note or email from you would really brighten my day.

Good, exciting news……..

Birthday Celebration plans are in the works. The guy that has the tent we would like to use is checking to see if he can keep it up until the 23rd for my party. If not, then we will have to move the party up to the 16th. I’m going to try to find out today so I can let everyone know.

My “Soul” sister decided I needed fireworks for my party. So her present to me was going to be that. She went to see the guy that has the tent (different fireworks tent) we want to use. To make a long story short, he knew about the party already and gave her like $140.00 worth of fireworks as a present to me! What a wonderful surprise!
Let me tell you, I am excited to pieces about the fun we are all going to have. For that day nothing medical matters at all. It’s all about being with friends and family, having fun and enjoying each other. I hope you will all come share this day with me.

Quote of the day:

If you can’t change your fate, change your attitude.
~ Amy Tan

Verse:

Blessed are they that have not seen, and yet have believed.
John 20:29

Tuesday, July 5, 2005 9:46 AM CDT

Do I notice a difference now that I’m on my lower hydrocortisone dose (½ the dose)? The answer is yes. I’ve noticed a couple of very obvious things. First of all, my energy level…what’s that? Zero practically. Second of all, I haven’t talked very much, very few words. It’s just kind of strange feeling, still trying to put it to words.

The boys and I had a great Fourth of July. They took me to the Pegram parade. Usually after the parade we go over to the park. But this year they took me home to get out of the sun…because of my sun poisoning. We had lunch at Bennie’s older sister’s house. Then had dinner at his younger sister’s house. After the sun went down we headed back to Pegram for the fireworks. The fireworks were fantastic! Plus, I got the bonus of seeing my “Soul” sister and her sweet mama. That really made my day. We hugged and acted like we hadn’t seen each other in forever. You know I love you to pieces girlfriend. You are such an incredible strength to me. Thank you!

God has richly blessed me with all of you. I am forever thankful and humbled by your love and prayers.

Please continue to pray for Bennie.

Please also check by my guest book, leave me a note to let me know you were here. Your notes really do brighten my day.

Quote of the day:

It’s not who we are that holds us back, it’s who we think we’re not.
~Michael Nolan

Verse:

And he said, My presence shall go with thee, and I will give thee rest.
Exodus 33:14

Monday, July 4, 2005 8:43 AM CDT

HAPPY 4TH OF JULY!!!!!!!!!!

I hope you all have a wonderful holiday. I am so thankful for this holiday and the freedom that we enjoy everyday. Please continue to pray for all the men and women fighting for this freedom.

I’m still resting up from vacation. Isn’t that funny? The heat is really getting the best of me. More than I can ever remember before. Plus my sun poisoning gets worse every time I even think about going outside.

How do you spend your 4Th of July? We, the boys and I, always go to Pegram for the parade and go to the park to just hang out and see friends. Then we are going to two different family things. Later we will make it back to Pegram for the fireworks. I just love living in a small community.

Well, I have to go get ready for the day. So you do the same. Remember your sunscreen.

Thank you for continuing to pray for my family and me. Your prayers bless us every day.
Please say a prayer for Bennie that he finds some more work. His projects are all about finished and is looking for more. He is a general contractor.

Quote of the day:

He stands fast as your rock, steadfast as your safeguard, sleepless as your watcher, valiant as your champion.
C.H. Spurgeon

Verse:

Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you.
1 Peter 5:6-7

Saturday, July 2, 2005 9:37 PM CDT

WE’RE HOME, WE’RE HOME!!!!!!!!!!!!!

I am so glad to be back in Tennessee. Yes, I got homesick.

We traveled all day. I am exhausted and headed to bed. I will post more tomorrow. I can’t wait to crawl into my own bed tonight.

I’m still dealing with my sun poisoning. Boy does it itch.

Quote of the day:

There’s no place like home!

Verse:

As one whom his mother comforts, so I will comfort you.
Isaiah 66:13

Friday, July 1, 2005 6:19 PM CDT

Come morning I will be Tennessee bound! This girl is ready to be back home. The vacation has been nice, but I’m ready.

It’s been tough trying to post while we have been here because there is only one phone line and it is in the kitchen. Plus, for a day or two I couldn’t get my computer to work.
So, yes, I will be glad for many reasons to get back home.

I’ve been very careful in the sun here because of all the medication I am on. But even so I got sun poisoning. Today Bennie and I stayed out of the sun for the most part. He took me shopping. What a guy!

Okay I will answer what some of you have asked…..
I’m back down to a 4 & 5. That’s about become my new normal for now. I’m so thankful it is down from 8 & 9. That is really tough to handle.

Bennie and I have talked a lot this week about my next CT scan and my treatment after that. We’ve even talked a little bit about the party that is coming up. I’ve got to get real serious with my planning.

Once I get back home I’ll be able to post easier. I hope you all are having a wonderful day! I’ll have stories from the vacation soon.

Please check by my guest book and leave a note to let me know you’ve been by.

Quote of the day:

God can pick sense out of a confused prayer.
Richard Sibbes

Verse:

Be strong and take heart, all you who hope in the Lord.
Psalm 31:24

Wednesday, June 29, 2005 9:25 AM CDT

Gosh, I was going to start my post a couple of days ago with SHARKS, SHARKS, EVERYWHERE!!!!! But my computer wasn’t working right. So this morning I thought I would give it another try. Thankfully it worked this time. I have missed not being able to post and read you emails and notes. I know every day what a boost they are to me. But the last few days when I had no way to read them…I was thankful for every single one this morning.

So back to the vacation. Nobody has been allowed in the ocean in a couple of days…due to “shark activity”. Yesterday (and now today) were cloudy, drizzling days.

Guess what I saw the night before last? A rainbow at sunset. There hadn’t been any rain so it was a “surprise rainbow”. It was absolutely breathtaking. Just gave me the most wonderful calm. Of course, it brought a smile to my face also.

Okay, so have you guessed where we are? Sharks are a clue.

We are in Panama City. The place we are staying (the same as last year) has a convention going on. This happened last year when we were here also. You would think we would learn our lesson. Well, maybe. That is if it weren’t 800 jr. high and high school cheerleaders here for cheer camp. The boys (big ones and little ones) are beside themselves. We are here with two other families. So we have 6 boys between the ages of 12 and 18.

Bennie chose this week to teach some more money management to Zach. Each day he gives Zach $20.00 to spend however he wants. It’s for his food and entertainment. If he decides to eat at the condo he can save the money. It’s made him think before he ask for Burger King. That’s because he wants to save this extra cash for a new phone. He’s already added up how much he should be able to save. Now he still goes putt putt with the other boys. Evidently that is worth the money.
Yesterday it was funny. Queen and I took 5 of the boys with us. They wanted to go to the mall and a surf shop. While we were at the surf shop we asked the guy there about a Mexican place. Zach said that he wanted Taco Bell. We went to the Mexican place though. I laughed with Queen after Zach ordered. I told her that he wasn’t even thinking about what his lunch would cost. Later on I teased him about it and he said that it wasn’t fair. He just wanted Taco Bell, but didn’t have a choice where we went. I told him he was right. That he could pay me for the cost of what his meal would have been at Taco Bell. He didn’t argue because he knew that was a better deal.

Now I guess you want to know how I am doing. You know any changes to my normal routines can really throw me for a loop. So when you have travel, different food, eating at odd times, and so on…it can just be bad news for me.

I am doing okay. My temp has been a little wacky, sporadically running 99 to 101. This morning it’s normal.

My new stent and I are getting adjusted to each other. That makes me much happier.

I am paying close attention to a few things that I am concerned about. No, Diva and Soul Sister, I am okay to stay for the days we have left. You both know the things I am usually concerned about.

I have written a bunch of you notes to mail while I have been here. But we haven’t found the post office yet. So you might get these after I have already gotten back to KS. But at least you will know that I was thinking about you.

Vacation is fun. We are all getting along great.
This morning we have enjoyed sitting on the balcony watching the ocean. We’ve seen lots of sting rays and dolphins. Thankfully no sharks…ha ha.
Not sure what we will do today, another overcast day. Maybe a movie.

So now you can do me a favor. Leave me a note on my guest book or an email to brighten my day. It’ll only take a minute and is sure to bring a smile to my face and maybe even yours.

Quote of the day:

Prayer is exhaling the spirit of man and inhaling the Spirit of God.
Edwin Keith

Verse:

Then you will call, and the Lord will answer; you will cry for help, and He will say: Here am I.
Isaiah 58:9

Saturday, June 25, 2005 5:48 PM CDT

Hi there!

I ran away from home. Actually the three of us ran away. Where we are at the sun is shining so bright. It’s a wonderful place to recoup. The boys are taking great care of me. I am very blessed and loved.

To be here with friends just makes it even better. It would be just about perfect if my “Soul Sister”, Diva, and Big Daddy were here.

I’m absolutely exhausted from the trip. It’s not Hawaii….ha ha.

Quote of the day:

Life can only be understood backwards but must be lived forwards.
~Chinese fortune cookie

Verse:

I am not alone, because the Father is with me.
John 16:32

I know I usually end my posts with the quote and verse. But I want to add this. I hold that verse very dear because no matter how tough the times have been or could be in the future, I know I am not alone. My Father walks this journey with me. He chose it for me.

Friday, June 24, 2005 9:46 AM CDT

Good morning!
It’s Friday!

I can see the sun shining brightly outside of my window. I love to see how the sunlight filters through the trees in the woods behind my house. It’s such a calming sight to me.

My new stent and I are still trying to get adjusted to each other. It’s still too early after the procedure to know how much changing it will help.

I have some errands to run. I’ll try to post more later this afternoon. I hope you all have a wonderful Friday and a great weekend!

Quote of the day:

“I don’t want to be a flame. I want to be a raging fire.”
~words from a Ginny Owens’ song

Verse:

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.
Romans 15:13

Thursday, June 23, 2005 10:39 AM CDT

Talk about getting the wind knocked out of you. That’s what just happened when I got my mail. BCBS had a little surprise for me with my HIPPA insurance. They bumped my premium up almost 250.00 a month!!! All I know to do is pray about it. I don’t have a choice in changing insurances because of my syndrome. But I won’t let that ruin my whole day.

I am still struggling with pain. But hopefully that will ease up. As soon as my body gets use to this new stent.

We’re getting closer and closer to July 20th, when I have my next CT scan. I don’t really have anything else to post just yet. I have to take Zach to basketball practice and then to his orthodontist (the best).

Please leave me a note on my guest book to let me know you stopped by….or I know, I know, some of you would rather send me an email and that’s just fine with me. Both of them would really brighten my day!

Quote of the day:

Enthusiasm moves the world.
Arthur James Balfour

Verse:

I call on the Lord in my distress, and he answers.
Psalm 120:1

Wednesday, June 22, 2005 10:18 AM CDT

Good morning to all of you!

I finally made it to yesterday. Now I am on the mend from it. It’s too early to know how much this may help my pain level. Notice I said may, not if. I’m thinking positively.

You know I always have stories to tell from my trips to Vanderbilt. So I won’t disappoint you this time either. The big thing was my age. Once someone find out how old I was they would ask someone else to guess. Nobody got it right. Bennie even teased the nurse at first and told her he was my daddy. I think she believed him too.

I had already told you they had called me to move up my procedure from 1:00 to 12:00. When I got there at 10:00 they said things were moving faster. So I ended up having my procedure at 11:00.

I made a definite decision yesterday. From now on I am going to be more assertive about where they can and cannot stick me for an iv. The reason being is that when you’ve had as many operations and procedures as I have you kind of learn which vein is good and which one just looks good. Yesterday I got stuck twice before she got the iv in. Then the place she put it was in my right wrist. I couldn’t stand to move it because it hurt. Of course, the resident waited until after my iv to ask me to sign consent forms. That was pretty hard and painful to do.

The procedure went smoothly and quickly. Bennie said that my urologist told him afterwards my stent was corroded. So hopefully this will make a difference. It made me even more sure of myself and how I feel. Stents are “suppose” to last 3 to 6 months. But mine always ended up having to be changed right at 2 months. I wonder why. Maybe it’s the medicines I have to take. I think I’ll ask when I call in today to set up my follow up appointment with him. I have other questions also.

So today I am just taking it easy. Not allowed to do much of anything.
But I can sit out on my porch and enjoy the sunshine and blue sky.

Thank you for all of your thoughts, prayers, and love. They are a huge comfort to me.

Quote of the day:

God is the owner; I’m the manager. Every resource, every blessing I have today is a gift of God.
John C. Maxwell

Verse:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11

Monday, June 20, 2005 8:41 PM CDT

Tomorrow is the day. I’m ready to just get there and get it over with. It usually takes a few weeks to get okay with the stent. I say get okay because you never forget that you have that foreign object inside your body. But you get use to most of it. That’s the reason I knew something was up with my current stent.

My pain level is still elevated. The doctor is not sure that changing the stent will even help. But I am hoping for at least a little relieve. If I could get back down to a 3 or 4 I could handle it. I’m use to being there.
The other thing is that I stay tired most of the time now. So I have to really think about what I want to get accomplished each day. Most days I want to do more than I have the energy to do. So it rolls over to the next day.

Okay, so here’s another little thing about me. You know I can’t always talk about FAP and all that goes with it. There is more to life than that. So here’s another glimpse of me. If you’ve read very many of my posts you know how much I love pretty blue skies, the sunshine, fluffy clouds…a beautiful day. I look into the sky to see that beauty every single day. It’s God’s gift to us, given to us every day for our enjoyment and appreciation. But here in Tennessee we have an added beauty…the mountains. Yes, I know some of you call them hills. But this Mississippi girl calls them mountains. I love to watch the sun set behind one of those mountains.

I probably won’t have time to post in the morning before I leave for the hospital. But as quick as I am able to I will. I’m thinking surely by tomorrow evening I will. Anyway, they moved up my procedure tomorrow. So I have to be there at 10:00 to get my iv hydrocortisone prior to my 12:00 procedure.

Just one more night to get through……
I hope and pray that this gives me a little relieve.

8

Quote of the day:

Ten thousand difficulties do not make me doubt.
John Henry Newman

(Yes, this is true. I don’t doubt a single step of this journey. May I be an encouragement and strength to others.)

Verse:

Cast your cares on the Lord and He will sustain you.
Psalm 55:22

Sunday, June 19, 2005 9:13 PM CDT

HAPPY FATHER’S DAY!!!!!!!!!!!

I hope all of you wonderful daddies had the best day ever!

I rested this entire day. Last night was another painful, long night for me. I couldn’t sleep at all between 3:00 & 5:00 this morning. When I woke up I knew that it was going to be another one of those days. The ones that are just tough to deal with. They’re tough because the level has jumped up so much. But tomorrow is Monday. I just have to make it through tomorrow and Tuesday morning. Hopefully changing my stent will help with some of the pain.

I’m excited about our celebration in July. I hope you all will be able to join my family and I to celebrate. Only 31 more days until my next CT scan!

Quote of the day:

Keep the faith!
Unknown

Verse:

I have fought the good fight, I have finished the race, I have kept the faith.
2 Timothy 4:7

Check out third picture. I put a different one in.

Saturday, June 18, 2005 10:54 AM CDT

It’s a sunny Saturday morning. I don’t really have much of anything to say just yet. I just didn’t want to leave the last post on any longer. It’s so hard for me to open up and share the pain. I would lots rather say I’m fine and go on. But I know that’s not fair to all the people that are praying for me.

Today I am looking forward to spending the day with my boys. Not sure what we are going to do yet.

I believe we have the okay for the location of my celebration. Now I just have to work on all the rest. Since it will be outside I am thinking an evening setting…maybe a little cooler then. So all you great party planners now is the time to help a friend out, email me or leave a note on my guest book.

Quote of the day:

Faith is not believing that God can.
It is knowing that God will.
~Ben Stein

Verses:

For we walk by faith, not by sight:
II Corinthians 5:7

Behold, I am the Lord, the God of all flesh: is there any thing too hard for me?
Jeremiah 32:27

Friday, June 17, 2005 10:12 AM CDT

Gosh, another hard day and night yesterday. But thank the Lord I am feeling a little better as far as the nausea today. The pain is still were it was (8). I’m just so happy not to be feeling so deathly sick. Bennie was concerned last night that I was headed for the hospital. Because every time I get sick like that I usually ended up there due to dehydration.

So I just need to tread water so to speak until Tuesday. Then we will determine what needs to be done after the stent is replaced.

I can’t thank all of you enough for your calls, emails, notes, prayers, and so much more. All of those things really add sunshine to my day. I am blessed by your love and friendship.

Today is Friday. The start of the weekend…and Father’s day on Sunday. I am so thankful for my dad. I love you Big Daddy!

Quote of the day:

You only live once - but if you work it right, once is enough.
Joe E. Lewis

Verse:

While I live will I praise the Lord: I will sing praises unto my god while I have any being.
Psalm 146:2

Thursday, June 16, 2005 2:26 PM CDT

Last night was a long, long night. I almost posted again around 1:30 am. But I was hurting too bad to put my thoughts together. My level seems to have increased to a steady 7, 8 and sometimes (like last night) a 9. If I could just switch out my middle for a nice healthy one…boy, if it were just that easy. But again, I will say…not my time but His.

My urologist called me in today. He scheduled me to have my stent replaced on Tuesday. He’s hoping this will help some of the pain. But we both agreed that it is a combination of issues. The biggest being the desmoids and what they are pressing on. So now I just have to make it through to Tuesday.

I don’t know how it looks in your corner of the world, but here it is a fabulous day with the prettiest, fluffiest clouds you’ve ever seen. Go outside and just look at what God made for our enjoyment.

Quote of the day:

Life is not measured by the number of breaths we take…
But by the moments that take our breath away.
George Carlin

Verse:

Wait for the Lord; be strong and take heart and wait for the Lord.
Psalm 27:14

Wednesday, June 15, 2005 2:07 PM CDT

I am so thankful for air conditioning today. Yesterday afternoon our air stopped working in the house. It was hotter in our house than outside! I was afraid the compressor was burned up and so was Bennie. But my fix-it man, Bennie, fixed the problem and today we have air again. YEAH!!!!

Please say an extra prayer for me today. I’m having a really tough time with the pain. You know when I stay at a steady 3 or 4 I can function like normal. I’m use to being there everyday. But it’s the days that I’m at a 7 or 8 that really wear on me. Today I’m at an 8. I just wish I could wave a magic wand to dissolve these monsters. But it’s not in my time, but His. So I will continue this walk and try not to be a whiney baby about it.

Please also say an extra prayer for Zach. He is having a hard time dealing with this again. He and I had a very good talk yesterday. I told him I felt like he held me at arms distance lately. He admitted that he had been doing that. Because he felt like every time he opened back up again I ended up in the hospital or got not so good news from a doctor. I told him I plan on sticking around for a while and wouldn’t he hate to miss a day of loving his mama because of the fear of losing her. We hugged and it was wonderful. I am very blessed with such a sweet, caring child.
He had his best friend spend the night with him last night. This morning I have enjoyed listening to them play around and just act like goofy 13 year olds. It does my heart good.

Thank you for your notes on my guest book and the emails you have sent me. They really do brighten my day. Especially on days like today.

Quote of the day:

Hope sees the invisible, feels the intangible and achieves the impossible.
-anonymous

Verse:

Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12

Tuesday, June 14, 2005 9:56 AM CDT

Dusty has been on my mind. Some of you didn’t have the chance to meet my younger brother. He was killed in a motorcycle accident when he was 24. Zach was 2 ½ years old at the time. So he doesn’t have any memories of Uncle Dusty. Last week at Zach’s basketball camp I thought about Dusty and how much he would love to go to Zach’s games. They would be huge buddies because they are so much a like.

I always talk about looking out my window while I am posting. I look to see how the sun is shining through the trees or if there is any sun on some days. Behind my house is beautiful woods. Looking into the woods makes me remember playing in the woods with Dusty as children. Yes, I was a prissy little girl. But I could hang with my brother too.

I miss him everyday.

Today is Tuesday, my second day on different antibiotic. I am hoping to get this UTI behind me. The combination of things has just gotten me down. But hopefully I will be feeling better soon.

Today is Tuesday and it’s going to be a pretty day. A great day! I’m thankful for today. If you have a moment please leave me a note on my guest book or send me an email. Your notes and emails bring a smile to my face. Thank you for continuing to pray for my family and me.

Quote of the day:

What makes us special is the signature of God on our lives.
Max Lucado

(I know I used this quote yesterday. I just like it so much I wanted to use it again today.)

Verse:

Since you are precious and honored in my sight, and because I love you,
Isaiah 43:4

Monday, June 13, 2005 4:26 PM CDT

The sun is shining!!!!!!!!
How wonderful is that? Especially after such a rainy weekend.

I made my trip all the way to Cool Springs to see my favorite doctor for follow up. Remember I said that I would change locations but not doctors?

Guess what? He had good news for me…..the biopsy he sent off ended up just being extra tissue in my small bowel…not a polyp. Now that’s good news. He told me he had expected to find polyps when he scoped. So this is really good news. It was about time for some too, don’t you think? Yeah, me too.
The ampulla thing we are just watching for now. He said that I had such a tough time after he removed the end of my ampulla so he wants to watch this area. He will scope me again in 6 months and biopsy it then if it’s not any better. So, unless anything changes, I don’t have another appointment with him until December!

I talked to him for a little bit about the chemo I am taking. Of course, I mentioned my wish and hope for my birthday, “shrinkage”. He joked with me that George Costanza says cold water causes shrinkage. I enjoy being able to laugh and joke in the midst of this.
I told him Bennie and my thoughts about if I don’t have shrinkage in July. We are going to talk to my oncologist about changing to something else. He said that my oncologist had access to some clinical trials and other options we could try. I asked him my “question”, “If this were you, what would you do?” He said that I am young. He would be more aggressive, in hopes of getting me a better quality of life. So we will see what July brings.

I have got to get serious now about the party in July. I hope you all come, just to hang out and enjoy being together. I’ve got some surprises I’m working on for the party. I’m so excited!

Five Things I’m Thankful For Today on June 13, 2005

1. The sun shining
2. The good news
3. Air conditioning
4. Your notes and emails
5. My family and friends

My list is lots longer. But those are the first 5 things I thought of right this moment. You know even though all this stuff is going on inside of me I am blessed. God gave me an okay outside. I am forever thankful for that gift. The stuff I am going through right now is just for a “season” as my “Soul Sister” said to me earlier today. So I will keep walking this journey with my Father, hand in hand. It’s comforting to my heart, spirit, and soul.

Quote of the day:

What makes us special is the signature of God on our lives.
Max Lucado

Verse:

And surely I am with you always, to the very end of the age.
Matthew 28:20

Sunday, June 12, 2005 10:56 PM CDT

You know I have to post on my favorite day.

The weather the last couple of days has pretty well matched how I am feeling. I am hoping to feel better once I get a new antibiotic tomorrow.

This morning I woke up and struggled to get myself going…just felt so yucky. I didn’t make it to ss but the Crowes were there for church. I love our church. Our family there is such a huge blessing to us.

You know how I always talk about answered prayer. Everyday it happens. Today, once again answered. I got a surprise at church today. My shoe buddy, #15’s boss, came to our church today. That was a wonderful surprise for me. It really brightened my day, more than she knows.

Everyday I look for the smallest of gifts to be thankful for; a beautiful sunset, the way the sun shines through the clouds, Zach’s smile, butterflies and rainbows, and on and on. Sometimes at night when I am having trouble sleeping I talk to God about how thankful I am for everything in my life. And do you know what happens? I fall asleep before I can finish because I am so blessed. The next time you are having trouble sleeping try it out. I’ve had lots and lots of practice. Unfortunately, staying asleep is my trouble.

In the morning I have to go for my follow up appointment from my upper scope. I will let you know what the doctor has to say tomorrow.
It’s getting late. I know this post is short. But I will post more when I get back from the doctor.

I hope you all had a wonderful weekend!

Quote of the day:

Be faithful to that which exists nowhere but in yourself.
Andre Gide

Verse:

Thou art my hiding place and my shield: I hope in thy word.
Psalm 119:114

Friday, June 10, 2005 10:33 PM CDT

I ran away for a couple of days to my parent‘s house. Zach, his best friend, and me left yesterday to spend the afternoon with them. We were having so much fun that we decided to spend the night. My mother and I just soak up every minute that we are together. The time flies by too fast. The boys had themselves a time swimming, drinking as many Cokes and Dr. Peppers as they wanted, and eating like teenage boys do.
We laughed and just enjoyed being together.
Being able to spend time like that with my mother is so special to me.

Okay, now I will tell you that I got my results back on the still “Sleeping Beauty”. Yes, still snoozing away. Since I have another UTI I have to double my hydrocortisone dose for a couple of days. Then I’ll go back to my regular dose until I finish my antibiotic. After I finish it my doctor wants me to try taking half my dose. Hopefully this will help to wake it up. The end of June will be a year since the adrenalectomy. He will check my cortisol level again in 3 months. By then I hope it shows signs of waking up. Because it will be 3 months short of 18 months since the surgery. The doctor told me that it could take a year to 18 months for it to wake up. So now that I am at the year mark I am tapping my foot…anytime now….wake up.

How do I feel tonight?………

My level tonight is a 7. I haven’t posted that in a while. I had gotten so use to being at a steady 3 or 4 everyday that it became my normal day. I learned how to deal with it. But now that it’s bumped up it gets tough at times. Plus, I get tired pretty easy now.

Hey, I want to post about happy stuff………like my birthday/celebration!
Diva and I have talked about some ideas. You know it’s going to be here before we know it. I’m thinking of a couple of different places to have it. Of course, I would like for it to be somewhere in Kingston Springs because I am such a KS gal. I love my community and am so thankful for it and the wonderful friends here. Hopefully those of you that don’t live here will still make the trip out here for the celebration.

Bennie asked me what I had in mind. He said that he imagined that I wanted something like the benefit day that you all helped with. I told him no. I just want to be with all the people that have supported, prayed, and cared for me and my family. I want to celebrate reaching 40 and hopefully “shrinkage”. Forty, in my book, is something to celebrate. I am so excited about making it. So, please, no gag gifts or over the hill things. It’s a celebration of love and life. Lets have a lot of fun together.

I had been playing with the idea of going to Chicago for a couple of days with my parents this Sunday. You see, every year at this time I have always gone with them for work. We have to go there for a National trade show called NeoCon. I haven’t gone in the last few years. I had really hoped to be able to go this year to see some of my buddies I haven’t seen in a while. But I have my follow up appointment from my upper scope on Monday. I can’t miss that. The doctor will have my pathology results.
Plus, I am SO tired from the first 3 days of this week….taking Zach to basketball games from 1:00 until 9 and 10:00 at night. Maybe I can go next year.

To all of you traveling this weekend and the first of the week to Chicago I pray for your safety of travel. Don’t forget your comfortable shoes….by the end of those long days in the showrooms even those aren’t comfortable anymore.

Check out my guest book and leave me a note. It looks like tomorrow is going to be a rainy day. So I sure would love a little “sunshine” from you.

Quote of the day:

You never know when you are making a memory.
Ricky Lee Jones

Verse:

Love the Lord your God with all your heart and with all your soul and with all your strength.
Deuteronomy 6:5

Wednesday, June 8, 2005 11:47 AM CDT

I don’t want to go somewhere if I know that you’re not there
Because I know the me without you is a lie
I don’t want to walk that road
Be a million miles from home
Because my heart needs to be right where you are

Chorus to “I Don’t Want To Go” by Avalon

A few days ago a friend asked me how I handle this everyday. I’m asked that question and the “do you ever question why” question quite often. My answer, I haven’t ever questioned why this is happening to me. I have always know deep inside that it was all a part of this journey. Now I’m not a martyr, I do have tough days, days that I’m a cry baby, days that the pain gets the best of me. But it’s all a part of this journey. I don’t question God’s plan.

Yesterday I gave you a glimpse of my determination and belief. That determination and belief has brought me through many valleys. The words to the chorus I posted today are so meaningful to me. I listened to this song the whole way home from Vanderbilt this morning. Oh yeah, by the way, yes, this morning was the morning I had to go in for my cortisol check and to see my endocrinologist. I want to stop right here and put in that I am so blessed to have such wonderful nurses. They are the best and sweetest!
I had blood drawn for my check and to check my vitamin D level. Plus a urinalysis. I told him I’ve been running a fever and about the pain. Guess what? What I already knew was true….another UTI. So I have to call my urologist to let him know. Not sure if he will want to change the stent or what. I do know that having the stent plus the different medicine I am taking right now make me more susceptible to UTIs.
So, I am waiting to hear the word about “Sleeping Beauty”. This month will be a year since my adrenalectomy. The doctor said that it could take a year to 18 months before it wakes up. Any time now would be just fine with me.

This afternoon is another basketball afternoon for us. Zach had practice this morning and now we are headed for double elimination tournament. Not sure what time we will make it back home.

By the way, did you notice that my page has viewed over 20,000 times now! Isn't that something? Thank you to all of you that share this with me. You enrich my life and boost my spirits. How could I not have a smile on my face and in my heart with friends like you?

Quote of the day:

It is good to have an end to journey towards - but it is the journey that matters, in the end.
Ursula K. Leguin

Verse:

Now I am about to go the way of all the earth. You know with all your heart and soul that not one of all the good promises the Lord your God gave you has failed. Every promise has been fulfilled; not one has failed.
Joshua 23:14

Tuesday, June 7, 2005 10:25 AM CDT

I was just TOO tired yesterday by the time I got home. The day ended up being pretty busy. I had my doctor appointment in the morning. Then Zach had 3 basketball games after lunch. We didn’t get home until around 9:30. Let me just tell you, those bleachers are not my friends…ha ha.

So, you want to hear about yesterday’s appointment? Good appointment, no new news or help to make things better. But that is because we are doing what is the best for right now. I am so ready to have my CT scan. I want and am praying for shrinkage. I told Bennie this morning that I was trying not to think that the tumors could be growing with the increased pain in the last few days. Plus, we had a talk about my pain medicine. I realize I can’t continue to struggle with it. I don’t really know why I fight it so hard. I guess it’s just a part of my determination. That’s the way I have gotten this far…that and most of all the love and believe of God in me. Every time I have been faced with surgery or an obstacle of any sort concerning this syndrome I have just charged through with blinders on. I just get myself from Point A to Point B. The in between a lot of times is just a blur.

I wasn’t sure what I would share with you today. But this story about the journey fits right in with the way I get from Point A to Point B.

Right before Zach turned 3 years old I had to have my first desmoid surgery. In order to give you the whole picture of what I went through I have to share what lead up to that surgery. I had to have a C-section with Zach. Back then I had no clue what that would do to me. I had no clue of all the other things that could happen with this syndrome. I thought I had a handle on it…all I had to do was see my doctor every 6 months for scopes and live could go on merrily.

For 2 ½ years after Zach was born I kept telling my GYN that something just wasn’t right with my scar. It wasn’t healing right. You see I had already had my abdomen operated on at 15, cut vertically. So I knew that cutting horizontally should heal easier. But it was lumpy, kind of hurt, even 2 years later. Back then I was one of the people that thought the doctors had all the answers. Since then I have realized that they are people practicing medicine. Yes, they have been to school for many years to be educated for this career. But this career is not an easy one to pursue. When it comes down to it, we are in charge of our own care. God gives us an instinct. If you don’t feel that something is just right…listen, it’s your instinct, given to you by God.

Back to the story….

My GYN sent me to several other doctors because she wasn’t sure what this “scar tissue” was. She finally sent me to a surgeon who told me that I had a desmoid tumor. I had no idea what that was. I thought, no I just have scar tissue. Don’t tell me I have let this grow in me for 2 ½ years thinking it was nothing. Then the other shoe dropped…..

He talked to me about the surgery he was going to do on me. Short version….remove the skin from my stomach, remove my stomach muscles and tumor, scrap the pubic bone, skin grafts, bone grafts……I was floored! Blindsided. So I went to see my colon rectal surgeon who was a friend also. We talked about everything, then I asked him the question I like to ask doctors. “If it were your wife where would you go? Would you have it done here?” He told me he would go to Oschner Clinic (New Orleans). That’s where I had my first surgery, so I was comfortable with going there.

The surgeries I had there were not as drastic as what the doctor wanted to do here. They did remove a three inch band of the skin from my stomach, the lower right & left third of my rectus muscles and the tumor, scrapped the bone, and then they started the reconstruction of my abdomen. They put mesh where my rectus muscles had been. For added support they took one of the muscles from my left quad (thigh) and pulled it across the mesh. This meant I would need a lot of physical therapy. I remember going to PT there, the therapist told me that I would always walk with an uneven gait (limp) because of this surgery. But PT would help me some. Let me just tell you, that wasn’t even an option or a thought to me. I had an almost 3 year old and his mama was having to learn to walk again! When I got to come home from New Orleans I continued PT here. My therapist here told me the same thing about what physical therapy could and couldn’t do for me. I remember when I was finally released from PT everyone there cheered. They were amazed that I had absolutely no limp!

Since then I have had to “walk” for numerous doctors. They have all agreed that I don’t have an uneven gait. But I work hard at it. When I am tired, if you know me well, you will see it.

For as long as I can remember I have treated this syndrome as a game. I say that because every time I was given like an amount of time I would be in the hospital or how I would recover, it would become my goal to beat it. Now the last 2 ½ years I haven’t been able to do that. I’m just proud to be where I am.

So now you know about my third major surgery, the first desmoid surgery.

*******************************

The sun is shining brightly. Zach has 3 basketball games again today. Another long day on those bleachers. I’m going to make sure I have my cushion seat today.

My “Soul Sister” is back home again. I am so happy you’re back.

Today is Tuesday. What are you doing? Are you still thinking about the chorus to the last song I posted? I hope so, actually I hope you are doing something about it. Don’t wait until tomorrow. We aren’t promised that day. So make today count!

Quote of the day:

Don’t just live the length of your life - live the width of it as well.
Diane Ackerman

Verses:

My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.
Psalm 62:1 & 2

Don’t forget to leave me a note on my guest book. Let me know you’ve been here. I know some of you will email me and that’s great also.
Doesn’t the new side border kind look like a rainbow? It’s the closest I could get to a rainbow.

Saturday, June 4, 2005 9:25 AM CDT

This is your life, are you who you wanna be?
This is your life, are you who you wanna be?
This is your life, is it everything you dreamed
that it would be when the world was younger
and you had everything to lose.

chorus from “This Is Your Life” by Switchfoot

The words to this chorus were on my mind this morning. They are so great. This is your life, are you who you want to be? If not, why not? This isn’t a dress rehearsal. Our lives are playing out each day. Take advantage of today because we are not promised tomorrow. To not be who we want to be and who God knows we can be is an insult to Him. He has great plans for each of us.

Doing this journal is kind of funny to me. It’s different for me to be trying to post about how I’m feeling, what I’m thinking, and all the other stuff that goes with this. I know by opening up though it helps all of you know what and how to pray for me and my family. Because of that and the fact that I am doing this for Zach, I am committed to sharing this journal with you.

You ask how I am feeling today? I feeling exactly like I did when I was getting sick with the upper respiratory infection and UTI. Same stuff. I’ve been watching and waiting for the last couple of days, just monitoring. If I’m not better Monday I will let my doctor know. Maybe it will go away.
Plus, I am having trouble with the desmoids. They are making themselves known. I have to drink this medicine every day now, not once but twice a day, to help me out. Because the desmoids are compressing my ileum (lower part of small intestines) I have trouble with that area. Plus there is the wonderful stent in my right ureter because of the other desmonster there. But even after saying all of that I will add here that I am thankful, yes thankful that I have these medicines and procedures to help me out.

I’m looking out my window and can see the sun shining brightly through the trees. It’s such a beautiful, calming sight to me. It’s Saturday! Today is going to be a good day. I claim it to be. Plus, tomorrow is my favorite day! I’m looking forward to ss and church. I really missed it last weekend while we were at the wedding. It’s just such a wonderful boost to my spirit to be there with my friends worshipping.

Okay so here’s what I want you to do…..
Think about the words to the chorus at the start of my post. Make today count. Don’t wait for tomorrow. This is your life, are you who you want to be?

Quotes of the day:

Some things have to be believed to be seen.
Ralph Hodgson

Remember that you are unique. If that is not fulfilled, then something wonderful has been lost.
Martha Graham

Winners believe in their worth in advance of their performance.
Denis Waitley

Verses:

Let the beloved of the Lord rest secure in him, for he shields him all day long, and the one the Lord loves rests between his shoulders.
Deuteronomy 33:12

The Lord will stand with me and strengthen me.
2 Timothy 4:17

God is able to do exceedingly abundantly above all that I ask or think.
Ephesians 3:20

Thursday, June 2, 2005 9:55 PM CDT

Well, I am still recouping from my procedure on Wednesday. I’m definitely going to have to have a talk with my doctor. It feels like he cold cocked me in both jaws! I haven’t had that happen before. Maybe I clamped my teeth together…right after I looked at him…right before he gave me the extra shot of medicine. Who knows.

My throat is feeling a little better today. At least this time I didn’t wake up sounding froggy. Sometimes that happens to my voice for a day or two afterwards.

Thankfully I called my doctor’s office today to reschedule my follow up appointment that the hospital gave me. I say thankfully because the nurse looked and told me that I wasn’t even on the schedule. So she made me an appointment for a week from Monday. So that cuts my appointments down to three for next week.

On to other thoughts and stuff…….

Don’t forget to look at my guest book. Maybe even leave me a note. So many people have written me such wonderful, uplifting notes…just notes straight from their heart. Thank you for sharing with me.

I am sure I will be feeling better tomorrow. So I will return calls, I promise. I just haven’t felt like talking because of the nausea.
I’m tired for now. No more words for now.

Good-night.
Sweet Dreams.

Quote of the day:

Tough times don’t last.
But tough people do.
Unknown

Verse:

It is God who arms me with strength, and makes my way perfect.
Psalm 18:32

Wednesday, June 1, 2005 6:49 PM CDT

I am back home once again……

I had my upper scope done today. I will see that doctor in a week to talk about the results. He did see one polyp in a different place that he biopsied. Plus, he said something about my ampulla. I was too loopy to remember. The big laugh today was (this is from my doctor), he was getting ready to start and I was still looking at him. So he gave me a little more medicine. Of course I don’t remember this. I do remember the nurse starting my iv and feeling the medicine relaxing me. They sprayed my throat with that NASTY stuff before I was out though. Yuck!!!!!

Let me help any of you out here that have a hard time with anesthesia. Ask for the patch. It goes behind your ear and works wonders. Usually when I have this type procedure I do okay. But evidently he gave me just enough to be sick afterwards. I also, had a tough time waking up. I woke up enough to get dressed and get to the car in a wheelchair. I slept the whole way home and more once I got there. I don’t think it will be very long before I am snoozing again.

The other reminder of what was done today….very sore throat. But that will go away in a day or two.

Oh, for those of you that have emailed me, called me, or sent me a note to check on me, thank you so much for your concern. As I have said in the past, whenever I don’t post there is a reason…..most important reason….words just aren’t there yet. That’s not the case for yesterday. Caringbridge was updating their website so it was closed to postings yesterday evening.

Here’s a little thought I had today. There are many twists and turns on life’s journey. Sometimes on this journey we fall down. It’s okay to cry…..as long as we get back up and continue the journey.

This thought comforted me today. Because there are days that are tougher than others for me. I do have my “Cry Baby” days. I know that it’s okay. Because to have the rainbows, you have to have some rain.

Well, today is June 1st! On July 20th I have my CT scan. It’s going to be here before we know it. Next week I have my early morning appointment to have my cortisol level checked and see the doctor. Hopefully, “Sleeping Beauty” will be showing signs of waking up.

I am going to stop here for now. I hope you all had a wonderful day. Please leave me a note on my guest book to brighten my day!

Quote of the day:

Our greatest glory comes not in never falling, but in rising every time we fall.
Unknown

Verse:

For we know, brothers loved by God, that he has chosen you,
1 Thessalonians 1:4

It’s funny that I had the thought about the journey and falling. Not even knowing the quote when I wrote it.

Monday, May 30, 2005 5:03 PM CDT

“I’m back. I’m tired. It was good. I love you.”

That was the message I left for Diva and Big Daddy when I landed in Nashville Sunday afternoon. Both weddings were perfect for the couples. Check out my pictures…new ones from the wedding.

I am still exhausted today though. Between the company here before our niece’s wedding, traveling to Josh’s wedding, being sick, the stress of the ex, and so on; I am just wiped out! My emotions are everywhere. But I know it’s because I am so tired. I told Bennie and Becky that I was really sick of taking all the pills I have to take in a day and that if I didn’t have shrinkage in July I was going to stop taking them all. Now that is “Pouty Stephanie” for you. That side only comes out every blue moon. Usually when I am super tired. Also, when I am faced with things I use to do so easily in the past, that aren’t so easy now.

I’m so happy to be back home…my “safe zone”. That makes everything better.

Like I said at the beginning of the post, both weddings were perfect for each couple. They were completely different from one another. The only thing they had in common was that they were both outside. I wish both of these sweet couples a lifetime of happiness and love.

Okay, so we are on the countdown to the “Double Celebration” in July. I hope you all have your party shoes dusted off and ready. Big, big party. July 20th is when I have my next CT scan. Then I see my oncologist the next day. He set this up so I would know before my birthday.

This week I have to go for my upper scope. Same doctor, different hospital. Please pray that everything is clear this time and that my pancreas stays calm.

By the way, Thank you, thank you, for all of your emails and notes. Of course, as usual, the emails out numbered the notes on the guest book. I came home to 250 emails from my wonderful friends! Thank you for brightening my day. I feel very loved. I am so thankful and blessed by your love and prayers.

Quote of the day:

It is such a comfort to drop the tangles of life into God’s hands and leave them there.
Unknown

Verse:

Be still and know that I am God.
Psalm 46:10

As simple as this verse is, it speaks volumes and just comforts my soul. “Be still and know that I am God.” How incredible!

Please check out the new pictures and leave me a little piece of sunshine on my guest book or send it in an email.

Friday, May 27, 2005 0:49 AM CDT

It’s been an extremely busy week…wedding week. One down and one to go. Our niece got married tonight. It was a beautiful wedding. Now we are headed to Josh’s wedding.
I have to admit I am exhausted and I know it’s a combination of being sick, running crazy with the family in town for the wedding, and the medicines. I’m telling you, it’s a tired like I’ve never felt before. So tired I could almost fall asleep standing up. In fact, I would be afraid to close my eyes because I might fall asleep and end up falling down. Another thing also is that my legs hurt, like the hurt when you’ve been walking all day (flea market, theme park, you know).

I don’t know if I will have access to a computer for the next couple of days (until Sunday after lunch). Of course, I will post if I do. If not I will post as soon as I get back here. I hope you all have a wonderful weekend.

By the way, it sure would brighten my day if you would leave me a note on my guest book or send me an email. What a wonderful surprise to get back to.

Quote of the day:

The only way of finding the limits of possible is by going beyond them into the impossible.
Arthur C. Clarke

Verse:

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose.
Romans 8:28

Tuesday, May 24, 2005 9:09 AM CDT

Yesterday was the start of “Wedding Week”. Our niece is getting married on Thursday. Then Josh is getting married on Saturday. With Josh’s wedding there is the whole divorced family situation. Could be a little stressful. Might need extra hydrocortisone to breeze through that.

Yesterday I saw my GI doctor at his new office. When he told me a few months ago he was leaving Vanderbilt, I told him I would change locations but not doctors. Because I’m not a “see you once a year for a physical” gal. No, kind of unique.
I am still having a tough time with this respiratory funk. He decided to do a chest x-ray. It looked good. He said to go to my internist if I continued to get worse. Most likely it is a viral upper respiratory infection. So it will have to run it’s course.
While I was there his nurse set me up for my EGD, that’s my upper scope. It’s time again. I am praying that my ampulla is clear this time. Also, that my pancreas doesn’t get fired up again. I have this done next Tuesday, June 1st.
It will be strange because I have to go to Williamson Medical Center for this one. I’m so use to going to Vanderbilt. Oh well, like I said, “I will switch locations, but not doctors.” He is one of my favorites.

This morning I have to see my orthopedic doctor. She’s going to check out the cyst and I guess set me up with sports medicine. I’ll let you know when I get back.

Please say a prayer for a friend of mine’s cousin. Please pray that he opens his heart to God. He is terminally ill and hasn’t accepted Christ. She and I have talked and talked about this. How does someone go through that and not have a hold of God’s hand? I know I’m not letting go of the hand I’m clinging to. I’m thankful for His hand and love everyday.

Quote of the day:

It’s not the amount of time you devote, but what you devote to the time that counts.
Edge Keynote

Verse:

Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
James 1:12

Sunday, May 22, 2005 9:39 PM CDT

When peace like a river attended my way
When sorrows like sea billows roll
Whatever my lot thou has taught me to say
It is well
It is well, with my soul

It is truly well with my soul. This song brings tears to my eyes. I feel this from the depth of my soul. I don’t have fear of the unknown. My journey has been decided.
It is well with my soul.

I will post more tomorrow. I want these words to stand out. Please re-read the top. I pray that you can feel this too.

Quote of the day:

Faith is a force that is greater than knowledge or power or skill, and the darkest defeat turns to triumph if you trust in God’s wisdom and will. For faith is a mover of mountains - there’s nothing man cannot achieve if he has the courage to try it and then has the faith to believe.
Helen Steiner Rice

Verse:

Devote yourself to prayer, being watchful and thankful.
Colossians 4:2

Friday, May 20, 2005 1:52 PM CDT

It’s Friday! Only one more week of school left for Zach as a seventh grader. I can’t believe how fast the year flew by. He is so excited about being in eighth grade next year.

Last night and this morning we had some nasty weather in KS. But as I sit here typing I can see the sun shining through the trees. What a wonderfully calm site to me. On Channel 5 this morning the sky cam picture showed a rainbow in downtown Nashville. When I saw it I just smiled, felt like it was a present for me, a little bright spot on a rainy morning.

Hey, I just want to say thank you to each of you that have emailed me or left notes for me about your ABC thankful list. I have enjoyed reading what your list are. So I decided today I would post my whole list.

A - my right “Sleeping Beauty” Adrenal gland
B - Bennie - my soulmate
C - the loving Care of my friends and family
D - my Dad, I’ll always be his little girl.
E - Easter and what it means
F - Family and Friends.
G - my Girlfriends
H - Hawaii
I - Infra gang - I love you guys! You’re the best!
J - my Journey - every step
K - Kind words of a friend
L - The Love of my family
M - my Mother “Diva” She is the best!!! I love this woman. She is my hero.
N - my Name
O - The Lord’s Omnipresent
P - Prayers
Q - Queen, yes, very thankful that God brought you into my life. We have so much fun laughing together.
R - Rebecca Marie, my baby girl
S - My Salvation
T - Talent, the talents God gives each of us
U - Unconditional love of God and my family
V - Vanderbilt, yes that’s right. It’s so wonderful to be able to be home, see my drs., & be cared for. In the past I’ve had to travel so far from home.
W - Worship (actually Praise & Worship)
X - X-rays, CT scans, and all the other tests that help my drs. take care of me.
Y - Yesterday
Z - Zachary, my baby boy.

There’s my list. Some letters require a little more thinking. If you haven’t tried this, take a few minutes. Let God know what you are thankful for. Yeah, He knows our every thought. But you know how you feel when your child says thank you for something out of the blue. Just imagine how He feels. Just imagine that simple act putting a smile on His face.

I wish you all a wonderful weekend. I am still battling this infection. But I am a tough girl.

Quote of the day:

People who matter are most aware that everyone else does, too.
Malcolm Forbes

Verse:

Now faith is being sure of what we hope for and certain of what we do not see.
Hebrews 11:1

Thursday, May 19, 2005 2:20 PM CDT

Well, let me just fill you in on the past two eventful days. First of all, I got to have lunch with a sweet, sweet friend. We talked and talked, got caught up. As I was driving there to meet her I thought about how wonderful God is and how He takes care of things…me. You know I had said that I was in one of the low spots? Usually there is a reason for it and there was. I didn’t know just yet what. I just knew I wasn’t feeling good. But He was taking care of me. My friends have been so good to me. I am forever thankful that He brought you, each of you, into my life. Each one holds a special place in my heart and has a strength that I am blessed by.
I have a standard joke of being scared the weeks I don’t have an appointment or something at Vanderbilt. Now it’s not because I have some weird connection. Actually it’s because I usually end up there seeing a doctor (sick) or being admitted (really sick). This week was no different. After my wonderful lunch I called the doctor’s office because I just haven’t felt very good and have been running a low grade temp since the weekend. My doctor was out of the office for the afternoon. But one of her associates saw me. I’m not the kind of patient you want to get thrown into….too many “unique” things going on. The medication alone is enough to deal with. This doctor had blood work drawn and urinalysis. Surprise, surprise, infection. They are now waiting for the culture to see what it is resistant to. This seems to be a big deal with me now since I have had MRSA. Yesterday morning I thought to myself, “You just need to be tougher. Get over it.”. Today, I actually feel even worse (by a long shot) than yesterday. So I’m glad that I am so in tune with my body and how it feels. Now the how it feels is a whole other topic for today.
My thoughts on that…..a stranger to me. What once worked so effortlessly, or so it seemed, on most days feels like an alien lives inside me now. Things I have to think about that others don’t. Things that I thought were normal concerns or worries because I have always lived my life “normally”. I have now found out in the last few days that a handful of my friends have never been concerned about these things. Because for them it isn’t a concern. For me, the wrong diet combination can be a very bad thing. So see why eating is such “homework” for me. Gone are the days where I had no thought about what I ate. But you know, that is livable. I have had times in the past 2 ½ years where the simple act of eating was too much. Thrush made it impossible. So I am thankful to be here today. That “homework” isn’t too much for me.

Today has been a crazy day! I took Zach and his buddy to school this morning. Today is Olympic Day for them. I stayed for the “Opening Ceremonies”. Then I decided to leave for a while, until lunchtime. But guess what? My car wouldn’t start. It would crank, but not start. This had happened before and the roadside assistance guy walked me through what to do and it started then. Today that trick wasn’t working. I thought, “Well, at least I’m close to home.” Still I don’t know about you, but I just don’t like being stranded like that. Of course, not on the side of the road, but I mean to be without a vehicle to get around, be in control. I waited there and tried a few more times to start it, no luck. Zach actually came out and tried to help. Sweet baby that he is. Then as he was walking back into the school he turned around and said, “Mama, call me if you need me.” Such a big boy. You know they grow up much too fast, in the blink of an eye.
When I called roadside assistance this time the guy said what I didn’t want to hear. “It’s going to need to be towed in.” Yuck!
But let me skip over some of that and get to the next part. After quite some time and a little frustration my car started! Yea!!!!!
Bennie had told me if it started to drive it directly to the dealership because it was undependable right now as far as he was concerned. He said that it was too hot outside for me to be stranded on the side of the road.
So, I have dropped my car off. The service guy believes it is something that doesn’t take long to fix or cost an arm and leg…just half of the arm…ha ha.
Now I just have to wait for the call…car less until then.

Okay, so enough about all of that. I have something to share with you that I think is really cool. Take time today to be thankful. Oh I know you are thankful everyday. Because that is the kind of friends you are. But this is an extra step. Think of something you are thankful for for every letter of the alphabet A-Z. Let me hear some of the things you are thankful for. Share it with me in my guest book or send me an email. Just something to leave you with…something to think about.

I’m thankful for….
A - the appearance God has given me.
B - Bennie
C - my car
D - my Dad

……..

That’s the start of my list for today. What’s yours? Some letters are tougher than others.
Anyway, you know how you can brighten my day….surprise me with an email or note on my guest book. It’ll only take a minute.

Quote of the day:

“I must go through the valley, to stand upon the mountain of God.”
words from “Mountain of God” Third Day’s Mac Powell

Verse:

Be strong, and let your heart take courage, all you who hope in the Lord.
Psalm 31:24

Wednesday, May 18, 2005 9:20 AM CDT

What are my words for this morning………

I’m tired! I’m so tired. But at least now I know for sure it’s the combination of medication I am taking and not my butt getting lazy….ha ha.
The pharmacist talked to me yesterday about my prescriptions I was picking up. I told her she made me feel so much better because I’ve been so exhaustingly tired. I mean tired to the point I can lay my head down on the table and lights out. For those of you that know me very well, you know I’m not someone to take a nap during the day. Not even a Sunday afternoon nap. I have taken a few little naps now though.

Today I am having lunch with a wonderful friend. It has been a while since we have been able to do this. So I am looking forward to being able to catch up with her. Now I just have to come up with where to go for lunch……any suggestions?

Well, update on the Baker’s cyst, yes, it is filling back up just like they told me it would. I go back to see the doctor for that next week. Plus, I will see my favorite doctor at his new office to set up my next upper scope. Yes, it’s that time again. But hopefully and prayerfully, this time everything will be clear there.

I’m looking out my office window and I see the sun shining through the trees behind my house. It looks like it’s going to be another beautiful day. Thank you Father!

I’m thinking about some stories I want to share with you. I will post more later.
Don’t forget to click over to my guest book. Leave me a note. Let me know what‘s on your mind today. Some of you have said that you don’t know what to say because so many people have written so much. My answer to you is, post what is on your heart. Each of these notes along with your emails are treasures to me. They are a wonderful boost to my spirits on those low days. Thank you.

Quote of the day:

“Be the living expression of God’s kindness -- Kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting.”
Mother Theresa

Verses:

Be on your guard; stand firm in the faith; be men of courage; be strong. Do everything in love.
I Corinthians 16:13-14

Monday, May 16, 2005 2:48 PM CDT

On a day like this I wanna crawl beneath a rock
A million miles from the world and the noise
The commotion that never seems to stop
And on a day like this I wanna run from my routine
Run away from the daily grind that can suck the life right out of me
I only know one place I can run to

I , I wanna hide in You
The Way, the Life, the Truth
So I can disappear
And Lord, cause all there is to see coming out of me
You become clear, as I disappear

Don’t want to care about earthly things
Be caught up in all the lies that trick my eyes
And say it’s all about me

I’m so tired of it being about me.

I, I wanna hide in You
The Way, the Life, the Truth
So I can disappear
Lord, cause all there is to see coming out of me
You become clear, as I disappear

Words from “Disappear” by Bebo Norman

I know some of you are thinking, “okay, she’s starting the post with words to a song again. And she’s posted these words to this song before.” But there is a reason. The words are important. A lot of times they reflect how I am feeling or what I am going through. It’s a good way to express what’s inside me sometimes, when it would be hard to otherwise.

This morning I was suppose to go with the girls for the annual “Last Chance for a Quiet Girlie Breakfast”. But when Queen called to remind me I had to tell her I just couldn’t go. A hard thing to do. I wanted to go, knew I would laugh, but also knew that I just didn’t have the energy. I am just a whipped kitten right now. Believe it or not, I actually laid back down for an hour! Anybody that knows me very well, knows that is just not me. See how tired I am. It’s shocking to me.

But you know prayers, yes prayers, were answered. Because two other friends emailed me wanting to have lunch with me today or tomorrow. I thought to myself, I think tomorrow maybe I would feel better. But I emailed back either day was fine. (God said that today was the day) She emailed me back….today. So I got myself together and met them. It’s kind of funny because we ended up going to two girlie places first…both closed on Mondays. We then settled for a little place in Pegram. You know they are just what I needed in my day. We laughed and laughed. I love these women. I am so blessed by their friendship. More than words.

Some of you will understand this, some of you may not. I say that these are my low times, sometimes hard times. When I am in a low spot, I cry at the drop of a hat, because sometimes it’s just overwhelming. The smiling, the nothing gets me down, the essences of Stephanie. But even with all of that, I can still say that the low times are good times because that is when He pulls me closer. The words that come during that time are usually so overwhelming and amazing to me. He’s just so wonderful and I know He has a special plan for all of this.

I can’t tell you how much your emails, notes on my guest book, cards, and so on mean to me. They are such a bright spot in my day. Thank you for loving, caring, and praying for me and my family.

Quote of the day:

Those who bring sunshine to the lives of others cannot keep it from themselves.
James Barrie

Verse:

He will fill your mouth with laughter and your lips with shouts of joy.
Job 8:21

Sunday, May 15, 2005 6:16 PM CDT

Hi everybody!

You know Sunday is my favorite day. But this morning I woke up and just didn’t feel good. I think a mixture of things are causing this; chemo, heat, and so on. I kind of joked about it with Bennie and told him I was having a pouty morning. He said that if anyone deserved one it was me. I really had to work at getting ready for ss and church. That ole devil was trying to ruin my entire day.

Today was the last day of revival at CRBC. The pastor for revival was very good. He has a true passion for what he does. Today he said that we need to “kiss the world with God’s love”. Of course he didn’t mean literally kiss, just touch, make a difference. I’ve thought about that all day today. Are we doing that? Or do we get so caught up in what’s going on in our lives that we forget what’s truly important? So remember to “kiss the world with God’s love”. It may be the only “kiss” someone gets. Lets make a difference!

Quote of the day:

Kiss the world with God’s love.
Bro. Ron Gleaves

Verses:

I always thank my God as I remember you in my prayers, because I hear about your faith in the Lord Jesus and your love for all the saints. I pray that you may be active in sharing your faith, so that you will have a full understanding of every good thing we have in Christ. Your love has given me great joy and encouragement, because you, brother, have refreshed the hearts of the saints.
Philemon 1:4-7

New Picture….it’s not Hawaii. Diva, you are going to love this. Bennie did this for us.

Send me an email or leave me a note on my guest book. Tell me what you think about the post.

Saturday, May 14, 2005 10:31 AM CDT

Good morning.

Well, the sun is behind the clouds this morning and pretty much matches how I feel. This higher dose of chemo has been kicking my tail. I feel sick to my stomach and very tired most of the time. Plus, the heat has really gotten the best of me this week. Do I sound like a whiney baby, or what?

I have been going through the cards that I have gotten since this started 2 ½ years ago. You would be amazed at the stack. I haven’t even made a dent in it! But they have brought many smiles to my face this morning, going back through and enjoying them again. So see, it’s a continuing boost to my spirits. Thank you al for taking the time to do that.

I don’t have anything else to post this morning. But I wanted to end this post with a number of quotes and verses. I hope you all have a wonderful weekend. Please remember to go to my guest book and leave me a note. Or if you would rather email me privately that is fine also crowe725@aol.com.

Quotes of the day:

If you have a song of faith in your heart, it will be heard by the look on your face.
Unknown

Live by faith.
Unknown

It is the sweet, simple things in life which are the real ones after all.
Laura Ingalls Wilder

You are built in pieces of many different things - strength, courage, and love…ESPECIALLY LOVE!!!!!!
Terri Cecil from Chicken Soup for the Teenage Soul II

The supreme happiness in life is the conviction that we are loved.
Victor Hugo

Verses:

May he give you the desire of your heart and make all your plans succeed. We will shout for joy when you are victorious and will lift up our banners in the name of our God. May the Lord grant all your requests.
Psalm 20:4-5

The Lord is my strength and my shield; my heart trusts in him, and I am helped.
Psalm 28:7

God is our refuge and strength, an ever present help in trouble.
Psalm 46:1

Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed.
Psalm 57:1

Thursday, May 12, 2005 8:57 AM CDT

Good morning!
I can see the sun shining through the trees back behind my house. I love looking out my office window this time of year. The trees are so full and green, and the sun filters through the branches. It has such a soothing effect on me.
I don’t have much to post this morning. But you know the words could come a little later on in the day. The only update is that the cyst is filling back up just like the doctor said it would. Plus, there hasn’t been any relieve from having it done. So I will see them in a week and a half. As far as the full dose….still the same….very very tired and pretty nauseous. But it’s all about the “shrinkage”.

A sweet friend of mine emailed me this short story and I want to share it with you. Is your hut on fire?

The only survivor of a shipwreck was washed up on a small, uninhabited
island. He prayed feverishly for God to rescue him, and every day he
scanned the horizon for help, but none seemed forthcoming.

Exhausted, he eventually managed to build a little hut out of driftwood to
protect himself from the elements, and
to store his few possessions. One day, after scavenging for food, he
arrived home to find his little hut in flames, with smoke rolling up to the
sky. The worst had happened, and everything was lost.
He was stunned with disbelief, grief, and anger. "God, how could you do
this to me?" he cried.

Early the next day he was awakened by the sound of a ship that was
approaching the island. It had come to
rescue him. "How did you know I was here?" Asked the weary man of his
rescuers. "We saw your smoke signal," they replied.

It's easy to get discouraged when things are going bad, but we shouldn't
lose heart, because God is at work in our lives, even in the midst of pain,
and suffering. Remember that, the next time your little hut seems to be
burning to the ground. It just may be a smoke signal that summons the grace
of God.

You may want to consider passing this on, because you never know who feels
like their hut is on fire today........

Quote of the day:

My job is to take care of the possible, and trust God with the impossible.
Unknown

Verse:

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Mark 11:24

Tuesday, May 10, 2005 4:40 PM CDT

I’m back.

The appointment went well. We accomplished at least two things; doctor understanding my concern and taking action to help the situation, none of the “let’s watch it”. She is fairly sure this place is a Baker’s cyst. She had another doctor come in to drain the fluid out of it. Yes, right there on the spot. I like that kind of action. He asked about giving me a shot of lidocaine to numb the area. I asked him if he was only going to stick me once and he answered yes. So I told him to just do it. I was going to feel one stick no matter what, the numbing stick or the actual draining stick. Might as well get it over with. He asked if I was sure. I had to tell him about getting the 6 stitches without any numbing. I told him I had a high tolerance for pain and could handle one stick. He drained a whole syringe of fluid out of it. They are going to test it just to make sure it isn’t anything else. He told me that it will come back. I have to see them again in two weeks for follow up. At that time they will most likely set me up with Sports Medicine to have the problem fixed. They aren’t sure how this has happened because the MRI didn’t show any tears. But that is how most of these cysts form. So for today, I am icing my leg down and taking it easy.

Now on to other stuff………

I am sitting here at my computer trying to put words together to tell you how I am feeling. I guess it would be best to start by telling you 3 friends emailed me privately to tell me about different things; things they wanted me to pray about with them, concerned about their mother, and something that happened on Mother’s Day. Each of these emails brought tears to my eyes. These friends talked about what a strength I have been to them. How my walk and the way I choose to walk it has changed their lives and the way they look at things. Even now I have tears streaming down my face in amazement that they say that about me. This is just me, how I’ve been and how I will always be. If for no other reason than that right there, I know that I will continue my journal. It is a huge comfort of sharing and also assures me that I am leaving something for Zach to know his mother even better one day.
Oh, and girls, you know who you are, I love you to pieces. Thank you for your friendship, love, support, and belief. We will continue to be a team and pray.

My other thought today was….
The way people look at works of art is how I look at life, a sunset, the fluffy clouds in the sky, Zach’s giggle when I say something he thinks is dumb, and so on. I just think to myself, the greatest artist created all of these things, even down to my baby’s giggle. How incredibly awesome is that? Almost more than I can fathom.
I want you to take time, just a few minutes, and really look up into the sky, appreciate the fluffy clouds, sun shining, and so on. They are all a gift given to us for our enjoyment and appreciation. So lets enjoy and appreciate.

Quote of the day:

Prayer is the pause that empowers.
Unknown

Verse:

Delight yourself in the Lord and he will give you the desires of your heart.
Psalm 37:4

Monday, May 9, 2005 10:50 AM CDT

Number one question I am asked now….

How are you feeling now on your full dose of chemo? My answer….
Very, very, very tired and nauseous. But I can deal with it for shrinkage. It’s all about the shrinkage.

Okay so here is another little story for you. Yesterday, Becky and I went to the video store here in KS. Bennie thought (wanted or hoped) we were going to rent one of the Star Wars movies. Did he forget for a moment that it was Mother’s day? I joked with him that I was sure which ever one it was he wanted was most definitely already rented. Becky and I laughed and laughed. Anyway, we are at the video store, a man and a little boy walk in. The man speaks to me and calls me by name. Says that he has read my website and kept up with me until he lost the address. He said that I had my community praying for me and supporting me. I’ve had this happen a couple of times. I’m sorry that I don’t know this man’s name. I recognized his face. I guess the chemo brain just got the best of me there. I love my community I live in. It’s the best! I love that Zach has grown up here and has roots.

Like I said, I’ve had that happen to me a couple of times. Just out of the blue someone will come up to speak to me about something I have posted. You know I’ve said that when you read this, you are getting pure Stephanie, my thoughts, my feelings, my journey. So, it exposes me and makes me feel a little vulnerable. But it is well worth it for some of the wonderful emails and notes you have given me. Every time I start to think, should I stop posting, (God answers) someone lets me know what a difference reading my posts has made in their life. How it helps them to see things differently. They are saying this about me! It amazes me every single time. I’m just sharing my heart, myself. To know that I have helped even one person is such a blessing. I thank each and every one of you that are reading this. Thank you for walking this journey with me. Aren’t we going to have fun in July?!!!!!!!!!!

Quote of the day:

Some people touch our souls and stay in our hearts forever.
Unknown

Verse:

Blessed is the one who trusts in the Lord and has made the Lord his hope and confidence.
Jeremiah 17:7

Don’t forget to check out my guest book. Maybe even leave a little note to surprise me. It’s sure to make the sun shine a little “brighter”.

Sunday, May 8, 2005 10:27 AM CDT

Let me start by saying……..

HAPPY MOTHER’S DAY to all of the wonderful mothers.

It is so true what they tell you. Your heart will never be the same again after you have a baby. It is forever on your sleeve or in your throat, depending on the situation. It is the toughest job in the world…being a parent. That is, a truly loving, caring parent. Sometimes you have to be the “Mean Mama”. Sometimes it’s all fun and games. But no matter what, when they grow up they will know they were loved beyond measure. That some of the things they just couldn’t understand at the time, were really in their best interest. Sometimes they end up being some of the best gifts.

Okay, so I’ll give you a story to go along with it. Yes, Diva (my sweetest mother), you know the story. When my parents got married they blended two families together. When I type blended I have to just laugh. It was definitely not all smooth sailing. I had grown up with one brother (4 years younger) and now all of a sudden I had 2 step sisters (now sisters). Three of the four of us were teenagers. The youngest I believe was like 9 or 10. Lots of hormones in the house. Lots for parents to deal with on top of being newly married. But they did wonderful.

Then one day Diva called me to tell me some exciting news. No, she wasn’t pregnant…ha ha. She had found me an apartment, paid the first month rent, and done all the other little things to get me set up. Well, at the time (remember I typed earlier that kids don’t always understand at the time) I was devastated. I felt kicked out of my space, in my home with “my mother”. But you know what? I will tell you now that was one of the best gifts my mother ever gave me. I am forever thankful to her for doing that. Now as a mother and seeing that coming all too quickly with Zach I know what a hard thing it was for her to do.

Every year on Mother’s Day I am so thankful and amazed by my mother. Thankful that she had me and kept me. Amazed by all the things she has gone through and accomplished in her life while raising us. Throughout my entire life I have known beyond a shadow of a doubt my mother loves me and would be there for me. We are each others best friend. We’re attached at the hip. Talk to each other multiple times a day. There’s no way I could ever find the adequate words to explain my love and admiration for this woman, my mother. So, I thank God today for giving the mother He did. I hope you take time to thank Him also.

By the way, I lived in that little apartment f about a year. Then my mother helped me load up my Mustang and I headed to Nashville. Now that’s another story, for another day.

The sun is shining. It’s a beautiful day. Go out and enjoy the sun.

Just one more thing. Mr. B. (P.B., III) I hope your family is enjoying Baby Kate’s first Mother’s day with her mom. Thank you for the pictures. She gets prettier each day.

Okay, I know I have to add this here before I close. I am at my full chemo dose now, have been since last Wednesday. I’m hanging in there. Just very tired and nauseous. But I can hang with that for shrinkage and our big party. July isn’t that far away. Diva says that she believes it should be a luau. Still waiting for some of you “creative” people to pipe in….hmmmmmm.

Quote of the day:

Sorrow looks back, worry looks around, faith looks up.
Unknown

Verse:

This is an easy thing in the eyes of the Lord;
2 Kings 3:18

Wednesday, May 4, 2005 3:59 PM CDT

“Every moment is precious in our journey.”

A dear friend wrote this in a card that was sent to me by my Infra gang buddies. Those words are so simple, true, and beautiful. Every moment in our lives make a difference and is precious. Whether we know it or not we are making a difference in other people’s lives, hopefully positive influences. The smile that you absent-mindedly give to that friend in car rider line up, while walking, or to a stranger in passing at the mall could make the difference in that person’s day. When you add a friendly “hi” to the mix it just gets better. My hope and wish is to live a life full of precious moments (no not the figurines…ha ha). I want to fill my life full of smiles and laughs, sunshine and rainbows, flowers and butterflies, hugs and kisses, friends and family, and so on. How much better can life get from there?

This evening I will add my final pill to be at my new chemo dose. So far I have had a good day. You know why? Because I got to spend it with Zach. Just me and him. Oh, we did have to go do a minor little thing this morning…..get his lower braces. I say minor jokingly. He is pretty sore this afternoon. He’s a tough one though, chip off the old block. You know Zach just doesn’t like to have people mess with his teeth. But he doesn’t mind going to his orthodontist. Of course, he is “The Best” orthodontist. His office is great. All the girls are wonderful.

After that we stopped by to see the Infra gang. We had lots of laughs and smiles there. This group of friends are such a strength to me. I am so thankful and blessed to have them in my life. Their ministry and friendship to me is a wonderful treasure. When I got home I had 2 postcards and a card from them in my mailbox. Just something that takes a few moments of their time. But it is such a humbling, amazing gift that they give me each time I go to the mail box. I say humbling with amazing because I am humbled by their love and all the rest of you too. Humbled to be loved and to feel that love so deeply. Thank you beyond the words that I can piece together. I love you all right back!

Thank you girls for the beads. I can’t wait to use them.

Quote of the day:

Moments
Sweet memories are woven from the good times.
Unknown

Verse:

May the words of my mouth and the meditation of my heart be pleasing in your sight, O Lord, my Rock and my Redeemer.
Psalm 19:14

(#15, I know that is a verse from your favorite chapter. Thank you for sharing it with me.)

Tuesday, May 3, 2005 6:51 PM CDT

Back by popular demand….Yes, I am making my necklaces again. Enough of you have called wondering when I would get my beads back out again. So I have started. I will actually be at Pegram Elementary School on Saturday selling them. Every year they have a vendor type deal at the school and they asked me to be a part of it this year. So if you are in the area stop by and check out the different vendors.
When I first sat down yesterday to start what I call “creating” my necklaces I didn’t have a single inspiration…at least not at first. I would put a couple together but then not like something about it. That means I would put it all back and start over again. I was a little concerned at first, concerned that I had been away from making them too long. I haven’t made any since before Christmas. But I stuck with it and now it is going smooth once again.

Tomorrow I will add the final pill to be at my new chemo dose. So far, for the most part, I have been okay. Just a little more tired and nauseous. I’m willing to endure that for shrinkage. Because when I hear those words it is definitely party time. And we are going to party come July. I’m visualizing, believing, and planning!
By the way, I’m still waiting for some of you to pipe in with your ideas and thoughts about this big blow out we are going to have. So don’t let me down. I know you are pretty creative. A note or email from you would brighten my day more than you realize.

Quote of the day:

Live every moment
Laugh every day
Love beyond words

(I saw this in a picture today and actually wrote it down because it so touched me. Very profound words. I wish this for all of you.)

Verses:

The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.
Zephaniah 3:17

The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.
Habakkuk 3:19

Saturday, April 30, 2005 8:02 PM CDT

I bow and I fall Lord
At Your feet again Jesus
I worship - I adore You
You’re beautiful to me

I’m hungry
Oh I’m thirsty for more
To be in Your presence Lord that’s what I long for

Words from “Chasing After You” by Inhabited

I can’t tell you how many times I have listened to this song today. I wanted to share a part of it with you. The tears have dried up for now. Thank you so much for all the emails and notes. I have known without a doubt that I was being lifted up today. Thank you for your never ending prayers.

Zach and I spend the afternoon with my parents. You know I had to see “Diva” to make sure she is okay. Well, that is as okay as she can be while she is taking this medicine. We talked about the different things you have to endure and put up with while taking it. Some of the hardest are, metallic taste and thrush. I feel her pain. I have been there many times. She has 6 days left. Please continue to pray that this round will do the trick.

I have increased my Tamoxifen again. I’m now at 100 mg a day. Only one more pill to add to be at the full dose. Bennie wants me to stay at this dose for 4 or 5 days before I bump it up the final time. I have already noticed that my appetite was completely gone today. I realized I hadn’t eaten today at about 4:00. I wasn’t even hungry then. But I knew I had to eat. I’m also very tired. This is all in the name of shrinkage. Because we have a party to plan for. I actually dreamed last night the desmoid on my left side had shrunk. When I woke up I felt my abdomen to see if it were true……not yet…but soon. We’re visualizing, believing, and making party plans!!!!!!!!

You know what tomorrow is……my favorite day, Sunday! It’s going to be a great day! I believe it!

“Even though the journey is long and I know the road is hard,” I wouldn’t change a moment of what God has planned for me. I just pray that I am always a faithful and true child of God. His glory is what I want everyone to see shining through. Because it is only from His amazing love and faith in me that I am able to walk this journey.

Quote of the day:

God’s fingers can touch nothing but to mold it into loveliness.
Unknown

Verse:

“…If it seems slow, wait patiently, for it will surely take place. It will not be delayed.”
Habakkuk 2:3

New Hawaii picture you will laugh over. It's the third one.

Friday, April 29, 2005 11:31 PM CDT

I sit here at my computer listening to the rain fall outside my window and feeling the tears that match that rain falling down my cheeks. Yes, even I have those “cry baby” days as Queen loves to call them. I’ll admit they don’t happen too often. God made me pretty strong. But every once in a while I just seem to get knocked down a little too hard and the tears are inevitable. Tonight I have had a couple of situations that just reminded me so vividly how different my life is in some ways now. Oh but unless you know me extremely well you would probably never guess. For the most part I do a pretty good job compensating. But inside, I know. I know each time I have to figure out a way to do something, get through something…sometimes just ordinary things, my life is forever changed. I do miss the ease of before. But I am very thankful for this journey and the confidence He has in me.

I am opening up to you for good reasons. First of all, because I have promised to share this with you. You need to see this part of me to understand and to know that even I have weak (I call them tired) moments. Those are the times I pray and ask my Father to carry me for a while. By sharing this I know it helps everyone to feel they are praying more effectively. But the most important reason is….to remind you to cherish every moment that you are given. We are not promised tomorrow. Don’t take for granted even the smallest of things. Because tomorrow that small thing could be what you long for. I am very thankful each and every day for everything from seeing my first butterfly of Spring to a beautiful sunset to the hugs from my boys and so on. God is so good to us. He loves us more than we can fathom.

This will probably be the saddest post to date. No big girl shoes or panties on tonight. My heart just aches. So the weather is matching me completely tonight. But I know joy comes with the morning.

You know what would brighten my spirits so much? Lots of notes and emails from everyone of you. You just don’t know what a blessing your notes and emails are to me. Each one is a treasure. Plus, I’m still waiting for party ideas from some of you. You know I need lots of help getting this celebration together.

I want to share words to a song that really touches and comforts me. Hope they touch you also.

Even though the journey is long
And I know the road is hard
You're the One who's gone before me
He will help me carry on
After all that I've been through
Now I realize the truth that I must go through the valley to stand upon the mountain of God.
words from Mountain of God by Mac Powell

Quote of the day:

It is not how much we have, but how much we enjoy that that makes happiness.
Charles H. Spurgeon

Verse:

“The Lord is close to all who call on him, yes, to all who call on him sincerely.”
Psalm 145:18

Thursday, April 28, 2005 11:04 PM CDT

Hi everyone! It’s been another rainy day in KS. The day kind of matched how I was feeling…kind of yucky. But that’s okay. It’s all a part of getting that shrinkage.
Just a reminder here, keep those ideas for our party coming, either on my guest book or email (crowe725@aol.com).

I made a decision today. I am going to find an orthopedic surgeon tomorrow. I emailed one of my doctors how I felt about the MRI report. I said that I couldn’t rest with that report. Because I have had many reports before that I had a fluid filled collection, abscess, or fluid filled cyst, only to find out once they had placed a drain in my hip for months on end and then decided to do exploratory surgery that it was actually a cystic desmoid. So, you see why I can’t rest until I know beyond a shadow of a doubt. I don’t want to wait around thinking it’s one thing and get blindsided. I would rather take care of it right now. I hope that it is a synovial cyst. You know what I say, “Knowledge is power.” The doctors see me, but then they go home to their families and lives. I don’t get to leave this at the office. So it is up to me to stay on top of this.

Please remember my mother “Diva” in your prayers. She has 8 more days on this medicine, heavy duty stuff. She is deathly ill from the high dose. But she is determined to finish it. I pray that this 2 week round will do the trick. She always tells me I am her hero. But I am who I am because she loves me and believes in me. She has always been my hero, such a strength to me. Diva, I love you beyond words!

Quote of the day:

I believe that a person ought to know what he believes, why he believes it, and then believe it.
Charles “Tremendous” Jones

Verse:

Let your eyes look straight ahead, fix your gaze directly before you.
Proverbs 4:25

**A note on my guest book or an email from you would surely make the sun shine brightly for me!

Wednesday, April 27, 2005 10:20 PM CDT

Quotes for the day:

Believe it! High expectations are the key to everything.
Sam Walton

Extraordinary people visualize not what is possible or probable, but rather what is impossible. And by visualizing the impossible, they begin to see it as possible.
Cherie Carter-Scott

Planning is bringing the future into the present so that you can do something about it now.
Alan Lakein

I know this is not the way I normally start my post. But change is good. Just thought I would start with the quotes this time because I found a new book of quotes. I’ve been enjoying reading through it and highlighting the ones that really touched me.

I picked these three to share with you because believing, visualizing, and planning are what we need to do. The days are clicking away. We’ve got a lot to do between now and July 25th! So this is what I am going to ask of you. Either email me or leave it on my guest book, I need your ideas for this big blowout celebration! Because I am visualizing, believing, and planning on shrinkage. I’m doing my part…taking all the yucky medicine, doing a lot of praying, and now we have to do the planning. So I can’t wait to hear all of your ideas……….

Verses:

And my God will meet all your needs according to his glorious riches in Christ Jesus.
Philippians 4:19

If you remain in me and my words remain in you, ask whatever you wish, and it will be given you.
John 15:7

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”
Jeremiah 29:11

Wednesday, April 27, 2005 8:53 AM CDT

Well, yesterday here in Nashville, started out as a rainy day. I did things around the house, just didn’t feel too good. It could be the chemo or just a not so good day. Whatever it is, it will pass.

I had to wait and wait. Finally as I was waiting in the school pick up line I called to check on my MRI report. I was told it was in and they would have the nurse call me back after the doctor looked at it. So from there I had to run to the grocery store…in this nasty, rainy weather. Going to the grocery store on a nice day isn’t any better though. But we do what we have to do, right? When I went in it was raining outside. While I was shopping the nurse called me back. The doctor believes this is a Baker’s cyst, which in my opinion is the best answer. My only concern is that I have been told before that I had a fluid filled collection….abscess….cyst, only to be told once they did exploratory surgery that it actually was a desmoid. So for right now we are going to watch this baby.

But you know what is the best part of this story? When I walked out of the grocery store the sun was shining so bright I needed my sunglasses! How do you like that? Answered prayer. I don’t know about you, but I needed to see that sunshine right then. You know some days are just tougher than others, but we get through them and it makes us stronger. It also helps us to realize how resilient we are.

I am going to do a couple more days on this dose of chemo before I bump it up again. I only have two more to add before I will be at the new dose. So far I am just real tired and nauseous. So I have to make an effort to eat and drink. I know, I know some of you are saying, “I wish I had that problem.” But I will tell you, no, you don’t. Just be happy and healthy with the person God made you to be. Remember what I love to say, “God doesn’t make mistakes.” Your body (mine too) is one of His many masterpieces. So love it!

Quote of the day:

Make today the “Best Day Ever”. You only have one chance at it.
Stephanie

Verses:

This is the day that the Lord has made, I will rejoice and be glad in it.
Psalm 118:24

Thou has put gladness in my heart.
Psalm 126:5

Monday, April 25, 2005 9:56 PM CDT

I have great news……

Dana is coming home from the hospital tomorrow!!!!!
Thank you for all of your prayers for her and her family. Please continue to pray for her recovery and therapy.

I am posting so late today because I have been at Vanderbilt all day and I’m just tired and numb.
I had to see my GI doctor (my last appointment with him at Vandy) for follow up. I will see him again in a month at his new office and he will set up my upper scope. After I finished with him I checked with my internist’s nurse about taking care of the CT while I was there. She said the doctor had decided a MRI would probably be better and I could have it at 12:45. By the time I finished having my MRI it was 3:00.
No, I haven’t heard from the doctor yet. But I believe it is a Baker’s cyst. That would be much easier to take care of. In fact, a couple of my buddies and I have discussed doing the procedure ourselves. Of course, Bennie vetoed that very quickly.

The waiting part is what is hard. Because each minute waiting is a minute from taking care of it, getting the game plan together, and moving forward. It’s not like anything they are going to tell me at this point would surprise or upset me. I just take it all in, say a prayer, and move forward. So right now I feel like I am waiting for them to catch up with me. I’m tapping my foot, hands on hips, trying to be patient………waiting.

I’m sure I will hear something tomorrow.

Oh, I am up to 80 mg a day on my chemo. So far, for the most part, I am handling it okay. I can do this to accomplish the shrinkage that we are all are praying for. You know July isn’t that far away.

Before I close for tonight, I want to say thank you to all of you that have emailed me and left notes on my guest book in the last few days. Sometimes when there are few words, there is a reason. Your emails and notes have lifted me up and I am thankful.

Quote of the day:

What you say tells people who you are.
Unknown

Verse:

For out of the abundance of the heart the mouth speaks.
Matthew 12:34

Sunday, April 24, 2005 9:00 PM CDT

…and I see you
and I made you
and I love you more than you can imagine,
more than you can fathom
I love you more than the sun
and you shine for Me.

words from “More” by Matthew West

Quote of the day:

Will not the Lord’s time be better than your time?
C. H. Spurgeon

Verse:

When I am afraid, I will trust in you.
Psalm 56:3

Sunday, April 24, 2005 10:06 AM CDT

Hi everybody!

I am running away this morning….all the way to Gallatin. Zach and I are going to spend the morning with my parents. Today is kind of a, I don’t know, kind of slow, not feeling too good, just want to “be” kind of day. Spending time with my mother always makes everything better.
I just started taking my halfway dose of chemo. So I’m on the way to shrinkage. My leg is giving me some trouble today. But hopefully early this week I will know more about that.

Just wanted to check in. Before I run away for the day. I see the sun shining outside my window. That’s a wonderful sign.

Quote of the day:

If God chooses to remain silent, faith is content.
Ruth Bell Graham
(I love this.)

Verse:

Let us hold on to the confession of our hope without wavering, for He who promised is faithful.
Hebrews 10:23

Friday, April 22, 2005 10:46 PM CDT

Hi!

It’s been a busy day. I ended up having to see my internist today because I have a knot on the back of my leg right behind my knee. My oncologist wanted me to see her to make sure it wasn’t a blood clot. She sent me for an ultrasound - it’s not. She and my oncologist think that it is either a Baker’s cyst or a desmoid. I have to go sometime next week to have a CT scan done on my leg.

I have to admit when I first felt it I thought no, not a desmoid there. I am praying it is just a cyst. But I have also prayed that if it turns out to be a desmoid I know I will be okay. He’s walked this far with me. I believe He can outlast me by a long shot. I just asked Him to please pick me up if He saw me stumble.

Today’s been a full day. I’m tired and the words just aren’t here yet. Tomorrow I will increase my chemo again and see how it goes. I will be half way to my new dose.

Quote of the day:

God walks with us. He scoops us up in His arms or simply sits with us in silent strength until we cannot avoid the awesome recognition that yes, even now, He is here.
Gloria Gaither

Verse:

Draw near to God, and He will draw near to you.
James 4:8

An encouraging note from you would sure brighten my day!

Thursday, April 21, 2005 1:08 PM CDT

What a beautiful day it is!!!!!!!

I am so glad that Spring is here. Sorry it has taken me this long to get to my computer. Life is just busy right now. Between my doctor stuff, Bennie’s stuff, and my friends, Dana & Burn. But that is not a complaint. I am thankful for this life and all that goes with it.

First the best news. YES, I got to see Dana yesterday before my doctor appointment. I have to admit I was afraid. One of the things I have to be careful about with my adrenal insufficiency is stressful and shocking situations. I wasn’t sure what I was walking into. I just knew I had to be a big girl about it and I had to see my friend. I am so happy that I can tell all of you that she looks so much better than I expected. She does have a long recovery. But these are all fixable, healable things. Right now they are unsure how long she will be in the trauma unit. But she will most likely be moved at some point from there to the Stallworth Rehabilitation part of Vanderbilt.
Please keep her and her family in your prayers. Especially her boys. Zach and I had a long talk about all of this last night. He has been having a very tough time with this because Dana is his “Lake Mama”. She has been the best in the world during all my surgeries and stuff taking care of my baby (Queen, you too). Zach has cried a few times with me worried about Dana. We talked about how Caleb needs to be able to go to school and that be his “safe zone”. At school he needs to be able to be Caleb, just ordinary Caleb. Not Caleb, with an injured mom. When he is at school he can escape the scariness of his mom being hurt, almost like it hasn’t happened. Because once he leaves he knows it will become real again. But for those few hours he can pretend nothing has changed. So please lift these sweet boys up every chance you get.

Okay, so now I know you want to know about my appointment. Yes, Bennie went with me. I had to have blood work done. I also had to have extra blood drawn for a research study I agreed to be a part of. They needed this blood for a tissue study. I am willing to be a part of just about anything to further the research for this. Well, we had a lengthy, but very good appointment with my oncologist. After quite a bit of discussion we decided that I would increase my chemo 6 times the amount that I am currently on. Plus, add 300 mg of Sulindac. Because I am taking such a high dose of Sulindac I have to take another medication to reduce the acid in my stomach. Sulindac can cause stomach ulcers and bleeding. Plus, I have to gradually increase my chemo over the next few weeks. The new dose I will be taking of Tamoxifen increases my risk of blood clots. So I will have to be alert to that. The doctor talked to me all about that. Of course, I told him my friend, Burn, has just dealt with that. This was a very good appointment. Bennie and I both walked away feeling like we had accomplished something. I took my first extra dose of Tamoxifen and first dose of Sulindac yesterday afternoon. So I am on the road to shrinkage. I told my doctor that I had a plan, double party in July. You know, celebrating me turning 40 and shrinkage. His answer was, “Well, I guess we better scan you in 3 months then.” So, I have my next CT scan on July 20th, see him on the 21st, and turn 40 on the 25th. Everything is lined right up.

So far upping the dose and adding the other I have noticed that I am a little sick to my stomach and tired. But those are livable things.
Oh, I almost forgot, I got a picture of one of my demonsters. Bennie said that it was bigger than he thought. It’s pretty interesting to see.

Anyway, that’s all the news for now. If you have a moment send me an email (address at the bottom) or leave a note on my guest book. You don’t know how much that brightens my day.

Quote of the day:

Walk boldly and wisely…There is a hand above that will help you on.
Philip James Bailey

Verse:

I can do all things through Christ, who gives me strength.
Philippians 4:13

Wednesday, April 20, 2005 8:06 AM CDT

Good morning.

I’m getting my thoughts together this morning so I will be ready to meet with my oncologist. I’ve done some more research on other treatment options. I will take that and my last two ct reports with me. I want to be able to discuss everything. I have found two different options that are a little less toxic than most others. Of course, none of them are without their fair share of side effects. But I can handle the nausea, weakness, hair loss, and so on. It’s the others that I want to stay away from; heart damage, bone marrow loss, etc. Those tough ones are with the treatments I don’t want to touch, at least not just yet and hopefully, prayerfully won’t have to.
So, I believe I am ready for this appointment today. I have prayed and know you have also. I got my “Big Girl” outfit picked out and ready.

Okay, so on to what’s on my mind, Dana and Burn. I got to see Burn yesterday. She will probably be in the hospital until Thursday. She is very blessed (no not lucky) to have gotten through this. Blood clots are very dangerous. She has told me in the past how strong I am. But I have to tell you, she is a very strong girl. I listened to her tell about what happened before she got to the hospital and thought to myself, “She doesn’t realize how strong she was to make it through.” No, she was so intent on getting to the hospital that was all she was focused on. But that is what we do when we are placed in that kind of situation, our survival mode kicks in.
She made us laugh yesterday talking about her “fat leg” (because of the blood clot). It was good to see her and hear her laugh. Please continue to pray for her.

Dana is still in the trauma unit. I am hoping that I will get to see her today while I am at Vandy. If Bennie gets the things he needs to do finished this morning, I would like to go early to check on Dana. If not, I will do that after my appointment. I am praying that she will be doing well enough to be moved to step down today. I know she had a ct done yesterday afternoon. The doctors should talk to Mike probably this morning about the report. Please continue to pray for her and her family. This will be a lengthy recovery I’m sure. But you know what? All these things are fixable and will heal. She is here with us and for her boys. I am so thankful for that!

Quote of the day:

Faith is a living, daring confidence in God’s grace, so sure and certain that a man would stake his life on it a thousand times.
Martin Luther

Verse:

Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

Tuesday, April 19, 2005 8:36 AM CDT

My heart aches for my friend. Queen and I raced to Vanderbilt as soon as we heard the terrible news. You know you just don’t ever expect to get that phone call. I have thought about the three of us and our boys at the lake just a few weeks ago. We had the best time.

On my way to pick up Queen (yes, I drove because my car can drive there by itself practically) I called my soul sister to let her know what was going on. I told her that the only words I could get out were, “Please God.” I asked her to pray for Dana. I know God knows and knew what I couldn’t express. But just knowing that she was interceding for me was a huge comfort.

We weren’t able to see Dana. She is in the trauma unit at Vanderbilt. But we knew that we probably wouldn't get to see her. It was important to us just to be there. They are hoping to move her to step down today. Queen and I will be making hospital rounds today. We just found out that another friend of ours, “Burn”, is at Baptist due to a blood clot in her leg.

Please take time today to pray for my friends, Dana (pronounced Donna) and Burn, and their families. Dana has two sons, one is a senior and one is Zach’s age. Burn has two grown sons.

Quote of the day:

True friendship is a fabric that nothing can unravel.
From “Easy Answers to Life’s Hard Questions”

Verse:

God is our refuge and strength, an ever present help in trouble.
Psalm 46:1

Monday, April 18, 2005 2:36 PM CDT

Where do I begin?

Well, the natives are restless…..my family, namely Bennie and Diva. They are really pushing for me to go to Cleveland Clinic to see a doctor there who does a lot of research for FAP. Diva and I actually met this doctor a few years ago at a HCCA conference. Both of them have talked off and on in the past months about this. But I haven’t really thought about it until now. I will admit that it has been nice (if you can say nice about all of this) being at home and able to see my doctors. Until the last few years I have always had to travel and been so far from home going through surgery. So this last two and half years, it has been a blessing to me to be close to home, Zach, family, and friends. It has meant that you have been able to visit me in the hospital, which means the world to someone stuck in a teeny tiny room hooked to an iv. It’s made it a little easier to handle. Plus it made it so I have been able to go to most of my doctor appointments and stuff by myself. Now unless you’ve been through something like this you just cannot fathom how important that is to a person. For me, going to my appointments by myself is me being in control (I know, I better look out). I think also me going by myself, it doesn’t seem like it is as bad. I guess I trick myself by thinking that. Plus, I rob the people that want to go with me of the opportunity to give to me.

Bennie is going with me on Wednesday to see my oncologist. I had hoped that if I didn’t mention it again, maybe he would forget and I could just sneak on to the appointment. But no, he called me this morning to make sure he had the right date and time for it. I even said that if he was busy not to worry about it. He replied that it was an important appointment and nothing else would get in the way of him being there. So, looks like I will need to wear the entire “Big Girl” outfit on Wednesday. I did ask him to please not over talk me. Because he is a man and he wants to fix things, he tends to be very outspoken. It is very important to me to be the one making these decisions. I know the ones that love me would like to just say, “Stephanie, this is what you are going to do.” Just like one of my doctors, is going to ask, “Why haven’t you taken the medicine?” When I have processed and believe that this treatment or that medication is what I need to do or take then and only then will I do it. Yes, I can be pretty hardheaded about some things. I am going to start the process of getting set up with Cleveland Clinic. I do think it is the right thing to do, if only for another opinion about treatment. I have to find the magic combination for shrinkage and life. But the medicine…..nope, not going to take that medicine. He thought he had talked me into it and he actually did. But I changed my mind after I left. So, I will have to deal with that decision next week when I see him.

Please don’t get me wrong. I am so thankful to be surrounded by all of my family and friends and I’m thankful for the love and support. My little bit of independence is taking care of some of this on my own. Then it doesn’t become such a big part of my life. Because it isn’t my life or what defines me. It’s just a small piece of the whole picture.

Quote of the day:

Only God’s love never fails.
Beth Moore

Verse:

Love never fails.
I Corinthians 13:8

Sunday, April 17, 2005 2:33 PM CDT

I am home again!
The retreat was wonderful. The speaker was incredible. Of course, she and I found out that we grew up in the same town and knew some of the same people. You know it was just a God thing, a very good connecting time. Her testimony and her friends’ testimonies were such a strength to me. The women that went to this 24 hour get-a-way are precious. We laughed, we cried, we played, we prayed, we shared. That’s exactly what God wanted. Because to do that with a group of women like these can only strengthen you. I’m so blessed to be a part of this group of women.

Now, Queen, if you are reading this, “Put your big girl panties on”. Yes, honey, you might need some tissue. Sorry….no, I’m not sorry. Because that would mean I would be apologizing for what He is leading me to share. I absolutely can’t do that.
My “Cabin Buddies” (minus the “The Captain” - we missed you), you ladies - sisters of my heart, my girlfriends, God blessed me the day He brought each of you into my life. Each time I am with you, each of you have your own special place in my heart and each of you give me a strength that is all your own. This journey is one that we share together. Thank you for walking (yes, walking) with me. The scenery along the way is incredible. Each morning He gives us the gift of another day and for each one I am thankful and blessed.
We have to gear ourselves up for the party that is coming in July. The biggest blowout. Starting today, plans for the double celebration begin. I’m turning 40 and proud to be able to do it and these tumors are going to be shrinking!!!!!!!!!!!!! So, for all of you that dread turning 40 you might want to share this party. I’m celebrating with all my heart. I told Bennie that I will be wearing a tiara on that day, Princess of that day for sure. No, gag gifts please. Forty will be wonderful and I am proud of it!

Well, I guess I should let you all know about “the surprise”. The surprise this weekend was that I was asked to give my testimony at the retreat. The reason I kept it a secret was because I wanted to be deep in thought about what I would share. You see, I could share the “I was saved when I was twelve years old”. Don’t get me wrong that is important. But what is even more important in my eyes to share is what He is doing in my life today! That’s my testimony. I also knew that my buddies would be “torn up” about it. We tend to cry together over things like this. The last time I gave my testimony in church (which was the 1st time at CRBC) none of them were there. But that was probably a good thing. Anyway, when we got to the retreat I asked when I would be speaking. To this point I had no clue other than it would be either Friday evening or Saturday morning. Well, guess what? It was right at the start. Yes, I was a little nervous. I was trying to calm myself. I know that is important. Things like that can just throw me into that dreaded tailspin. I was determined not to go there. These women love me. There weren’t any mean bears there…haha. I got up there and started by asking these women to please write down their favorite verse of strength in my notebook. I let them know how important these verses were to me. How I love sayings, quotes and most of all verses. These women don’t realize the incredible gift of strength and love they gave to me as I was speaking to them. I don’t remember everything I talked about. But I did share glimpses of what makes me, me. Then I shared some of my favorite quotes, verses, and the story about the refiner. Each time I have the opportunity to do this I pray afterwards to thank God for the chance to share this journey and how He loves me. Then I pray for the next chance. Because I just know that if I could do it again I would do a better job of sharing it. So I look forward to that next chance. Never knowing when it might be. But always ready.

Thank you for all of your prayers. They were undeniably answered. I made it fairly well through the retreat. I am very happy to be home again though. I will “be still” for a day or two. Yes, I have learned my lesson. This week will be a week of change. I see my oncologist so please be in prayer that God will direct us in regard to what we should do to get this shrinkage started for the party! I know this means putting on my “Big Girl Panties” and probably the shoes too. But I won’t be walking this alone.

Well, the sun is calling me. I hope you are out enjoying it! It’s the most glorious day. Today is our day. Claim it as yours. My heart is bursting, words are still here. But I know I am suppose to stop here for now.
One more thing…..don’t wait until tomorrow……do it today! It’s the perfect day…I’m sending hugs, smiles and love your way!!!!!!!!

Life is a journey…not a destination. Enjoy the trip!
From “Glimpses Of His Glory Thru Ordinary Eyes”
By Dr. Les & Page Hughes

Verse:

The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth.
John 1: 14
(Thank you Page for sharing this with me.)

Okay, so here’s your chance to add a little sunshine to my bright day. A note on my guest book or an email would be an absolutely wonderful bonus to the day. How about it?

Friday, April 15, 2005 11:33 AM CDT

Good morning!

Isn’t it the most glorious day? Yes, yes. The sun is shining and I feel okay. I started noticing yesterday afternoon that I was feeling just a touch better. Of course, I had to stop myself before I started running full force again. I am forever bad about that. Then I pay dearly for it. But believe it or not, I am learning…still learning. For me it’s a give and take. In order to do some things I have to give in other areas. That’s a huge lesson. So this week I have definitely been schooled. I am taking it easy this morning so I will be prepared for the retreat. We are going to leave after school today. That way all the mamas can pick their children up from school and get them where they need to be.

I have been asked to be a part of a skit that will be done at this retreat. I have to admit I was a bit nervous about it. But I think I can handle it. Plus, guess what part I got? I’m the teenager! Isn’t that funny? I was told I was the only one that could pull it off without hitch. Well, you know that just made the sun shine a little brighter here in KS. Made me giggle. This ought to be a lot of fun. But you know what is even funnier? Queen has been asked to be the baby! How funny is that?
I have something else going on this weekend also. I can tell you more about it once I have gotten back from the retreat. It’s a surprise and if I say something now some of the ones I am trying to surprise might read it. So please be in prayer for me with this. It’s very important. I am in prayer about it this morning. Also, please pray that things go smoothly for me while I am at the retreat. Changes in my daily routine can sometimes throw me into a tailspin with my health.

I won’t be able to post again until at least Saturday evening if not Sunday. But I am sure I will have a ton of stuff to share with you. I hope you all have a fabulous weekend! Get out and enjoy the sun. Have some fun!

Don’t forget, I’m still waiting on some of you to share your verse with me. Leave me a note on my guest book or email me at the address below.
Thank you all so very much for all your prayers, support, and love. I am blessed by you all and forever thankful!

Quote of the day:

If I could do it all again I wouldn’t take the rain away because I know it’s made me who I am.
Faith Evans
(quote given to me by “my baby girl” - love ya to pieces)

Verse:

A cheerful look brings joy to the heart, and good news gives health to the bones.
Proverbs 15:30

Thursday, April 14, 2005 7:49 AM CDT

Wonderful News!!!!!!!!!!!

Princess Kate was born yesterday afternoon! Mother and child are doing fine from what I hear. I’m sure granddad’s chest is pumped and grandmother’s feet haven’t touched the ground since Princess Kate made her entry. Life will forever be better with her in it. Welcome to the world Princess Kate! Thank you God for the precious blessing of birth.

I can see the sun shining through the trees outside my office window. I love looking out this window because at this time of year all you see is green and right now green and sunlight. It’s very peaceful.
I am going to try to have a “Be Still” day today. I’ve had a huge learning time this past week. I’ve had to accept some limitations. You know, that’s BIG for me to say. I am going to a women’s retreat on Friday. It’s an overnight deal. But in order to do that I have to be kind to myself between now and tomorrow afternoon when we leave. That means not overdoing it today. I tend to be hardheaded from time to time, thinking I can do whatever, whenever. Plus, I don’t like to inconvenience anyone because of my limitations. So I try and sometimes am able to do things that I later on pay for. God’s given me a little shake from time to time and I learn… for awhile. Then I try to carry it again and do it again. Isn’t it amazing sometimes how many times we have to be taught or shown something before we realize it’s what’s best for us? We just don’t like to have limitations. But not all limitations are bad. I am thankful for God’s patience and love.

Bennie told me that the next seven days are suppose to be beautiful ones. So get outside and enjoy the sunshine. I’m still waiting for some of you to share your verse with me.

Quote of the day:

In order to see the rainbow, you must first endure some rain.
Unknown

Verse:

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he care for you.
1 Peter 5:6-7

Wednesday, April 13, 2005 8:29 AM CDT

Good Morning!

The sun can’t seem to make up it’s mind this morning. It keeps peeking in and out. I believe rain is headed our way for today. That’s okay though because I know some of you will send sunshine my way. You are just sweet like that. Plus, on rainy days it’s a little easier to “Be Still”.

You know I want to brag, yes brag about something here. We’ve all prayed that God would put the right doctors and nurses on my team to “Keep Stephanie Healthy”. I can tell you that those prayers have been answered. I want to brag about “The Team” because for a person that has a chronic illness to have a team that they know is there for them and cares is so crucial. Even though I have known that I had FAP since I was 12, I was very fortunate that it didn’t really affect my life until the last 10 years. Until then I just had to think about it every six months when it was time for my scope. But once that was over I could put it out of my mind until it was time again. A lot of FAP patients aren’t that fortunate. But I know all of this is God’s plan. So everyday I wake up looking forward to how He will work in my life and on this journey He has given me.

Yesterday I called to let the nurses with my endocrinologist know about what was going on with me. I felt it was important to let them know what a tough time I was having, how I was handling it, and ask if I should do anything else. His two nurses are the best. Anytime I have called they have been so helpful, even when I am feeling like the “problem patient” (that happens when you just keep having things going on). I am thankful beyond words for that. Anyway, I talked to one of his nurses. She said that I needed to double my hydrocortisone for a few more days. Plus, I have talked to another person that has Addison’s who told me that it is easier to increase this medicine than decrease it. You have to wing yourself back down slowly or else you can go into a crisis. I am feeling better today than I have in the last few days. Those days were what I call “Learning Lessons”. I am human. I am headstrong. But He knows better and gets my attention.
I still have some troublesome issues I am dealing with. If they don’t get better this morning I will make the calls I need to. I just try to do what I know I can to make things better before I start to call a doctor.

Okay, so I told you I would let you know what I am doing with the verses you are emailing me and leaving on my guest book. Some of you have left them on my guest book. But my email still seem to be the place you feel most comfortable leaving thoughts and notes for me. That’s fine, just keep them coming. What I am doing…..well, I have told you that my bible is like a journal to me. A journal I will leave for Zach one day. He will know what helped his mama. I have told you that I highlight my bible. It’s pretty colorful. Now I have decided that I will write in the margin friends favorite verses. So for those of you that have already sent me yours, your name is written and the verse is highlighted in (if I didn’t already have them highlighted) my bible. So for the rest of you that haven’t shared, what are you waiting for? This is something special to me.

I hope you all have a marvelous day! Please continue to remember my friend and his family today as they wait for the arrival of their little princess. I will let you know when I hear anything.

Quote of the day:

The only way to overcome the fear of change is when the pain of staying the same is greater than the fear of change.
This is my mother’s favorite quote.

Verses:

One thing God has spoken, two things have I heard; that you, O God, are strong, and that you, O Lord, are loving.
Psalm 62:11-12

Before you leave click on over to my guest book, leave me a note and don’t forget to share your verse with me. Or send it to my email address which is on this page for you.

Wednesday, April 13, 2005 8:23 AM CDT

Good Morning!

The sun can’t seem to make up it’s mind this morning. It keeps peeking in and out. I believe rain is headed our way for today. That’s okay though because I know some of you will send sunshine my way. You are just sweet like that. Plus, on rainy days it’s a little easier to “Be Still”.

You know I want to brag, yes brag about something here. We’ve all prayed that God would put the right doctors and nurses on my team to “Keep Stephanie Healthy”. I can tell you that those prayers have been answered. I want to brag about “The Team” because for a person that has a chronic illness to have a team that they know is there for them and cares is so crucial. Even though I have known that I had FAP since I was 12, I was very fortunate that it didn’t really affect my life until the last 10 years. Until then I just had to think about it every six months when it was time for my scope. But once that was over I could put it out of my mind until it was time again. A lot of FAP patients aren’t that fortunate. But I know all of this is God’s plan. So everyday I wake up looking forward to how He will work in my life and on this journey He has given me.

Yesterday I called to let the nurses with my endocrinologist know about what was going on with me. I felt it was important to let them know what a tough time I was having, how I was handling it, and ask if I should do anything else. His two nurses are the best. Anytime I have called they have been so helpful, even when I am feeling like the “problem patient” (that happens when you just keep having things going on). I am thankful beyond words for them. Anyway, I talked to one of his nurses. She said me that I needed to double my hydrocortisone for a few more days. Plus, I have talked to another person that has Addison’s who told me that it is easier to increase this medicine than decrease it. You have to wing yourself back down slowly or else you can go into a crisis. I am feeling better today than I have in the last few days. Those days were what I call “Learning Lessons”. I am human. I am headstrong. But He knows better and knows how to get my attention.
I still have some troublesome issues I am dealing with. If they don’t get better this morning I will make the calls I need to. I just try to do what I know I can to make things better before I start to call a doctor.

Okay, so I told you I would let you know what I am doing with the verses you are emailing me and leaving on my guest book. Some of you have left them on my guest book. But my email still seems to be the place you feel most comfortable leaving thoughts and notes for me. That’s fine, just keep them coming. What I am doing…..well, I have told you that my bible is like a journal to me. A journal I will leave for Zach one day. He will know what helped his mama. I have told you that I highlight my bible. It’s pretty colorful. Now I have decided that I will write in the margin, friends favorite verses. So for those of you that have already sent me yours, your name is written and the verse is highlighted (if I didn’t already have them highlighted) in my bible. So for the rest of you that haven’t shared, what are you waiting for? This is something special for us to share.

I hope you all have a marvelous day! Please continue to remember my friend and his family today as they wait for the arrival of their little princess. I will let you know when I hear anything.

Quote of the day:

The only way to overcome the fear of change is when the pain of staying the same is greater than the fear of change.
This is my mother’s favorite quote.

Verses:

One thing God has spoken, two things have I heard; that you, O God, are strong, and that you, O Lord, are loving.
Psalm 62:11-12

Before you leave click on over to my guest book, leave me a note and don’t forget to share your verse with me. Or

Tuesday, April 12, 2005 9:48 AM CDT

Let me start this morning by telling you thank you for your prayers. My post from last night was very basic, but it came from my heart. The only thing I had there. I can admit today, this morning, that I was a little scared. I didn’t know if I would make it through the night. But that is always my thing….make it through the night. I don’t like to go to the ER. If I can make it through the night the daylight (the sunshine) can make things a little better. Plus, in the morning you can talk to the doctor, go to the clinic, it just makes things easier.

I filled my day yesterday like I would normally do. I say normally, like in the past. I’m headstrong enough to just charge through things. If I don’t stop then I can get it done. But it doesn’t work just like that anymore. This stent is a tough one. I don’t believe the other two gave me as many problems as this one is. I just have to give it a few more days and be a big girl about it.

The best part of my day was talking to the advanced biology class at the high school. This class was a bigger class than last semester. They were very attentive and had a lot of good questions. On my way there I was a little nervous and a little excited. Two combinations that eat up your stress hormone, which is what I have to take by mouth to compensate. Anyway, I said a prayer to be able to do a good job. These girls and boys were just great. They were still asking me questions after the bell rang. It was just wonderful. I am so thankful their teacher has given the opportunity last semester and this semester to talk to her classes. It was a blessing to me.

I should have known to stop there for the day and take it easy. But no, not me. I kept on like the energizer bunny. When I left the school I already knew that I didn’t feel right. It’s kind of hard to explain it, just sick to my stomach, like I could throw up on the sidewalk. How gross is that? But I charged on. That’s just what I do. Sometimes if I try hard enough I can out run it. It didn’t work this time. Things just got worse and worse, to the point that I checked my blood sugar thinking it must be that. No, that was fine. Checked my blood pressure, it was okay. But my pulse was low for me and I had been moving around so I was expecting it to be a little faster than normal. So, I took some medicine for the nausea and laid done, time to “Be Still”. The medicine didn’t help, the prayers did though.

This morning I am taking it easy. I will let my endocrinologist know about yesterday. I think the biggest thing is for me to realize I do have some limitations. Yesterday was another one of those learning lessons. Sometimes He just has to shake me a little harder.

Before I give my quote and verse for the day I want to ask you to please remember a very special friend of mine and his family in prayer. His daughter is 10 days overdue with her first baby, a sweet baby girl. They will induce labor on Wednesday. Please pray for this family. The joy of this new life. But all of us that are parents know also how we feel about our babies. They of course, are concerned about their baby.

Father God,
My prayer is that your angels surround this wonderful family. Comfort them and let them feel Your presence around them. Please guide the hands and hearts of the doctors and nurses they come in contact with. Lord, we are so excited about this new addition to their family. Thank you for the blessing of birth. God bless this family.
In Jesus precious name, Amen.

Quote of the day:

“The doctors told me I would never walk again, but my mother told me that I would, so I believed my mother.”
Wilma Rudolph
“The fastest woman on Earth”, 3 - time gold medallist, 1960 Olympics

Verse:

When anxiety was great within me, your consolation brought joy to my soul.
Psalm 94:19

Please remember to continue emailing or leaving me notes on my guest book what your favorite verse is. I am doing something really cool with them. I’ll let you know.
By the way, I’m depending on that little bit of sunshine from you, since the clouds are so heavy today.

Monday, April 11, 2005 10:32 PM CDT

PLEASE PRAY!!!!!!

Quote of the day:

Faith is not merely you holding on to God - it is God holding on to you.
E. Stanley Jones

Verses:

For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone.
Psalm 91:11-12

I can do everything through him who gives me strength.

Monday, April 11, 2005 8:02 AM CDT

It’s Monday morning. I hope you all had a wonderful weekend. I did. I wanted to post a couple of things this morning.

This morning say a little prayer for me. I am going to talk to the advanced biology class. I did this last semester also. I really enjoy talking with these young adults (At their age you can’t really call them kids anymore. Kind of an insult to them.). Their teacher thought it would be good for them to be able to talk and ask questions to a real person with a genetic syndrome. I am looking forward to talking with them today. You never know, one of them may decide to become a biomedical engineer or a surgeon or a nurse. All of these are important people to me.

Bennie’s hives are getting better. They were the weirdest thing! But guess what? He had the hiccups for 24 hours. I’m not talking about little hiccups either. No, extremely loud ones. This morning, so far, he doesn’t have them. I pray that they are gone. He thinks it from the medicine he’s taking.

Okay, I have something funny to share with you now. I went to Hawaii yesterday! I know, you are saying, “What?”. Yes, I went to Hawaii……took my beach blanket outside, spread it out on my front yard (I don’t have a backyard, just woods), had my music and a book. I wanted to feel the warmth of the sun for just a little bit. As I laid there soaking in the beautiful day my eyes got heavy. I laid my head down and started thinking about the beach in Maui. I pretended that each car that went by was actually an ocean wave. Do you know that I was sound asleep for 15 minutes….in Hawaii. Then the dogs started barking and woke me up. Boy that was a good little snooze. I might have to try that again.

I have to stop here for now to get my thoughts together before I leave for the high school. I will let you know how it goes. This is a bigger class than last semester.

If you haven’t read my Sunday post, please read that. Because there is something I have asked you all to do for me. Please, please.
I hope you all have a wonderful day! I’m going to!

Quotes of the day:

Hope is as essential to the soul as oxygen is to the body.

True friendship is a fabric that nothing can unravel.
From “Easy Answers to Life’s Hard Questions”

Verse:

I will thank you, Lord, with all my heart; I will tell of all the marvelous things you have done. I will be filled with joy because of you. I will sing praises to your name, O Most High.
Psalm 9:1-2

Sunday, April 10, 2005 3:20 PM CDT

It’s Sunday, my favorite day. I don’t think we could ask for a better day….well, it is probably even better in Hawaii.

I want to ask you to do something for me. It’s really easy. You can leave a note on my guest book. Or for those of you that prefer sending it to my email that is absolutely fine. Everyone of you that read my journal, please, please send me a note or email telling me what your favorite verse is and what it means to you. Why is it special to you? Also, if you happen to have a saying send that too. That will really make my day. I have been asking my family this same question. It’s fun sitting with them and talking about that.

Well, I will try to post more later. The sun is calling my name. Gotta go soak in a minute or two. That’s about all I can take right now on all my medicines (photosensitivity).

Quote of the day:

A glimpse of the next three feet of road is more important and useful than a view of the horizon.
C. S. Lewis

Verse:

I will show you my faith by what I do.
James 2:18

Saturday, April 9, 2005 12:05 AM CDT

Hello!

Is today a beautiful day? The sun is shining so brightly outside. It’s one of those Saturdays when you don’t wait to waste a moment of it.

Now to tell you about yesterday. Another step in this journey.
Bennie had to drop me off because he his regular doctor had made an appointment with a dermatologist for his hives. I was okay with that. I had my cd player and music.
I had the sweetest nurse. But that so far is boring right? I talked and answered questions for one of the anesthesiologist. My nurse was in and out getting everything ready for my dose of hydrocortisone prior to the procedure. I spoke with one of the residents. Then a second anesthesiologist came in. He was ready to take me back, but realized I didn’t even have an iv yet. So he decided to take care of that. He stuck me twice…or I should say, he jabbed numerous times. My nurse came back when he had stuck me the second time. She told him she was going to try my left arm. My left arm hasn’t ever let me down. Needless to say my right hand and wrist are sore and bruised.
I saw the anesthesiologist take out a syringe. I let him know I was/am a light weight. So he better let me sign before he gave that to me. He joked with me and said that he would only give me half to start out with. Then if I could talk and ask for more he would give me more. Just before he did I heard another nurse telling them to hold me. They had gotten a call that a friend of mine who is a resident. He was coming to see me. I don’t know if he helped with the procedure. But evidently he made it and I talked to him. I don’t remember a word of it or seeing him. That’s how Versed works though.
The procedure went as prayed for . At first I didn’t want to wake up. I was so tired. But that didn’t last long. I knew what I had to do to be released. So it was time to do it.

When we first left the hospital I was okay, still kind of numb from the stuff they had given me. Before we got home (pharmacy stops) I already know that I needed a pain pill.
Yes, this big girl can admit it.

Guess what? When we pulled out of the parking garage I saw the sun peeking out of the clouds. On our way to the hospital I had laughed and told Bennie that the sun was waiting to come out until I woke up. He laughed and told me I was probably right.
He loves to joke with me and say, “ Steph, you’re one of God’s favorites. So of course, the sun will be peeking out.”

You have asked me to tell you about a stent. It is a specially designed hollow tube, made of a flexible material. The length varies between 24 to 30 cm. Both ends are coiled to stay in place. Let me tell you it is not a comfortable thing. You definitely know it is there.
Here’s something funny. Through this last couple of years I have had different restrictions on bathing. Some times I can take a bath. Most times it’s a shower only. You know you don’t want to take a bath…that is unless you are told you can’t.
So for as long as this stent is in, no bubble baths for me….ha ha.

Hey but listen, it’s a sunshine Saturday, get out there and enjoy it.

Quote of the day:

We must learn to wait. There is grace supplied to the one who waits.
Mrs. Charles E. Cowman

Verses:

The Lord’s loving kindnesses indeed never cease, for His compassions never fail. They are new every morning. Great is Thy faithfulness.
Lamentations 3:22-23

Friday, April 8, 2005 8:35 PM CDT

I am home. I know you have waited for another post. I was right, by the time I made it home it was 5:00. Procedure went well, just the after effects of what they did and my kidney, ureter, and bladder trying to adjust to this foreign object. This tough girl admitted I needed my pain medicine. So that is why this post is short. I just wanted to let you know I’m okay. Thank you so much for everything today. I felt loved beyond measure!

Quote of the day:

Victory is doing your best.
Nike
(Believe it not I found this quote on the tip of my tongue. The tongue of my sneaker on the inside. I believe it’s another God thing”. Because I never look at the inside and I’ve had plenty of Nikes in the past. But this morning on the way to the hospital I happened to be sitting cross legged in my seat and looked down as I yanked the tongue of my shoe. There it was plain as day. I can’t tell you how many times I have worn these shoes and never seen that until this morning. How awesome is that?)

Verse:

Your word is a lamp to my feet and a light to my path.
Psalm 119:105

Don’t forget to spread a little “sunshine

Friday, April 8, 2005 8:27 AM CDT

Good morning!

I know you all are wondering how I am doing this morning. Well, I will tell you I feel pretty popular…ha ha. My phone has been ringing off the hook. I have laughed and laughed till my stomach is sore. I can’t think of a better way to start the day, especially on a day like this. All of you are just the best. I love you and am blessed by you.
I also got a wonderful surprise this morning. My juice buddy came by my house this morning on her way to work and gave me the prettiest flowers. Yes, it was a little sunshine, girlfriend. Thank you so much!
I have got to finish a couple of things before I leave. Please say a prayer today for my doctor and the nurses I will come in contact with. Also, please say an extra prayer for Bennie. He is having a tough time. Bless his heart he is covered in whelps and itching to pieces. So we will probably go by his doctor on the way to Vanderbilt.
As soon as I am able, hopefully this evening, I will post to let you know how I am doing. I am so thankful for your love, prayers, and support. My mind is clear and I am ready to get this done.

Quote of the day:

Your attitude determines your altitude.
Bennie’s favorite quote. He says that if the day goes anything like my attitude today, then it will be the best day!

Verse:

But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.
Isaiah 40:31

Thursday, April 7, 2005 4:53 PM CDT

Words cannot adequately express how very blessed I know I am. The love and support you pour out to me is overwhelming and amazing. God’s blessings rain down (good choice of words for a day like today, huh?) on me. Your notes, emails, and calls have filled me with the brightest “sunshine” even on this yucky day. We can’t fuss too much about the rainy day because we will enjoy the flowers that bloom so pretty from the rain they got today.

I want to share something with you. I saw this while I was out today running errands. When I am out I’m always looking up at the sky. I’m drawn to it. You never know when you will see that next “Doorway to heaven”. When I see them I just have to be still and soak it in. The beauty of it is breath taking.
Anyway, this is what I saw in the sky today. This was before the rain actually started. One side of the sky was dark and stormy looking. The opposite side was full of fluffy clouds and the sun was shining. It was an incredible sight to me because I thought of my life and different times of this last 2 years in relation to the way the sky looked. I’ve been in those dark, stormy skies and weathered that storm. Oh, it’s scary at times. But He was always there and carried me through the toughest parts. I’m not in the eye of the storm now. I’m somewhere in the middle, right where I can appreciate the safety of that beautiful sunshine, but still feel the effects of the storm. I think that is the perfect place to be on this earth. Because it keeps us on our toes. We aren’t allowed to become complacent and get the attitude of “I can do this on my own.”
So, this is a good place. Like I said in this mornings post…..
Life Is Good!
Yes, it is.

Okay, so now for the little girl pout here. I was disappointed yesterday. My dad and I were waiting for my mother to have her scopes done. Just talking and laughing together. I told my dad that I was anxious for Diva to get done and wake up. Because this is not something that I am use to doing…the waiting. I’m usually the one asleep. In my opinion the waiting is tough, tough, tough. I wasn’t anxious about what she was having done. No, I was anxious for her to wake up from the amnesia drug to enjoy her asking the same question 5,000 times. I couldn’t wait to be on this side of it. I am always the one asking the same question. So I was ready to giggle myself to pieces. Do you know what? She didn’t do that! Can you believe it? No, she didn’t. But she was cute the way she would try to tell us what the doctor told her. She was still pretty sleepy. So she would talk a minute and doze a minute.

I hope you all are having the best day ever, even though it is rainy here in Nashville. The sun will come out tomorrow. Also, it will be Friday and the weekend!
I am planning on posting again in the morning before I leave for Vanderbilt. I don’t have to be there until 10:30. So I should have time. Love to you all. Your love and support mean the world to me!

Quote of the day:

Life is precious. Handle with prayer.
Unknown

Verses:

I trust in You, O Lord, I say, “You are my God.” My times are in Your hand.
Psalm 31:14-15

Thursday, April 7, 2005 9:39 AM CDT

Life Is Good!

I saw this on the back of a car this morning. I know I was suppose to see this. I just feel it. Because normally Bennie takes Zach to school in the morning. But this morning I took him so I could talk to his teachers. The reason, Zach said that he was being bullied. I know, for those of you that know him you are probably thinking how crazy that sounds. Zach is the comedian, loves to make you laugh, loves life, is everybody‘s friend. He talked to me last night about this boy at school that pushes him and pulls the back of his hair. Hey, I thought hair pulling was a girl thing. I guess not. What’s so funny about that is Zach keeps his hair fairly short. So this boy has to really make an attempt to grab Zach’s hair.
Well, you know that is all I had to hear. Someone messing with my baby. Oh no, that won’t work. Nothing gets my feathers ruffled quicker than that. So, to make a long story shorter, I have now talked to numerous teachers (of course all of Zach’s teachers - which I absolutely love) and the assistant principal (he was so nice to me. Zach thinks he’s the coolest.). So everyone is aware of what is going on. Hopefully it will help. I talked to Zach before I left to let him know. At first he said that it really wasn’t a big deal. But I told him I wasn’t mad or upset about it. I was concerned. I felt it was my responsibility to let the school know what was happening so hopefully it would help keep another child from going through this. Then I reminded him of a time when he was younger. The first year he played basketball, he was barely old enough to even be on the team. One of the boys (the biggest on the team) decided to pick on Zach, not just once or twice. I watched from the side as this child picked on my son. When I saw that it was not joking around I decided to handle it. I marched right out there on the court (they were standing in a line doing lay ups, not playing a game). I talked to this boy and told him that I didn’t appreciate him picking on Zach, that they were teammates, and since he was older he should look after Zach. We didn’t have any more trouble the rest of the season.
I always tell Zach, people can mess with me. But just leave my baby alone. Now you know a little more about me. Another story down. But back to the bumper sticker.

Life Is Good!

Yes, it is. My life is good. Some of you will say how in the world can you say that. I can say it because I have been so richly blessed that every day I have here is good…no Great! You know if I hadn’t taken Zach to school and then stayed at the school for almost an hour I wouldn’t have seen that bumper sticker this morning. “All things work……”

My life is good. It’s more than I ever hoped or dreamed for. I am blessed with a wonderful husband, son, & daughter, the greatest parents, fantastic friends and family, and a Father that loves me more than I can imagine. So actually my life is GREAT!

Okay in answer to your question…no. I’m not worried about tomorrow’s procedure. This will actually be my 3rd stent so I know what to expect. Plus, I have known it would need to be done for about 2 months. It just took the doctors a little bit to realize it.
But please do say a prayer for me. I am really having a hard time with my stomach, no appetite, just sick feeling. Yesterday I only ate a handful of crackers, some grapes, and tea. I just couldn’t stomach anything else and only ate those to be able to take my medicine. My weight has been an issue, one that I am so tired of. Right now I am hanging on with all I’ve got to this weight. I know, I know, I’ve heard it a hundred times….”I wish I had that problem.” No you don‘t, not if it was because of this.

Oh, and you asked about the procedure. The doctor will scope my bladder and kidney. I’m sure it’s to see if there is anything to be concerned about, like damage due to the obstruction. Then he will place the stent. This stent will go from my bladder to my kidney. Because one of my “desmonsters” has wrapped around my right ureter the stent will help to keep my ureter open. Hopefully the procedure will only take an hour. Of course, I have to be there a couple of hours before to get my iv of hydrocortisone. I have to have this before any procedure because I am adrenal insufficient. Then I will be in recovery for a bit. I hope to be back home by 5:00. If I wake up quick and do what I have to so they will release me, maybe I’ll be home before 5:00!

Well, I will stop here for now. I have some things I want to get done before tomorrow. I will post at least one more time before I leave in the morning. Maybe even this afternoon. Just waiting for the words……

Oh, and in case you haven’t looked out your window, I don’t see a bit of sunshine from my window. So brighten my day with a note on my guest book or an email. I’ll send you one back to brighten your day in return. Lets spread some sunshine!

Quote of the day:

Let me be a bright light of encouragement to others.
Me

Verse:

The Lord will fulfill his purpose for me; your love, O Lord, endures forever - do not abandon the works of your hands.
Psalm 138:8

Wednesday, April 6, 2005 4:54 PM CDT

I am back home. My mother is home and her procedure went fine. The doctor took a number of biopsies from her stomach, duodenum, small intestine, and colon to check for Celiac disease. After doing the scopes he doesn’t think that it’s Celiac. He believes she has a severe allergy to wheat and gluten. Her homosystiene level is also extremely high. So she will have to start getting B-12 shots every month. Sounds like her daughter to me. Sometimes I feel like a big pin cushion. Especially when they stick me in the same spots over and over again. I can tell them which veins are worth trying for.
Thank you everybody for praying for the Diva and me today. I was just as calm as could be. I felt very good about everything. I got to meet her doctor and I liked him. Very nice man. Of course, he asked me a few questions, but I’m use to it. That has happened since I was a little girl.

I have a very sweet, dear friend that emails me the best notes. She has no clue how much her emails mean to me. I laugh, smile, and just enjoy reading her thoughts . I wish I was as entertaining as she is. But that is what makes us each unique and special. I was so excited when I got back home and saw I had an email from her. This email was so perfect for today. We both share a love of music. Today she shared an experience she had at a church. Part of what she shared were words to a song they sung at church that day. I emailed her back and told her I would be using those words in my post this afternoon. They will be my quote for the day because I want to leave you with that and my verse. The words mean so much to me. I hope you enjoy.

Quote of the day:

“I can see the sun, Peekin’ thru the clouds” (this was sung many times)
The rain is almost gone.” (This was only sung once)

So do you see why it really touched me?

Verse:

I will sing to the Lord all my life; I will sing praise to my God as long as I live.
Psalm 104:33

While you’re here on my website just click on over to my guest book and leave me a note. Or if you would prefer to email me privately that’s okay too. Send a little sunshine my way because the clouds are thick. You all are the best. Thanks for sharing this journey with me. I am blessed beyond belief.

**I added a new Hawaii picture. It while take your breath away!

Wednesday, April 6, 2005 8:57 AM CDT

Here is my heart
I’m ready now for anything
Lord here is my life
You can have everything
I’m ready to give You all of me
I’m ready to see what You can see in me

This what it’s like to surrender to You
When everything is laid down at Your feet
When it’s not about me
But it’s all about You

Words from “I’m Ready” Broken Frame

I know I used words from this song a few days ago in a post. But this song has really been ministering to me. This is how I feel. I feel this deep in my heart.

This morning I took Zach to school. Usually Bennie takes him, but he had to leave early this morning. So I got to see the sun peeking through the clouds. Zach laughed at me because I was acting silly and asking if he could see how beautiful the sun rising looked. He laughed and said that he couldn’t see the sun because it was behind the clouds. I told him that was as important just knowing it was there. I love seeing the sun shining through the clouds because then you usually see “Doorways to Heaven”.

I got Zach to school, science project and all. His science project was about genetics and how it has affect his family tree. It was pretty cool to do the family tree with him. Seeing how FAP has affected this family just makes it even more evident the blessing from God Zach is. Every person that had FAP in my family passed it on to each of their children. The odds are 50/50 that we would inherit it. But in my family it hit 100% until Zach. The good thing about an autosomal dominant syndrome is that it doesn’t skip generations. So this stops with me. Zach won’t have to worry about any of this for himself or his children in the future. That in itself is the best blessing in this world!

Well, I have to cut my post short for now. I have to get ready so I can meet my parents. My mother is having upper, lower scopes and a biopsy done so the doctor can verify she has Celiac Disease. Please remember her in prayer today. I love this amazing woman and I pray this will be an answer so she can feel better.

Quote of the day:

The strength that we claim from God’s Word does not depend on circumstances. Circumstances will be difficult, but our strength will be sufficient.
Corrie ten Boom

Verse:

You therefore, my son, be strong in the grace that is in Christ Jesus.
2 Timothy 2:1

I hear it’s going to be a stormy afternoon. So a little sunshine sent from you would sure brighten my day. Click over to my guest book. Oh and if you haven’t checked it out I have a couple of new Hawaii photos. Still working on the other stuff.

Tuesday, April 5, 2005 12:11 AM CDT

God's Cake

Sometimes we wonder, "What did I do to deserve
this", or "Why did God have to do this to me". Here
is a wonderful explanation!

A daughter is telling her Mother how everything is
going wrong, she's failing algebra, her boyfriend
broke up with her and her best friend is moving
away.

Meanwhile, her Mother is baking a cake and asks
her daughter if she would like a snack, and the
daughter says, "Absolutely Mom, I love your cake."

"Here, have some cooking oil," her Mother
offers "Yuck" says her daughter. "How about a couple raw eggs?"
"Gross, Mom!" "Would you like some flour then? Or maybe baking
soda?" "Mom, those are all yucky!"

To which the mother replies: "Yes, all those things seem bad all by
themselves. But when they are put together in the right way, they
make a wonderfully delicious cake!

God works the same way. Many times we wonder why
He would let us go through such bad and difficult
times. But God knows that when He puts these things
all in His order, they always work for good! We just
have to trust Him and, eventually, they will all make something
wonderful!

God is crazy about you. He sends you flowers
every spring and a sunrise every morning.

Whenever you want to talk, He'll listen. He can live anywhere in
the universe, and He chose your heart.

Life may not be the party we hoped for, but
while we are here we might as well eat cake...

I hope your day is a "piece of cake!"

Thank you “Shoe Queen” for sharing this story with me. I love it. So I had to share it. I have had some friends tell me they really struggle at times with this journey. I hope this story will help and encourage them. It put a smile on my face. His plan is perfect!

I am still working on some surprises for the website. I’m not a computer guru, so every little change I make is huge to me.

I am ready for Friday to get here.
I guess I can’t get out of this today. I get calls to ask me when I don’t post for a while…
6.

The sun is shining and that’s a good thing because you know what time of year it is? Yes, I know it’s Spring. It’s also the dreaded science project time….yuck! But this year Zach is kind of using me for his project. He’s doing his on genetics and how they affect a family. So, at least I can help him with that subject. It an area I know quite a bit about.

I hope you are enjoying the sunshine today. It’s beautiful!

Quote of the day:

Prayer unites the soul to God.
Julian of Norwich

Verse:

I will heal my people and will let them enjoy abundant peace and security.
Jeremiah 33:6

Now before you click out of here check out my guest book and leave me a short note. Talk about putting a smile on my face…that or an email would do the trick.
Thank you for all the ones I have read this morning so far. They are my little treasures.

Oh and I almost forgot....more pictures from Hawaii....check them out.

Monday, April 4, 2005 11:43 PM CDT

I can’t wait to share my day with you. This morning when I walked out of my house guess what I saw? I know you will guess the sun shine. But guess what else?………
I saw my first yellow Monarch butterfly. This butterfly flew around me all the way to my car. I continued to watch it after I got in my car until it disappeared. That is a definite sign of Spring! I knew this was going to be a wonderful day. It had to be after that sign.

This morning I went with Angie, my sister-in-love, for her CT scan and doctor appointment. I knew she was worried about what the doctor might tell her. I didn’t want her to be there by herself. I figure I have so much experience with doctors hopefully I could help ease her mind. She was afraid her doctor was going to want to do surgery, a tough sinus surgery. But our prayers were answered. She will be doing a round of inhalant antibiotic therapy plus a round of steroids. This will hopefully do the trick for her. She was so relieved when we left. We went to P.F. Chang’s for lunch. We had a wonderful lunch. Thank you Natalie. We enjoyed talking and sharing with you. I look forward to seeing you again. You were such a bright spot in my day.

Okay so you know I can’t get through an entire day without something medical. I had called this morning to schedule having my stent placed. It has been scheduled for this Friday. I have to be there at 10:30 so they can give me my iv hydrocortisone before my procedure at 12:30. The procedure should only take an hour. Hopefully I will be home by 5:00. Please be in prayer that this stent will be able to be placed easily and that I won’t be in too much discomfort. I don’t have an option this is to save my kidney function because of the desmoid around my ureter. I’ve had stents before in this ureter. So it’s nothing new. Just another step in the journey.

Please pray for my mother. She has to have tests and biopsies on Wednesday. Today and tomorrow she is having to do the wonderful prep to be ready for these tests. I feel her pain. I can feel the back of my throat getting thick just thinking about it. It’s no fun drinking all that nasty stuff. But she’s a Big Girl. I know she can do it. She just has to remember to put on her Big Girl Panties and maybe the Shoes too.

I know that the sun will be shining tomorrow. I’m just planning on it, haven’t looked at the weather, just looking forward to another beautiful day. But you know what would make my day even brighter? Yes, you guessed it. A note from you on my guest book. Or for those of you that are shy, an email directly to me (crowe725@aol.com). The only thing it will cost you is a minute maybe two of your time if you get on a roll with your note. So surprise me and flood my guest book and email. It will bring a smile to my face. It’s small things like that that make all the difference.

Quote of the day:

God would not have created us without a specific plan in mind.
Erwin W. Lutzer

Verse:

We are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
Ephesians 2:10

Sunday, April 3, 2005 10:35 PM CDT

So here is my heart
I’m ready now for anything
Here is my life
You can have everything
I’m ready to give You all of me
I’m ready to see what You can see in me

Lord, I know that You’re telling me something that I’ve never heard before
Whatever it is I’m ready
All of me is Yours

Lord, so here is my heart
I’m ready now for anything
Here is my life
You can have everything
I’m ready to give You all of me
I’m ready to see what You can see in me

This is what it’s like to surrender to Him
When everything is laid down at Your feet
When it’s not about me
But it’s all about You

Words from “I Am Ready” by Broken Frame

This morning I knew I would start this post with those words. I have listened to this song many times today. I sing these words with my heart to my God. I’m ready for anything. Here is my life. You can have everything. I give You all of me. I’m ready to see all that You see in me.

What a beautiful day today! Did you get out there and enjoy the sunshine? How many of you watched the sunset? Another masterpiece just for our pleasure. I had a wonderful day on my favorite day. You know I’m happy when I go to ss and church. God has blessed me with the most wonderful church family. I am so thankful for everyone at CRBC. You all are an incredible strength to me and my family. We love you!
After church we met my mother for lunch. Then Zach, Becky, Diva, and I went shopping…really just looking. We had fun just spending time together.

Later in the afternoon Bennie, Zach, Becky, and I went to the park and walked and played a game of PIG (basketball). We laughed and enjoyed being outside in the sunshine. I was soaking all of this in. Remembering it all, loving it all. So thankful for a day like today! It makes all the other stuff not so important. Because you know it’s always there in the background. I just choose to push it as far back as I can.

This evening I’ve had a hard time with cramping in my left foot and leg. This has kind of been ongoing since this all began 2 years ago. Some times are worse than others. Usually it means my electrolytes are out of whack. I’ll have to call my internist in the morning. Last week she said my results didn’t look bad. But that’s just the thing, the last time I was hospitalized, I had lunch with a friend on a Monday. I was fine. That evening I got deathly sick and within an hour knew that I would have to be admitted the next morning. That’s just how quickly things can change for me.

Well, it’s getting late. I would like to ask you to pray for my sister-in-love, Angie. She has to have a CT scan of her sinuses tomorrow. She is worried about what the doctor will tell her. I am going with her so she won’t be alone. I am praying for God’s strength and comfort for her.
Also, please continue to pray for my friend, Miz Peggy. She has had a tough time this week.

One more thing….have a wonderful, sunshine Monday. Hey, why don’t you buy yourself a bouquet of flowers. I did. I was in Sam’s this last week and saw the prettiest daisies. Anyone that knows me very well knows my favorite flowers are daisies and daffodils. So, I decided that would be a little “sunshine” for myself. It has been worth every penny I spent on them. Every time I walk through my living room I smile when I see them. So get yourself a little “sunshine”. I promise it will make you smile.

Quote of the day:

If the basis of peace is God, the secret of peace is trust.
J. N. Figgis

Verses:

May the Lord of peace himself give you peace at all times and in every way.
2 Thessalonians 3:16

Be still, and know that I am God.
Psalm 46:10

Saturday, April 2, 2005 11:50 PM CST

It’s quiet here.
Bennie, Becky, and Zach have all gone to bed. Josh and Alicia are still out visiting friends.
I like it when the house is quiet. I can slip away to my office, listen to my music, and catch everyone up on my day.
I’m working on my website. Making some improvements. So keep checking it out. Tonight I’m pretty excited I figured out how to put a picture on this page.

I hope you all had a wonderful (kind of chilly) sunshine Saturday. Did you enjoy the sunset? If you missed it I will tell you it was absolutely magnificent. I took pictures of it. It just amazes me, the beauty of it. God’s masterpiece, our gift. If you missed it today make a point of enjoying the sunset tomorrow. It’s a wonderful time to just be, just soak life in.

Some of you have asked how I felt after hearing the report this time. I’ve had a few days to digest it all. Like I’ve said already, I wasn’t surprised about the growth. I even told my surgeon that I could have told them the tumors had grown. I know it has scared my family. They would like to protect me from all of this. This is so very hard for Bennie. He is a fixer and he can’t fix this. He does anything he can every single day to make it a special day for me. I am a blessed woman to have him. Then there’s Becky. I know I could call her for just about anything and she would be there for me. I love this sweet girl like she were my very own, in my heart she is. I’ve enjoyed having her here with me this weekend. We have laughed and had so much fun. My Zach, my baby, my angel, my gift. He is my laughter. I am amazed and so proud of the young man he is becoming. He has a heart as big as Texas.

I go through a cycle of emotions. It depends on how I am feeling. Some days are just tougher than others. The thing I do is stay just as busy as I can. I call it running. Because I am running away in my mind from the pain and sometimes the uncertainty. But don’t misunderstand me, just realize that even the strongest person will have times when they have to rest, recoup, and move forward. I know it doesn’t mean my faith is any less. A lot of times when I am in that spot it is to learn a lesson.

I had a great day today. The sun was shining so wonderfully. I got to spend time with the Crowe side of the family. We all had brunch together today. I enjoyed that magnificent sunset. Tomorrow is my favorite day, Sunday! I am suppose to see the Diva hopefully after church. Gosh, I don’t know if I will be able to sleep at all tonight because I’m so excited about Sunday!

No matter what is going on or happening in your life I promise you can find good in it. The blessings are there for us to enjoy. That’s what life is about. So make Sunday the best day this week! I know it will be for me.

Please leave me a note on my guest book. Tell me what you think about the changes on the site. Let me know if there’s something you would like me to post about. Send a little sunshine my way. You know how I love it!

Quote of the day:

Some people are born great; others have greatness thrust upon them.
Unknown

For the verses I placed my name in it. When you read it put your name in. It makes it so personal and real. That’s how I think it should be.

Verses:

For he will command his angels concerning Stephanie to guard her in all her ways; they will lift her up in their hands, so that she will not strike her foot against a stone.
Psalm 91:11-12

“Because she loves me,” says the Lord, “I will rescue her; I will protect her, for she acknowledges my name.
Psalm 91:14

Friday, April 1, 2005 5:22 PM CST

Hi!

Absolutely no sunshine outside today. Lots of rain….for all the pretty flowers of Spring.

I heard from my internist’s nurse about my blood work. Good news this time. My electrolytes looked okay and my amylase level was down to 296. Two and a half weeks ago it had gotten up to 423! So that is very good news. It’s still pretty elevated. But not as badly. Prayers being answered.

I got a call from the “Team” captain. It is now the running joke with my surgeon and me. After we talked he thanked me for being on his ship. I think the next time I talk to him I’ll have to let him know that when I talk about teams I think of athletic teams, not ships. I would have thought he would also since he use to play for the NFL. Oh well, it just goes to show how we all have different mental pictures of things.

He talked to me about the growth in the tumors, changing my chemo and adding a medication (oncologist has to do this), my choking ureter and placing a stent to relieve it. I’m still waiting to hear from my oncologist. After I talk to him I can schedule the stent procedure.

But at 5:00 on Friday afternoon I know I won’t be hearing from anymore doctors until at least Monday.
I hope you all have a wonderful weekend. Hopefully we will see the sun tomorrow. I would love for you to send a little sunshine my way…..a note or email would be fantastic.

Josh and Alicia are here for the weekend. We’ve enjoyed spending the day with them.

Quote of the day:

Look to God and He will take care of you.
Me

Verse:

But seek first his kingdom and his righteousness, and all these things will be given to you as well.
Matthew 6:33

This verse is actual Alicia’s favorite. I wanted to use that today

Friday, April 1, 2005 8:28 AM CST

Well, it’s a rainy, cloudy Friday morning. But that’s okay. Because to enjoy all the Spring time flowers we have to have some of those rainy days. Plus, Bennie said that it looks like the rain will clear out later on.

I talked to my internist yesterday afternoon about my CT report and how I have been feeling this week. So I have to leave very shortly to guess what?……..
Go to my second home for blood work. She wants to check my electrolytes, amylase, kidney function, and so on. Hopefully the results will be back in this afternoon.

I’ll most likely post again later this afternoon. Sure would brighten this rainy day for me to have some emails and/or notes on my guest book when I get back home. How about a little sunshine?

Quote of the day:

Courage is firmly facing difficulties and obstacles, knowing God has promised to be with you.

Verse:

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.
Joshua 1:9

Thursday, March 31, 2005 8:59 AM CST

Good morning!

For today’s post I want to share how I felt yesterday after I had posted. I know this is still God’s plan and I have no doubt He is in every step of this journey. I am secure in my faith and belief. But I also have learned that it is okay to be tired at times. Even when you are on vacation you have times you are just worn out.
Yesterday afternoon I was just kind of numb. The words to this song really rang true for me……

On a day like this I wanna crawl beneath a rock
A million miles from the world and the noise
The commotion that never seems to stop
And on a day like this I wanna run from my routine
Run away from the daily grind that can suck the life right out of me
I only know one place I can run to
I , I wanna hide in You
The Way, the Life, the Truth
So I can disappear

Words from “Disappear” by Bebo Norman

This morning I am okay. I am straightening the house, getting ready for Josh and his fiancée. They are coming to spend the weekend with us. This will be our only chance to spend time with them before their wedding, May 28th.

I will post more later. I hope you all have a beautiful day! Please leave me a note on my guest book or send me an email (crowe725@aol.com). Send a little ray of sunshine my way.

Quote of the day:

Those who are God’s without reserve are, in every sense, content.
Hannah Whitall Smith

Verses:

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.
Philippians 4:12-13

Wednesday, March 30, 2005 3:31 PM CST

Good afternoon!

I’ve had a busy morning and it didn’t have anything to do with me. I got a call this morning from the school nurse about Zach. She said that his eye was swollen and red. She hadn’t ever seen anything quite like this. She was concerned he may have scratched his cornea. So while Bennie went to pick him up, I called the doctor’s office. His doctor’s first available appointment was at 4:15 this afternoon. When Bennie and Zach got back home at first he wouldn’t show me his eye. He said he didn’t want to “freak me
out”. I have to admit, I haven’t ever seen an eye look quite like that. I told him I was tougher than that. I had all kinds of things I had been through. His eye wasn’t going to upset me.

Commercial break……..

Let me just say, anyone that knows me, knows I love my mother. She is one of my best friends. We are attached at the hip. If either of us is having a bad day, don’t feel good, or so on, the other one knows it. This amazing woman is as strong as they get. She is a “Steel Magnolia”.
If you can believe it I was filled with an even deeper love and admiration for my mother this morning. This woman has watched me countless times being wheeled into surgery, unsure of the outcome. My mother never once showed me her fear or anxiety. But as a mother, I know all those feelings were and still do rage inside her. Diva, I love you to pieces. You are my hero!

Back to Zach………
This morning I was keeping myself calm, like I knew my mother would do. Because I could see that Zach was trying to be tough for me, even through his fear. I popped my contacts in and out the door we went. On the way to the doctor Zach wanted me to sit in the backseat with him. Let me tell you, it just tore me up to see my baby so worried. He was crying and told me he was scared he was going to lose his eyesight in that eye. He was also scared he would have to get shots in his eye. He had heard my mother talk about having that done for her eye. So he was very nervous. I asked him if he wanted me to pray and he nodded his head.
His doctor is the best. Bennie and I love the efficient way he handles every situation. He believes that Zach had an allergic reaction to something. He didn’t want to do a cornea stain to check his cornea today. He truly believes the medications he put Zach on today will take care of this. If anything changes we are to call him and he will do the test at that point. He has to stay on this medicine for at least 2 to possibly 8 weeks. He has had his first dose a couple of hours ago and we can already see a difference.
Thank you God for my baby being okay!

I know you are all waiting, like I have been, to hear from the doctors and to get my report. Well, wait no more, the results are in.

I was not surprised by what I read in the report, at least not completely. When I talked to one of my doctors and a nurse I was very calm about the whole thing. Just matter of fact. Like a captain wanting to get the game plan together. I have known that I would have to change my treatment. With these desmoids it’s just a trial and error on what will work. What works for one desmoid won’t necessarily work for another. That’s not just from person to person. But the treatment that works for me now might not do the trick for another one.

I already had a little heads up from my buddy I saw right after my scan was done. My GI doctor called me this morning. He told me that the tumors had all grown since the previous scan. Sad news, I know. I also have thickening of my stomach, which he will look at when I have my next upper scope. He’s not sure what it could be. But he is more concerned about the growth and what it is doing. One of the desmoids has wrapped around my right ureter, not a good thing. So I will definitely have to get another stent to protect my kidney. There is concern about being able to put a stent in. Please pray that they will be able to do this.
I still have my gallstones and now I also have stuff going on with my gall bladder. So this was not a good report. Probably second most disappointing report next to the one that first diagnosed the desmoids.
But I will not be brought down. Do you know why? Because my faith, comfort, and belief are bigger and stronger than that. You want to hear something funny? Just yesterday I told my “soul” sister that I would probably hear the word “shrinkage” just before my birthday. I figured since I have promised everyone a party when I hear that word having one in July would be a double celebration! Turning 40 and shrinkage! I’m ready for a blow out of a celebration. How about you?
So don’t let this bring you down or make you doubt God’s hand in my life. He is still working and blessing me everyday. Just look out your window….the sun is shining just as bright as can be! What a beautiful, glorious day! Spring is here!

Please remember to leave me a note on my guest book or an email. I love those little surprises.

Another please here. Please remember my friend, “Miz” Peggy in prayer. She had surgery this morning. Hopefully she will get to come home tomorrow.

Quote of the day:

Open your heart to the glory God has for you.
Me

Verse:

As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him.
Psalm 18:30

Monday, March 28, 2005 9:27 PM CST

Guess what the first thing I noticed when I left the hospital today?

The sun was shining! I’m so thankful for that piece of comfort.
God knew I needed to see that sunshine after my scan.

Before I left, I stopped by to see one of my friends, who also happens to be one of my doctors. He had told me he would look at my scan and let me know what he saw. So since I was just around the corner from him I stopped by. He took a quick look at my films and gave me some news. None of it was a surprise. Before I go any further, I don’t have the report yet. I just have a couple of answers right now. At least one of the tumors has gotten slightly bigger, which is causing problems with my kidney. Hopefully they will be able to place a stent to help. As I said, nothing he said surprised me. I already knew in my heart. Tomorrow I should get a full report and know more about what I am dealing with. In the morning I will be calling my oncologist to have my appointment moved up. April 20th is too long to wait to make changes. I’ve got my “Big Girl Panties On” and I mean business. (Just a side note in case somebody new is reading this entry…I have a saying, “Put your big girl panties on and deal with it”) It’s time to step up the game.

When I left the hospital today I told you the first thing I saw was the beautiful sunshine. I looked up at it and smiled a huge thank you! God knew that I needed to see that sunshine just then. What a gift…what a blessing!

By the way, thank you for all the rays of sunshine you all have sent me today. Let me tell you it has been very much appreciated, like getting a hug from each of you. I will tell you I have had far more emails than notes. I don’t care how you send it, just send it. The devil will not take MY sunshine. Because it’s mine and I’m not turning loose.

Short post for now. But it is the second one of the day. I’m very tired. Scan days are usually very tiring for me. It’s time to be still…to just be.

Quote of the day:

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.
Albert Einstein

Verse:

“Do not let your hearts be troubled. Trust in God; trust also in me.”
John 14:1

Monday, March 28, 2005 11:11 AM CST

Well, it’s a rainy Monday morning. I’ve already been to Vanderbilt and back home again. While I was there I checked in radiology to see if there was any chance of being worked in this morning…since I was already there. No such luck. Oh, I was told I could sign in and wait, but they are rarely ever able to work someone in earlier. So, I’m home again.

My GI doctor and I talked. I almost made it through the whole visit and I was thinking, “Yes”. But, no, I got in trouble. I almost made it through. Then he asked me the dreaded question, “How are you doing with the new medication?”. So, I had to confess that I hadn’t taken it. Then I explained to him how much I hate taking medicine. Unless it is absolutely necessary I avoid it. I also told him that I want to do what I need to and what the doctors can to take away my pain and make these monsters in my belly go away. But at the same time I don’t feel comfortable taking a bunch of medicine to mask the pain. That’s not a solution and actually could become a problem. I don’t like to hurt like I do, but I am very in tune with what is happening in my body. So, if there is a problem I know quickly. My fear with masking this is that I could be in trouble before I would know it. He assured me this medicine acts more as an aid in digestion than pain relieve. I told him I would try it now that I understood what it is. He said that an added bonus was it might actually stimulate my appetite. I laughed and said that would make a lot of people happy. I have a follow up with him in a month. He said that he would look at my CT this evening or tomorrow and give me a call.

Please continue to pray that God places the best doctor in radiology to read my films this afternoon. I am praying for strength and courage to assert what I expect from this scan. I need specific measurements and a detailed report. So I need a very special doctor to read my films and write the report.

Thank you for all the emails and notes on my guest book. I checked those the first thing when I got back home this morning. So please keep them coming the rest of the day. For those of you that have said you can’t write something wonderful like “Miz” Peggy or some of the others don’t let that stop you. It’s not about poetry, it’s about love and support. Just let it flow from your heart. You can leave it on my guest book or send me an email (crowe725@aol.com). I promise it will make the “sun” shine even on this rainy Monday!

Quote of the day:

If you have faith and trust in God, He will give you peace.
(Do you have peace? I do.)

Verses:

You will keep in perfect peace him whose mind is steadfast, because he trusts in you.
Trust in the Lord forever, for the Lord, the Lord, is the Rock eternal.
Isaiah 26:3-4

Sunday, March 27, 2005 4:13 PM CST

HAPPY EASTER!!!!!!!!

I hope you all are enjoying time with your families and friends. Even though the sun has been hidden from us today I have enjoyed being with my family and friends.

I love you more than the sun and the stars that I taught how to shine.
You are mine and you shine for me too.
I love you yesterday and today and tomorrow.
I’ll say it again and again.
I love you more.
Chorus from “More” by Matthew West

I love this song. When you read it really think about God saying this to you. It’s just incredible. I can’t put into words how I feel about it. It’s overwhelming and amazing.

Okay now I am going to ask each of you that read this post to do something for me. I’ll say it with a please because my mother brought me up right and also it’s just proper etiquette.
Will each of you that read my post today and tomorrow please leave me a note on my guest book or an email. I am asking you to do this for me as a show of support and comfort as I go into Monday. Just a little boost of support before I go in to battle. The “sunshine” effect is an added bonus.
I can’t wait to read all my notes and emails!!!!!!!!!!!!!!

Quote of the day:

We must make the most of this day!
Bro. Frederick Phanco

Verses:

I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.
Psalm 18:1-2

Saturday, March 26, 2005 8:51 AM CST

I’m having some tough days.
But I am hanging in and hanging on till Monday.
I am praying that the best radiologist will read my report, that he/she will give specific measurements and detailed information about what’s going on in my abdomen. I need him/her to look at me as a person not just another procedure in their day. I can tell the doctors what I’m sure of. But they need to read it also. So please say a special prayer that I will get some help and answers on Monday.

I’m sure the sun will be shining bright today!
Tomorrow is my favorite day and Easter on top of that!!!!!!!!!!!!

Quote of the day:

Life is short, and it’s up to you to make it sweet.
Sadie Delany

Verse:

He brought me out into a spacious place; he rescued me because he delighted in me.
2 Samuel 22:20

Enjoy every part of this day!!!!!!!!!!!!

Thursday, March 24, 2005 9:10 AM CST

Good morning!

I hope you enjoy a giggle from this first part of my post today. It’s the girlie side of me.

Isn’t it great how having lunch with your girlfriends can just brighten your day? Even on a cold, cloudy day. Of course, getting the prettiest pair of “Princess” shoes was definitely a bonus! I’ll bet you couldn’t guess, they’re PINK!

Okay so that’s the funny, girlie side of me.

I made up my mind about a few things yesterday. The first one was a decision to move up my CT scan. I had one scheduled for April 20th. Yesterday I changed it to this Monday. My reasoning is that I have been feeling so bad and having such a tough time. I want to know what is going on inside now rather than wait until the 20th (feeling like this until then). Also, by having my scan done now it will ensure that my oncologist will have the report in front of him for my appointment on the 20th. If I had my scan on the same day he would only have access to the films, not the report. The report is as important as the films.
So I am ready for Monday to get here. It will be another Vandy day. Of course I couldn’t have my two appointments together….no. I have an appointment with my GI doctor at 8:45 and my CT scan at 4:30. But I’ll check while I’m there to see if they can squeeze me in earlier. That would be a blessing.
This scan is important to me. Big decision time. I’m ready to step up the game. I’m ready for shrinkage and a big party! I’m ready for pain-free days. I’m ready to celebrate!! I hope you’re ready too!

I don’t see even a hint of the sun outside my window. So a note or email from you would surely make the sun shine bright inside! Also, if you haven’t seen the new Hawaii pictures check them out.

Quote of the day:

May the most you wish for be the least you get.

Verse:

The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace.
Numbers 6:24-26

Tuesday, March 22, 2005 11:04 PM CST

********NEW HAWAII PICTURES!!!!!********

Tonight I just want to share a few quotes and verses with you. The quotes are from “Life’s Little Handbook of Wisdom”. This book of quotes was given to me by a dear friend (the best orthodontist) years ago. Thank you for sharing it with me.

Faith does not demand miracles, but often accomplishes them.

God will either protect you from hardship or give you the strength to go through it. You win either way.

Hold onto friendships tightly; release possessions easily.

A happy heart makes the face cheerful.
Proverbs 15:13

Your love has given me great joy and encouragement.
Philemon 1:7

God has made everything beautiful in its time.
Ecclesiates 3:11

I will always have hope; I will praise you more and more, Lord.
Psalm 71:14

It’s quiet here at my house. The boys are sleeping…hopefully I will be soon. Sweet dreams to all of you.

Tuesday, March 22, 2005 4:19 AM CST

Take All Of Me - Palisade

Take all of me
Take all of me
Take everything that I’ve created
Everything that I can be

Take all of me
Take all of me
Finish this good work You started
So I can be exactly what You planned for me to be.
Take all of me

I know some of you are thinking, “Boy she’s stuck on starting her posts with pieces of songs.” I am kind of on a roll with it, aren’t I? I’ve told you that music really ministers to me. I listen to it through out my day. When I get “stuck” on a particular song I like to share it with you. “Take All Of Me” and “Ready To Fly” are incredible songs. I do some powerful praising with them.

Now on with the post…

I have already posted to you about having some tough days. I’m still working through them. I will have brief moments where I think it's getting a little better. Then, boom, I get knocked down again. I miss the days when eating was something I didn’t have to think about. When it was something to look forward to, not think so hard about.

Okay, so you know me, I have to tell you that even with all of that stuff I’m dealing with I still want and need to praise God. Yesterday I enjoyed the beautiful day and the sunshine. Wasn’t it wonderful?
Even though I have been having a tough time God’s grace and love are so evident around me. Every day He continues to bless me, even in the midst of these tough days.
I am excited about new opportunities to speak. I have been asked to speak at 3 or 4 different places in the coming weeks. It’s just incredible to me to be able to tell you how excited I am about something that use to terrify me to pieces. Not anymore! It’s a God thing!

This is a short post but that’s okay. Only a few words for now. I know more will come later. I’ve been up for a few hours. So I’m going to try to get a little rest now. It will be time to wake Zach up for school soon.

I hope you have a blessed day!

Quote of the day:

When we see God as He is, we automatically see ourselves as we are.
Beth Moore

Verse:

Faith is the substance of things hope for….
Hebrews 11:1

Sunday, March 20, 2005 3:44 PM CST

Disappear
By Bebo Norman

If I don’t bring You glory
If I don’t bring You glory
If I don’t bring You glory
Cause I, I want to hide in You
The way, the life, the truth
And I can disappear
Cause all there is to see coming out of me
And You become clear as I disappear

I wanted to start today’s post with those words. This is a wonderful song that speaks what I feel. I don’t want any of this to be about me. This is about God’s glory and how He is working in my life and through my life. It’s about sharing this wonderful journey He has chosen for me.

I know I had promised to post yesterday afternoon when I got back home. I actually started the entry and typed a page and a half. But then I had to do some catching up around the house…mama stuff. So, I deleted what I had started yesterday. I knew it wasn’t the post. When the words come it’s unmistakable. Some days are just catch up days to let everyone know what this doctor said or how this appointment or test went. Then some days are wonderful words given to me to share.

So, I better do some catching up for you. My cortisol level came back at 2.7. As far as my doctor is concerned that is still basically non-existent. But for me it’s a step in the right direction. Because it has been 1 point something. So maybe this is the start of Sleeping Beauty waking up.
My amylase level is now 423! Just a few weeks ago it was 333 and that’s pretty high. So my doctor wanted me to increase my hydrocortisone from 20 mg a day to 120 mg a day! He said that if some of my problems were adrenal related then this would help. He also told me that by taking this increased dose I might even feel euphoric because of the boost. Of course, you know adding medicines or changing my medicines is just something I don’t like to do. But I was a trooper. I did it. I had to call him on Friday to let him know how I was doing.
Friday morning I called bright and early to give him the verdict…..no help. But I didn’t believe it would. I believe the majority of these problems and issues are desmoid related. So they aren’t going to be resolved until we hear the word I am longing to hear….Shrinkage.

I told him that I actually ended up feeling worse and taking pain medication to make it through. Any change in my normal routine can throw me into a tail spin with my health. So if you ask me to do something with you, for you, or so on and I tell you I can’t, I am not just blowing you off or too busy to help. It’s because I have given it thought, as I have to do now… can I do that? What are the time confines, eating issues, change of schedule,…just stuff…stuff that even with all my past surgeries I was blessed not to have to think about. But now a few days from my normal environment can really loop me. When I decide to go away for a few days I know that I have to set limits and realize that if I reach my limit I have to get back to my “comfort zone”. I pray about this a lot because it is very hard to handle not being able to just go go go. It’s another lesson on the journey.

So I’m back to my normal dose of hydrocortisone. After I heard what my amylase had jumped to I left a message about it for my GI doctor’s nurse. Now this is just another one of the little, but oh so important reasons why my GI doctor is at the top of my list, he called me back himself. I wasn’t expecting it, but I should have know he would. We talked about what was going on and what the options are. Basically, it’s to keep trying to just deal with the eating issues, high amylase level and the other. Or make a decision to give my digestive tract a chance to rest and heal. That would mean me committing to at least 2 weeks of TPN. If I do that it would give my digestive tract a chance to rest. But it also brings a lot of other possible issues with it. TPN would be my complete nutrition. People on TPN people still experience hunger and thirst. The times I have been on TPN before I didn’t miss the actual act of eating. It’s funny, I missed tasting things. So I became a “licker”. I would lick crackers and chips. My buddies really enjoyed that. They were sweethearts, always surprising me with different chips and crackers to taste. If I have to go on TPN this time I would have to make a stronger commitment. No tasting this time around. Because even the smallest taste still has to work through your digestive tract. So it would defeat the purpose.
If I had to give him my decision when we were talking on the phone it probably would have been, “Lets do it!” I say that because I just wanted to feel pro-active. I felt that if I at least tried anything it would be better than just waiting and hoping. I wanted to take a couple of steps and get out of the box. Either it would help or not. But at least we would have tried something.
Before he got off the phone with me he let me know that he would be gone this next week. If I made a decision to try TPN while he was gone I could call his associates and they could set it up. Well, when I hung up I thought I had basically made up my mind. Then I called Bennie (this was while I was at my parent’s house) to talk to him. He was great and we talked through all of the junk. He made a lot of sense and reminded me of how hard and taxing TPN is. Also, how hard it is to start eating again after TPN. So for the next week, while my doctor is gone, I am really watching my diet and other stuff. I have an appointment to see him the following week. If I’m not significantly better then I’ll make a decision.

I guess I should try to open up to you so that you will be able to understand why I was so quick at first to jump at TPN. It’s not a flip decision.

To help you understand how I’m feeling and what I am thinking I have to be blunt, very truthful, open up and share. I’m very good about sharing my smile and telling anyone I’m fine or hanging in there. That’s the easy, quick answer. There aren’t any strings attached with those answers. It lets the person asking move on and be okay. But for you that read here I am committed to being as open and honest as I know how to be. How this feels is not something that I am very good about sharing. I guess it’s another lesson, huh? So here is how I feel right his minute……..

I hurt…….

When it comes down to it, it’s just that simple….everyday I hurt. Some days aren’t as bad as others. Today, my favorite day, is actually a tough one. But going to church and being with my friends is a true bright spot in my day. Your notes, emails, cards, calls, and so on are another source of encouragement to me. It brings sunshine into my life even on the cloudiest of days.
Typing those words are not easy for me. It opens up and to me I have trouble because I am a optimistic, positive person. To tell you how I am feeling inside means I have to say things that sound negative in my ears. So please be patient with me on sharing this.

I still have more to share. But I am going to stop here for now. I hope you are enjoying your Sunday. The sun is out! Daffodils are blooming everywhere! Don’t you just love it? I do!!!!!!!!!

Quote of the day:

God is attracted to weakness. He can’t resist those who humbly and honestly admit how desperately they need him.
Jim Cymbala

Verse:

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time.
1 Peter 5:6

Friday, March 18, 2005 11:04 AM CST

Happy Friday!

I’ve been away for a couple of days. Zach and I spent a couple of days with my parents. We just relaxed and enjoyed being together. You know that’s always good for the soul…a little extra Mother love (Big Daddy, you too).

While I was there I didn’t have my computer so that’s the reason for my absence of posts. Plus the words are just now really trickling in. So here goes.

You know how I love to listen to my P & W music. It just lifts my spirits. Of course, whenever I get stuck on a song or one is really working on me I love to share it with you. Just another way to let you know what’s going on with me. I absolutely love this song.

Ready To Fly
(chorus)
I’m ready to fly
I’m ready to soar
I’m ready to leave this world behind
I’m ready to open up the door
I’m ready to fly
I’m ready to spread my winds across the sky
I think it’s time
I’m ready to go
I’m ready to fly

Before I go any further with my post I want to ask you to do this for my mother. Please pray for her. I just finished talked to her on the phone. She has been back to her retina doctor this morning. The doctor had to give her a shot in her eye, plus an iv. She will probably have to have surgery on her eye next Friday. Also, on Monday she has to have blood work done to check her for homosystene (sp) leukemia. Please pray for my mother. I depend on her so much. I love her and it hurts so much to have her go through this. So lets pray her through it.

I have to close my post here for now. I have to take care of some things that can’t wait. But I have a lot more to catch you up on. I won’t be able to post again though until probably tomorrow afternoon. Sorry for the delay.

Quote of the day:

Because I am the loved creation of so great a Maker, I cannot help but be a person of great worth.
Beth Moore

(I absolutely love that. That’s a quote we need to say to ourselves to realize our worth in God’s eyes.)

Verse:

Humble yourselves before the Lord, and he will lift you up.
James 4:10

Thank you so much for your notes and emails. You just don’t know how much of a boost they are to me. They are special little blessings.
I hope you all have a beautiful w

Tuesday, March 15, 2005 3:20 PM CST

I know it’s been a few days since I have posted. But you know I only post when the words are there. I have a few things to share with you today.

Let me start with giving my testimony the Sunday before last. Quite a few people have spoken to me about the testimony I gave. Not when I was saved, but how God is working in my life. Many of you have told me how much it meant to you to hear that encouragement. Like I said when I testified, “I could tell you about being saved when I was 12 years old. But I really want to share how God is working in my life right now.”
For me that was important. Now don’t get me wrong, it was important being saved when I was 12. But that was over 20 years ago. So, I wanted to share all the wonderful ways He is working today in my life.
I need to add here that God needs the glory for me being able to stand in front of the church to share my testimony. Because without Him I wouldn’t have been able to utter a word.
My finally thoughts on giving your testimony….ALWAYS be ready! You never know when your “turn” will come.

Okay so on to another subject.

I love you guys and gals to pieces. Your emails and notes really brighten my day. Please keep them coming. I love how different ones of you will email me privately to ask if I will share certain things in a post. Please feel free to continue doing that. Sometimes it helps the posting process. You know me, I’m pretty much an open book. I have tried to be open about this journey I am on because hopefully my openness and honesty will be an encouragement to others out there.
Some of you love to say that what you are going through can’t compare to me. You love to ask, “How do you do it?”
If you have read very many of my posts you will already know my next words. You can’t compare my journey to yours. Yes, we all have a journey. God knows what you can handle (always remember that’s what you can handle with Him). So one person’s broken toe could be as bad as my situation in the realm of what they can handle. Does that make them a baby? Absolutely not! We are all made different for a reason. I embrace this journey and am glad to walk it. Now that doesn’t mean that’s all I am. No, I am so much more.

Okay in answer to some of your questions about these “monsters” in my belly. That’s what I jokingly call them sometimes. The following are questions I have been asked, with answers to each question.

* Can you tell they are there?
Yes, I can feel them inside and actually if you felt my stomach you would be able to feel them.

* Do they hurt?
Simply answer……yes.

* Are these different then the tumors you have had in the past?
Yes, actually they are. In the past I just had to deal with one tumor at a time. This time there are multiple tumors, pressing on multiple organs, and more scar tissue. Basically my insides are concrete due to all the scar tissue. The normal person could have a football size tumor before they know something is up. That is because their abdomen isn’t riddled with scar tissue. Their organs can move and compensate for the room the tumor takes up. For me, the smallest of tumor can cause a problem.

* Why is eating “homework” for you?
I use the term “homework” because after going through the last 2 years a lot has happened to change and interfere with that. Everything from TPN, being malnourished, thrush, and so many other things. I could write a book just about the first part of this last 2 years. I haven’t ever gotten the “Oh doesn’t that sound great” or “I’ve gotta have that” feeling back when it comes to food. Oh if you pick a restaurant then I know I can find something to eat. Just don’t ask me to pick the place.

Eating…what was once so easy. Yes, easy. I have always been very blessed. After my colectomy (just before I turned 15) I was told I wouldn’t be able to eat some things. But you know how teenagers are. I said I was blessed because I have always been able to eat whatever I wanted. No problems. That has now changed. Now I have to think…can I handle that? What do I need to eat to counter the effects of what I just ate? Have I drunk enough? Will that cause a blockage? Do I need to take medication? And on and on. Now those and other questions run quickly through my mind, in a blink. But that blink use to not be there. Just another step.

Okay that’s all for now. This really is just a bunch of rambling. The real words will come later. Just thought I would answer a couple of your questions.

Oh, and your favorite question…..what’s your level?
Today it’s a 5. Energy level is in the dumps…maybe it’s the weather.
I have to be at Vanderbilt in the morning at 7:45 to have blood drawn to check on “Sleeping Beauty”. I’ll post when I hear from the doctor.

Quote of the day:

If you have faith and trust in God, He will give you peace.

Verse:

You will keep in perfect peace him whose mind is steadfast, because he trusts in you.
Isaiah 26:3

A note on my guest book or an email from you would bring out the sun for me. Make it shine bright!

Saturday, March 12, 2005 11:27 PM CST

Well, I did something today that I haven’t, believe it or not, ever done before to myself.

Before I go any further let me interject here that I didn’t jump into this without some thought. I actually thought about it for a few days. Then today I made up my mind. I decided it was just crazy to get up early Monday morning (Zach’s on Spring break) and drive to Vanderbilt for a 2 second appointment. I mean, after all, it was only 2 stitches. I haven’t ever removed stitches from my body before. I guess because usually I have way more than a couple of stitches. But I have removed them for friends. Really it’s not a big deal. I just got out my handy dandy surgical scissors and tweezers and zipped those babies right out. So that took care of one of my days at Vandy this week. But there’s no way to get out of the appointment on Wednesday. I go in for my routine check on “Sleeping Beauty”. You know that’s the one I love. The one where I have to be at the lab before 8:00 am for blood work and see the doctor afterwards. I am praying for good news. It’s time for that gland to wake up!

I hope you all had a chance to get out and enjoy your Saturday. Here in Nashville it was a gloriously beautiful day. My thermometer read 83 degrees at one time today. Talk about serious Spring fever!!!!!
Oh, and did you catch that sunset? Absolutely fabulous!!!!!!

Well, I am going to get some rest. You know tomorrow is my favorite day!

Quote of the day:

When you are anxious, it means you aren’t trusting God to take care of you.
Stormie Omartian

Verse:

Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you.
1 Peter 5:6-7

Because a couple of you have emailed…………….6

Friday, March 11, 2005 8:42 AM CST

"You have gone through ups and downs on your knees.”
“Because you’re called to bear the load faithfully, week after week.”

“Hold on to the promise.”
“Hold on as you walk this.”
“Hold on to the dreams that can come true.”
“Keep holding on to the One that’s holding on to you.”

portion of “Hold On” by Thomas Payne

That is just a taste of another one of his songs. I thought it would be nice to start the post with those lyrics. When Thomas sang at my benefit concert he ended the night with that song.

Okay, good morning. I don’t see the sun out just yet. But it is still early in the day. I know you are wondering how I am doing this morning. Some of you are even trying to guess my “level”. That is still one of the favorite questions. Some of you make me giggle when you ask. It’s like the answer is top secret and by you knowing how to ask the question, “What’s your level?” you’re on a mission. I guess, that actually could be very true. Since I don’t openly offer that information unless asked. It’s not because I want to hide it, not really. It’s just because that isn’t what I am all about. But I do understand that in order for you to feel more effective in your prayers you need to know. Plus, for others to understand how God is working they need to know.
When the “Best Life I Could Ever Imagine Living” kicked off this past weekend…actually it began as “The Best Day Since Hawaii”, I was so full of energy and excitement that my hands shook, heart raced, and my legs trembled. I actually prayed that God would calm my heart, hands, and legs just a bit so I wouldn’t appear nervous. I was so excited and talked almost non-stop through the weekend. I don’t think Bennie has ever heard me talk so much or so fast. I told him I was quiet as a little girl, so I was making up for lost time.
Through the weekend and until Tuesday my “level” was probably like a 2. Not the usual for me. I’m use to a normal everyday 4 on a good day.
Since Tuesday the “level” is back to what it was. No, that doesn’t make me doubt my Lord. We are still on the right track. Every single day can’t be perfect and pain free here on this earth. If it were we wouldn’t be here. We would already be walking the streets of gold.

I was thinking about all that is happening right now in my life, about how God is working. Then I had a thought….isn’t it cool how this is all happening right at Easter time? I think so.

Also, I know good things are coming. You ask how I know, when no doctor can give me the word I long to hear. I know because I have faith.

Plus, I am getting my house “ready” in anticipation of the day I hear that word….shrinkage. Because you remember what I promised when that day comes?…….HUGE PARTY!!!!!!!
Bennie and I started talking about doing this or that to the house months ago. But you know how it is, things get in your way, life gets busy. Well, last Saturday, when this change took place we started doing some of the things we have talked about. Things I now realize were keeping me from being ready to celebrate.
I feel it coming….and we will be ready. So dust off your party shoes. Get ready! Don’t disappoint me. You’re all invited.

Quote of the day:

Happiness must be grown in one’s own garden.
Unknown

Verse:

I can do everything through him who gives me strength.
Philippians 4:13

Wednesday, March 9, 2005 4:20 PM CST

These last posts have been the start of a deeper, more personal sharing. I am amazed when I finish each post and see how it has flowed. Let me tell you, it’s not me. I haven’t ever been able to share thoughts with the ease that I am doing now. Once again, giving God the glory. As I continue to share with you in this post you will see how these words are from God, what He lays on my heart to share. In the case of yesterday, sharing a glimpse about me that I haven’t ever shared. A secret. A chink in my armor. Something I have struggled with off and on since I was, I guess 16. But before I go any further… I know, you are saying, “No, no, tell us what it is.” Before I do that I must share that I am excited about the battle I won yesterday. My armor is like new again, no chink. I know I will have to stay strong, protect my new armor, and prepare to fight when the enemy tries to attack me.

Okay, whew….you just have to understand I have not ever had any intention of sharing this with any of you. This is my secret. One that I knew was wrong, but something I now understand better. Another step in this journey. Before yesterday’s post I could not have shared the words that I did,

“I will admit right here that I too am guilty, yes me. But in the past. I didn’t completely love this wonderful piece of art that God created…me.”

But when He put those words in my mind I finally realized how sad it must have made Him to watch me struggle with my secret. I have been blessed in that I haven’t struggled with it every single day. In fact, I have been blessed at times, with long stretches of freedom from that burden. The burden I laid down completely yesterday and walked away from was my struggle with an eating disorder. Boy that is so hard to put out there in the open for all to see. Talk about being stripped. But that is part of this journey also. I am able to do this because there may be someone out there like me that is struggling with that same burden. If reading my thoughts can help them, what a blessing to me!

Like I said I have had stretches of time that I didn’t let it control me. In fact since January 2003 I have been so blessed that it hasn’t been a part of my life at all. I guess I have had to cope with so many other issues that this one just wasn’t a problem. Just living every day was so much of a blessing. Trying to figure out how to get better and live my life. But you know whenever we are doing good satan likes to rear his head up. He likes to try to shake you down. At least that’s how I look at it. Once again, he tried to shake me down. Actually caused me to doubt myself and fall back into that old trap.
But like the song Thomas wrote and sings goes, “Lay down all your troubles by the river side. Lay down all the worries weighing on your mind. Lay down all that you may hide. Lay down all your earthly pride. For Christ can’t come and make it right until you lay it down.”
See why Thomas’ music speaks to me? He writes about things we all deal with in our lives. Not a single one of us is perfect. If we were then our name would be Jesus. My name definitely isn’t Jesus. But I do work each day to get closer to the day when I will be like the story I posted before about the refiner knowing his silver is ready when he sees his reflection in it.

As I said, I wasn’t bother with my secret since January 2003. A very long, thankfully so, stretch that isn’t usual with eating disorders. But a couple of days before we came home from Hawaii it got its hooks back in me. I put up a fight. I truly did. I believe that is why I have reached the next step in this journey…it’s about standing firm, being strong. I know I haven’t ever felt this self-assured about laying something down. I was tested last night, but didn’t stumble. I stubbed my toe just barely and walked on. Victory!!!!!!!!!!!
I know this makes me a target for satan. It may also make me a target for anybody else that would like to tear me down. But you know what? I won’t backtrack or change a word of this before I post it to my journal. God has laid this on my heart to share. Because contrary to what my friends and I like to have fun joking about….”It’s not all about me.”
No, it’s about sharing what God has laid on my heart. I have always believed if I could help at least one person with a struggle they are trying to deal with in their lives by sharing my journey, then every step of the way is a bonus. In the past I have always said it would make the journey worth it. But from this day forward I have decided that it is actually a bonus. Because walking this holding God’s hand has made it worth it. So to help people, if only one, is a bonus, a gift.

I need to add here that until recently I haven’t had to struggle with my disorder. So, for anybody that would like to tear me down by thinking or saying I did this to myself; the weight loss problems, trouble eating, or any other thing, I will very quickly say, “You are so wrong.” I can say that with conviction in my heart. My eating disorder has never been about a weight thing. I haven’t ever, thankfully, had to worry about my weight. A close friend has talked to me on numerous occasions about other issues I have had (like taking all kinds of medicine - - I still put up a fight unless the doctor proves to me I have to take it.). She has told me that it’s a control issue. She is right. This is a control issue also. It never has had anything to do about weight. But I laid that burden down by the river side and walked away holding God’s hand.

Quote of the day:

Don’t waste precious time wishing for what you don’t have. You probably don’t have it because it’s not best for you. Appreciate the smallest of blessings in your life.
Stephanie

Verse:

“O God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water”
Psalm 63:1

Tuesday, March 8, 2005 1:57 PM CST

This post may look a little different than previous posts. I have shared with you that I only sit down at my computer when the words come to me in their unmistakable flow. So this entry is the one I told you was coming. I have no idea how long it will be. My guess…pretty lengthy. Why? Because I wrote thoughts down throughout the day. Sometimes I only had enough time to write a word or two as a reminder for when I could sit down at my computer. This is a gathering of all my thoughts and some of what was going on yesterday with Zach.
I have decided to place extra spacing between sections. My reason for that is to help you see the progression of my day. The spacing signifies a space of time before the next thoughts or event. It is my prayer and hope to do my best to share it with you.

Before I start I want to thank you for your prayers for Zach. I bet you didn’t know I was more anxious about Zach yesterday than I have been for most of what I have been through. A friend of mine told me she was surprised how nervous I was. Guess why. When it’s something I am going through personally, medically I kind of know what to expect. But this is my baby we are talking about. So with an incredible awareness God showed me once again what a fabulously strong woman and mother my mother is. I will not dishonor her here by calling her Diva. I am so blessed to have her as an example of what a mother should be and oh the wonderful comforting love and never failing strength. I try to imagine…thinking how much I love Zach…how much I love my mother…how much I know she loves me…the unimaginable…love God has for us. I stand in awe.

I will space here to actually start what I said is my post…….

Sunday was the start of better days. I say that because I have a strong, renewed determination to be the positive uplifting woman God believes in.
I know some of you will say, “We’ve already told you that you are.” My response to that is, “No, it’s different. It’s more.” The anticipation of what’s to come on this journey is exciting. Some people might say, “Can’t she see what she is going through? Has she lost her mind? How can she be so excited about what her future holds knowing what this syndrome has the potential to do to her?” My answer, “I am excited because God picked me to walk this journey with Him. He believed in me enough to stay prayerfully reverent to Him. So with a heart that is bursting with love, gratefulness, and humbled by the wonder of His love and belief in me. I will do my best to continue this post and share with you what is in my heart and on my mind.

This morning (Monday, remember this is from yesterday) my mind and heart are still racing with the joy of these feelings and the almost uncontainable excitement of what will happen next. I had this thought. These feelings have opened my heart and given me a better understanding and compassion for different struggles that people go through. Struggles that I might not have had the compassion I should have. There are people that won’t understand where I place my faith, belief, and hope. They might even think I have lost my mind. For those hearts I am saddened, but committed to prayer for their hearts and souls.
This strength and assurance you read in my posts and hopefully see in my eyes and smile is such a wonderful gift from God. The best medicine. When this clicks in you, you just know. You are not the same. I know that I wouldn’t be where I am right at this moment without every step.

Everyone of you, in your own special way, have had and continue to have an important part in this incredible journey. You might not realize what a boost to my heart you give me with your notes, emails, cards, and so many other things. They are priceless treasures of encouragement to me.

Starting today, take pride, yes I said pride, in the body God was given each of us. But not for the reasons some people do. We all know some of those reasons. Now don’t misunderstand me. Some of the reasons they use do require hard work and determination. Those are accomplishments. I say take pride…meaning in your appearance not for the reasons the world tells us we should. But out of reverence, respect, and humbleness for the wonderfully made bodies God has given us.
I will admit right here that I too am guilty, yes me. But in the past. I didn’t completely love this wonderful piece of art that God created…me. This is not conceit, but honor. Because He formed me. In the past I allowed the world’s views to make me confused about what the world sees as beautiful and what I know is true beauty. Because remember what I love to say….”God doesn’t make mistakes.” I don’t mean to imply that we should stop doing the things that will improve and ensure our health. I am saying starting today tell God thank you for making you exactly the way He did. To do anything other than that is to dishonor and disrespect His creation of you. You know how we work ourselves to death to prepare if we are going to have people over, “getting the house ready”? Why shouldn’t we feel the same way about getting ourselves ready everyday of our lives? Some days you won’t be at the top of your game. We all have those days. But I just wanted to share why I take the time to be so “put together” as friends, nurses, and yes even my doctors have told me. It’s for that reason and also because I am a Southern raised girl. My mother taught me to care about that. Sometimes the outside picture is all people get the chance to see in you. So why not love the artwork God gave us?

I kept Zach home from school with me today because he is having 4 teeth extracted to make room in his mouth. I am nervous, but know everything will be alright. We had talked yesterday about the music he likes. I told him I would take him to Lifeway before he went to the dentist. It was my mission to find the beat he likes with the words that will strengthen him and not pull him from God. I went with a calm of knowing that we would find it and we did. All of you with teens that like that beat and you know the beat I’m talking about, I will be glad to tell you what we bought yesterday. Zach picked it out. I got an unexpected bonus while we were there. I now have 2 more praise and worship cds and a devotional for the three of us to share together. I will tell you the funny of this particular book in another post. I want to stay focused now and not confuse you with too much rambling.

I realize now in the days and weeks before this improved Stephanie I had allowed myself to have a little “Pity Party” from time to time. That’s not in my usual character. Now that doesn’t mean that I am above it or that I don’t think it could happen again. Sometimes you do have to go through those times to get to these wonderful days. I wonder if you are seeing the beautiful sunshine today. I hope so. Isn’t it wonderful that this is all happening right before Easter?

I have already said on numerous occasions that I am amazed, blessed, and humbled by this journey. It has inspired a renewed hunger in me to honor and glorify all that He is and has done in my life. I have a renewed commitment to my daily devotions and prayers. The three of us, my boys and I, are “Tuning Up” our family. Our stronghold is God.

Back to my day with Zach. Before we even left Kingston Springs, we went to the bank. I absolutely love living in this community. This is my home. I love every part of living here. It’s nice to go through the drive thru and the girl knows your name.
Well, I am still on that natural bursting high. So “full up” I can hardly stand it. When I looked into the drive thru window I saw a friend walking up to the teller inside. I asked my teller to tell my friend, I said hi. About the time I got that out he waved because he saw me. We all laughed. As I was pulling away I looked at Zach and told him that I was so happy and excited that I just wanted to share it with everyone I possibly could. Because it would be wrong not to share it. I want to spread it as far as I can.

Diva met us at Lifeway. When we finished there we wanted to take Zach to lunch. A nice lunch somewhere he hadn’t been before. We decided on P.F. Chang’s. I have been there once a long time ago. I was surprised to hear my mother say that she hadn’t been there. We had the most wonderful lunch served to us by the sweetest, kindest girl. I happen to ask her what kind of tea they serve. I said that I really liked it. Do you know what she did? She brought me a bag of it to take home!

Once Zach ate enough to knock off the edge of his hunger, his nerves started getting the best of him. I’m very impressed by the way he handled himself though. When we first got to the restaurant I had given him and Diva special bookmarks. The one I gave Zach had the “Footprints in the Sand” story. I knew that was the one I wanted to give him. He had come home from youth one night and told me all about this wonderful story they heard about. Well, guess what story that was? I told him that had been a strength for me going through this. It made me remember at even the toughest of times the unbelievable love God has for each of us. I told him that mamas never want their children to have to go through pain and suffering. Mothers that are reading this, you can feel what I am talking about I know. So imagine how our Father feels. I can imagine Him up in heaven looking down on us, realizing that to glorify His name He has to allow us to scrape our knees and stub our toes. But I can see Him reaching out to us out of love before knowing that to go through it would better glorify His name. That’s just how I like to picture it.

On the way to the dentist I noticed that Zach was holding the bookmark in his hand. I could tell he was intently studying it, almost oblivious to anything else. We pulled into the parking lot and I saw him slide it into his pocket. When he opened the door I asked him to wait just a minute, to close it. I grabbed both of my baby’s hands and with all my heart, all the feelings and love I had inside me, spoke the most wonderful, soothing prayer. I’m not saying that to boast that I did it. I have told you so that you can see how this is just another time that God’s hand was there.
Zach was wiping his eyes as we walked in. He very quickly said that he wasn’t crying because he was scared. We all know why he was moved to tears. The love he felt from God inside our car. The same love I felt enveloping me.

Zach sailed through like a pro. Let me tell you, he is the “Man”. One of the teeth that was pulled had roots like I’ve never seen before. I think it could be on Ripley’s Believe It or Not. We were told not to be surprised if he swells and bruises pretty badly. He is doing good. Of course, I am babying him as much as I can.

Bennie and I had a wonderful talk tonight. He admitted to me he has been concerned about this “New” me. The almost nervous energy. He said that I am like a butterfly you can’t quite catch. Just as you get close enough it flitters away. He said that it was almost overwhelming to watch. Also, this is his most important fear, losing me. He said that the candle always burns brightest just before it burns out. I understand why he feels that way. I don’t have that fear. I know when the time comes I am ready. But until I have finished my work here there is no rest for the weary. His fear is the loss of the other part of him. As humans we all feel that when we lose someone close to us. So please pray for Bennie peace with this.

I am going to end this post here and with this next part. It’s very important.

If you kind of have a feeling that there is something that God is calling you to do. But you know how it is sometimes. We let our insecurities and fears rob us of an opportunity. It’s okay to be unsure and even scared. If you ask anybody you know, even that person that stands up in front of you every Sunday giving announcements and making you laugh, even he will admit that he gets nervous about doing that. That’s okay. The important thing is, don’t let it be the road block in your journey. Don’t let it make you detour from the wonderful path God has planned for you.

I have jumped down from my soap box.

Quote of the day:

“Sometimes angels fly close enough to you that you can hear the flutter of their wings”
Unknown

Verse:

Cast your cares on the Lord and he will sustain you; he will never let the righteous fall.
Psalm 55:22

Monday, March 7, 2005 5:52 PM CST

Hello my dear friends!

This is the first chance I have had to come to my computer today. I have only read 2 of the many emails you have sent to me on this beautiful day. But already I am so overwhelmed with the pure joy and love that is struggling to be contained inside of me. I haven’t even checked on how many have visited the site today or who has left me a note on my guest book. Both of these are so special to me and excite me so much.

I know you are waiting to hear what has taken me so long to make it to my computer. You are probably thinking the words have just come. But no, that is so not the case today. In fact, at one point during this what I have declared the “Best Life I Could Ever Imagine Living”, I actually had to stop and pray. I actually asked God if He could save the words for me for just a bit. By this point in the morning I had already handwritten 3 pages as fast as I could. The thoughts were so powerful to me that I was almost out of breath trying to capture every one of them. My heart was racing like a rabbit and has continued to do thatall day. Hey, maybe this is God’s plan to jar my “Sleeping Beauty” of an adrenal gland awake. Sounds good to me.

I apologize to tell you that I am not going to post the over 6 pages of notes that I have scratched out. At least not just yet. The reason is that I want to take it all in so I will be able to do it justice when I post to all of you. To me it is like having the most wonderful job ever. You know the “Dream” job. Some of us look for it, “dream” of it, sometimes without luck all of our lives. Please come join me in this wonderful place in my life that God has gifted me with. It is the most incredible natural high you can ever have. Just so you can understand even more so. I have not taken a single pain pill any of these incredible days.

Another important reason for this wait to post is that during all of this today Zach had a dentist appointment today to have 4 permanent teeth pulled (braces , you know how that goes). Anyway, so as his mama I need to focus my attention on him. I am looking forward to when I feel that it is the right time to share this next post with you. Until then keep checking the site. Who knows, it could be in the middle of the night or tomorrow. But I do promise you this, as soon as I have the best quiet time to concentrate on it I will pray that God continues to guide me and do my humanly best to glorify the One who deserves all of this glory.

Quote of the day:

Mama, the sun is shining today.
Zach Crowe

Verse:

“Finally, brothers, whatever is true, whatever is noble, whatever is right,
whatever is pure, whatever is lovely, whatever is admirable -- if anything is excellent or praiseworthy -- think about such things.”
Philippians 4:8

Monday, March 7, 2005 1:55 AM CST

(I actually started this post, the second one on Sunday, yesterday afternoon. So if you haven’t read my two previous posts stop here before you read any further. I want to be sure you don’t miss a single one of God’s blessings. After you have read those two, then come back to this one. Thank you.)

You know how sometimes when you wake up you just know? You just know that this day is going to be exceptional. Well, today has been and continues to be for me.

I woke up this morning at 5:00 because the words were spilling out of me. At first I thought I would try to make enough notes to post when I woke up. But after writing half a page I realized that I had to get to my computer. The words were just like music and medicine to my heart and soul. It doesn’t matters how many times that happens, I am still amazed and humbled that God blesses me with the words to share with you. Now every single day the words don’t flow exactly like that. But that is okay. You have to have regular days and sometimes even downright bad days to truly appreciate the exceptional ones that God blesses us with.

Okay so back to what I told Bennie (as soon as he woke up) I claimed to be “The Best Day I Have Had Since Hawaii”. This morning He has blessed me with an even more “sunshiny” belief that He will heal me. Whether it is here on this earth or when I receive my heavenly body The most important thing to remember (this is for some of the people that love me and faithfully pray for my family and me every day and sometimes ask God “Why”) like I said that most important thing to remember is that it will be in His time.

I am not the same as when I took the first step on this wonderful journey He has allowed me to be a part of. Each day, even when I was having some of the hardest of times mentally, emotionally, and physically I have known beyond a shadow of a doubt that this is exactly where God wants me to be. Every day when the words come I thank Him for loving me and giving me this outlet to share my journey with you. I will quickly tell anybody that ask me, “Do you ever wonder why you have to go through this?”, a firm and absolutely positive NO. I like to say, “God doesn’t make mistakes.” If He doesn’t answer your prayer right away just know He knows what is the best for the journey He has chosen for you. He’s the best Daddy a girl could ever dream of! My use of the word Daddy is not meant to belittle what God, my Father, is. No, rather it’s the little girl in me that uses that word out of a deep, trusting feeling of awe and wonder for the love He has for all of us.

Back to this morning. Everything about this morning just flowed like clockwork. See “The Best Day Since Hawaii”. We have started a new Beth Moore study in SS. If you know me or if you don’t, but have read past entries, you know that I have never been one to speak out in a group. But the people that are close to me have watched as God has taken that fear and encouraged me so that I can glorify Him. So guess what? I not only read multiple verses out loud (not at separate times but all together), but also, as I like to laughingly say, “talked like a maniac”. I was so excited through SS and church I was dancing on the inside. But I did control my outward appearance. I held it to a smile that was as bright as I could possibly manage and as many hugs as I could give during our morning fellowship time.
I tell you every single step of this day has been just packed with blessings. Our pastor gave us a sermon that was absolutely wonderful. I listened with rapt attention, hung on every word. The music we were blessed with just before the sermon was by one of my favorites. She sang “If You Want Me To”. This song has been such a source of strength to me through this entire journey. You might ask, “How can you be so positive? Why don’t you get mad?” Every part of me that you see, hear speak, and read in my entries is because of God’s grace and love for me. I am quick to give Him the glory for these words. Without Him I would be just another lost soul with no direction. But because I know who my Father (Daddy) is, that He loves me, and has a special plan for me, I am able to face each day and yes even each challenge that is placed before me.

I have to take a break. Because this day is not over yet and I don‘t want to miss a minute of it. I will continue this entry when I have enjoyed the rest of this day. How perfect is it that God gave me this day as my best day? Because if you know me or have read my posts, you know that Sunday is my favorite day.

I hope this is “The Best Day Since (fill in the blank to suit you)” for you.

Quote of the day:

Look for the smallest of blessings. The hidden rainbow.
Stephanie

Verse:

“Everyone who is called by my name, whom I created for my glory, whom I formed and made”
Isaiah 43:7

Well, I am back at the computer again to continue sharing “The Best Day Since Hawaii”. I’m not going to tell you every single little detail of this extraordinary day. But I will tell you that the sun has shined brightly outside for everyone. I just hope that if you were around me today or while you are reading this that you feel my “sunshine” (pure joy) that is burning brightly from my inside out. If you have read earlier posts you will remember a quote that I posted personally, “Enjoy happiness, treasure joy.” Every single blessed part of this day has been joyous and I have treasured every wonderful second. I hope you do too.

The first part of this post was started Sunday afternoon. For the second time on Sunday the words were bubbling over. Right now as I am typing this next part it is 12:17 am, early Monday morning. I was so exhausted after church last night that my bones literally ached from the emotional excitement of the day. But like always when the words come I have to share them. Sometimes, like on this night, at first it’s just a sentence, maybe two. And I think okay, but I lay there. I have learned though, that when the words are there it is important to share them right then. Before I get up, when I am still cozy in my bed, my heart will a lot of times start to race, the beginnings of the next post forming almost quicker than I can blink my eyes. When this happens I know that I have to capture the moment. You know that is a part of, “Live Like You Were Dying”, capture the moment and share it.

The next part of this post is about church Sunday night. I knew during church that morning that I would absolutely, without a doubt, be at church that night. I had to be, because I had the feeling that this night was “The Night”. I call it “The Night” because on Sunday nights our pastor usually calls on someone to share their testimony. Before I go any further I must backtrack so that you truly understand how very much this is a God thing and see how I can say that I know that I am exactly right where God intends for me to be on this journey He has given me.
The first Sunday night I went to church when we first started going to this church there was a testimony. At the time I didn’t realize what took place on Sunday nights. I just assumed that our pastor had spoken to this person and asked if they would share their testimony. You know, give them a chance to be prepared. But I want to tell you something that was said by the person that is teaching my Sunday school class right now. You shouldn’t need to prepare to pray if you are a praying person. This afternoon what he said many Sundays ago came back to me. It made me realize that you should have to be given “Time” to prepare to give your testimony. If you have a testimony you should be ready for the chance to share it.
So the next Sunday night I realized what was going on. Imagine my heart racing with the fear that I would be called on to stand in front of these people and tell my story. I didn’t actually think of it as telling my story because the sheer panic of sitting there was more than I could handle. Well, I have two precious friends, Queen and Drill Master (I won’t call you what we know Queen lovingly likes to call you), they knew about my fear. So guess what they did? Yes, they whispered to me that they had heard that the pastor was going to call on me to share my testimony that night. Let me tell you, I would have loved to have seen my face, that heart racing fear. I told them no, that I was sure he would have called to let me know ahead of time so that I could prepare. I say prepare here, not because I doubted my testimony, but because I had allowed speaking in front of a group of people to become such a huge insurmountable fear of mine. They had a good time teasing me. Let me tell you I had a little bit of sweat going on. I have to tell on myself here. I didn’t realize that Sunday night service lasted until 7:15. At my previous church it lasted until 7:00. I try to make it a point not to look at my watch during church. Because to do that I believe says that we have taken our focus off of the reason we are here and allowed things that could wait to interfere with God’s message to us. Back to telling on myself. I had already allowed my fear to be a part of the first part of this service. Then I looked at my watch. It was almost 7:00. So I closed my bible. I was ready for the closing prayer. But guess what? The pastor continued to pray. I am sorry to say that I was not very considerate. I opened my Sunday school book and started on the next weeks lesson. This is so out of character for me. But Satan had sensed my fear and I had allowed outside thoughts to interrupt God’s message. Well, you will never ever guess what happened next. Our pastor called on me to give the closing prayer. Oh my, I could feel the heat rising up my neck. A sure signs of the hives I get when I am nervous, excited, or upset about something. I don’t even remember what I said. But I do know that it was a gentle “spanking” reminding me that I had taken my focus off of what was important.

So I had to tell you that story and in doing it also tell on myself. Because there are others out there that are allowing that same fear to hold them back from what God has planned for them. That fear is a stumbling block in the journey. I don’t know about you, but I want a straight clear open path.

I told Bennie before Zach and I left for church that I hoped that I was asked to share my testimony tonight. I was so excited, felt it in my heart that I would be called. Zach had heard us talking. I didn’t think that he was really paying attention. He was in a hurry to get to church early so that he could shoot basketball before youth began. But he heard the excitement in his mama’s voice and saw the excitement I could barely contain.
On the way to church he and I discussed the music that he and a lot of teens like to listen to. When you have a teenager that can be a touchy subject. I told him my reasons for the way I felt. We pulled into the church parking lot. We were early. But Zach didn’t bring his basketball. I decided to seat in my car for a couple of minutes to compose myself, to try to calm my racing heart. This time it wasn’t racing from fear. It was the excitement and anticipation of sharing what God means to me. Zach got out of the car and walked to the church instead of the youth house. I didn’t even wonder why he did that. Little did I know that my baby was headed straight for the pastor. When the pastor saw him he asked Zach how he was. Zach replied good and asked how he was. Then with tears in my eyes now as I type this my sweet boy asked the pastor if he was going to do testimonies tonight. The pastor said that he wasn’t sure. Zach said to him if he decided to do it would he please ask me. Because I had been preparing this afternoon to share. Zach left for youth then. I didn’t see him or know what he had done until after I shared my testimony tonight.

When church started tonight we did our usual singing. With each song we sang I just felt that tonight was “The Night”. But for a moment I almost allowed doubt back in. Because after we had sung a few songs a quartet got up and sang a few songs for us. Still each of these songs spoke to me and made me feel that this was "The Night". But the doubt almost got back in. This time though, I very quickly prayed. I spoke to God and told Him that I was ready. But that if He saw in my heart that I was being boastful that I understood if He decided this would not be “The Night”. But still, I had this excitement. An excitement that made my hands shake and legs tremble. I prayed God would give me the strength to stand on those trembling legs and speak with a clear voice when my time to share did come. And it did. This was “The Night” on the day that was my “Best Day Since Hawaii” How could I ever doubt that this would be "The Night"?

When I was asked to share I walked to the front of the church. When I got there the pastor handed me the microphone. For a flash of a second I wasn’t sure I would be able to do this the justice that I believed it deserved. I said that I couldn’t speak into the microphone. But the pastor assured me I could. I began by saying I wanted to share a story or two so that they would understand my testimony better. I told them about the hives I get when I am nervous, scared, or excited. I told them I wasn’t scared or nervous about sharing my testimony. I was nervous that I wouldn’t be able to do it the justice it deserved. Then I let them in on the stories about my fear of speaking in front of a group of people. After I did that I shared with them the first part of this post minus the addition at the very top and ending with the verse above.
What better way to end the day that I had claimed as “The Best Day I Have Had Since Hawaii”.

Now that I have share this wonderful day with you I feel the calm that will help me rest. As I end this post I am amazed that I have sat here and typed 5 pages!!!!! This is possible because it is my desire to share this journey with you. Not for my glory. But for the One that deserves all the glory!

I have prayed this prayer many times today.

Father,
I am grateful, blessed, humbled, and thankful for Your never failing belief in me. Thank you for this journey. I will forever honor and glorify Your name. I love you, Lord. Thank You for always loving me.
In Jesus precious name.
Amen

Sunday, March 6, 2005 6:15 AM CST

Okay, I had planned to leave Saturday’s post on for a couple of days because it was so lengthy. But you know how it goes, when the words come it’s time to post. So here you go.

I don’t listen to the radio much. I listen to my favorite cds. But on the occasion that I do this song is being played, “Live Like You Were Dying”. Now I know that a lot of you are probably thinking…”Duh, Stephanie, it’s at the top of the charts, won a bunch of awards, and is nominated for even more. I chose to look at it as a gentle reminder of how precious all of our lives are. Don’t wait for “The News”. Go ahead and start doing the things that you say, “When the kids are grown, For our 25th (put your own # in) anniversary, or any other number of reasons we use because we let “life” get so busy. Take time to think about what you would like to do. I know some things might take a little time, prayer (Yes, God is ALWAYS in it!), and for some things, yes, you know it…financial planning. But start tackling the ones you can today…like love deeper, hug someone a little longer, smile and laugh more often (they say it’s the best medicine…but we know what or should I say Who is the best.), and enjoy sunsets. Because they are God’s artwork displayed for our enjoyment and appreciation every single day and no two are the same. Those are just a few easy ones to get you started. But sometimes even those we think we are TOO busy to do.

When I listen to the words to that song I can so relate and it makes me cry because of the depth that those feelings come from. I’ve gotten “The News”…“Nothing we can do”. But that doesn’t scare me. It does gently remind me that “Life” does not control me or own me. I have a Father who loves me and has great plans for me. So read my quote for the day, verse, leave a note on my guest book (or email me), and go get started with your list!

Quote of the day:

Today is the most important day of your life. What are you going to do with it?
Stephanie

Verse:

For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11

Last little note….It’s Sunday!!!!!!!

Saturday, March 5, 2005 5:26 AM CST

Okay, I know technically it is Saturday and I said I would post again yesterday. But yesterday ended up being a busy day and wore me out. So I figured I was awake and the words were here.

I’ll start with the surprise I posted about earlier. A couple of you are too funny. You called me to ask what it was. So for the rest of you here it is. The day I was released from the hospital (Thursday) my day nurse was checking in on me. I was waiting and waiting for her to get the orders from the doctor to be released. I happen to ask her about Gloria. You know I don’t use people’s names here out of respect for their privacy. But I just had to use her name. Gloria is the perfect name for her because she is “gloriously” filled with the Spirit and you know it the minute you meet her. Back in June of last year she was my nurse care giver when I had the exploratory surgery (that gave us the bad news) and adrenalectomy (that has kick my tail). The first few days I had an old friend of ours that was our caregiver. Oh gosh, I have to go back a few days to be able to tell you all that was going on so you will realize even more how happy and thankful I was that God brought Gloria into my life.

Okay backtracking a bit to catch you up. I had the surgeries. My surgeon came out to speak to Bennie and my mother. The news wasn’t good. He said when he got in to remove the abscess he found out that it was actually a desmoid. He was only able to remove 80% of it (with desmoids that isn’t good). Then as he explored my abdomen he found another desmoid in my mesentery. You already know about that. But to do the story justice I had to tell how we found out about it. Bennie asked him what we were going to do about this. With tears in his eyes my surgeon told them how very sorry he was. There was nothing else he could do because the mesentery is the blood supply to the small bowel. Then he asked to pray with them. See God has put me with the right group of doctors. Bennie and my parents were pretty upset or as I usually say “torn up”. They talked and talked about how to tell me the bad news. In my heart I already knew it. I remember my surgeon sitting on my bed to talk to me. He hugged me and said that he wished he could do more.

When I came out of surgery (this was before the doctor talked to me) they put me in one of the small rooms on 9 South (my favorite floor. Isn’t that sad when you have a favorite floor and know so much about a hospital?). That night Bennie had to sleep in a chair that barely reclined. Now this man has spent his share of nights sleeping on uncomfortable foldout beds and chairs. Bless his sweet heart. The next day he asked our friend that was my nurse care giver for a pillow and an extra blanket. He laughed and told her about the chair. She told him to hold on she would be back. When she came back she told Bennie to get my stuff together I was being moved. She moved me to one of the suites. I have to say that I have been blessed that any time I am in there for a major surgery I seem to be in one. But what makes this even more of a God thing is that they had changed these rooms since my last surgeries. They were now using them as a 2 patient room. So this was a God thing once again. After we got settled in Bennie said he wanted to do something for the nurses. He decided he would buy a couple of pizzas for them. So this is yet another story to get back to where I started. But I have to tell it now too to get back to Gloria.

He walked to the elevators to find out how to get the pizzas. He decided he would go to the restroom before he went down. When he got back to the elevators there was a man standing there holding a red box over his head. He looked at Bennie and asked if he would like to buy a pizza. Bennie asked how many he had. Guess what his answer was? Yes, 2! He sold the pizzas to Bennie for $5.00 a piece. Of course the nurses were thrilled. Now how can you not say that wasn’t another God thing? It’s still incredible to us how He worked this and the rest of the story out.

Our friend was going to be off the next couple of days. That meant a new care giver. Bennie happen to meet her in the hallway. He joked with her that she had big shoes to fill. And buddy did she do that and more with her glorious love for the Lord! She came straight into my room and told us that her name was Gloria and she was here to take care of me, to do the Lord’s work. She then sang to me with the most wonderful soul comforting voice. It brought tears to my eyes. I needed this for my heart. I love this woman and am so thankful once again for God’s love for me. He knew I needed Gloria to help boost my spirit after the news. From the minute you meet her you have no doubt about who her Savior is. The day I was going to be released from the hospital Bennie’s brother-in-law came to visit us. Here once again I have to say that I am very blessed to have a wonderful family (that’s everyone of you, Sister Girls, you too). Of course, anybody that knows me, knows that my boys are my heart and my mother (I call her Diva). My love name for her because in my eyes she is beautiful. She is “The Diva”. We are attached at the hip. We always laugh about that but it’s true.
Bennie had told me the day before he had a surprise for me. But as we were visiting with PT Bennie said that he didn’t think it was going to work out. Every time I am in the hospital he always works out a surprise for me (He’s a “Good Man”. Queen you know the story that comes from.) That’s a story for another day though. It’s not connected to this jumble of stories. Are you still with me? I hope I haven’t lost you in my rambling. This is just me, my thoughts and memories of this journey.
While PT was visiting with us Gloria came in. I asked her if she would sing to me again. You just know with her that she is always looking for that opportunity. Not to showcase her wonderful voice, but to share her faith and love for God. She sang two songs for me and I cried again. But anyone that knows me knows that I am moved to tears through music. It soothes my heart. We all were blessed by sweet glorious Gloria. She wrote her name, address, and phone number in the back of a puzzle book I had with me (Thank you again Infra Gang).
PT had prayer with us before he left. I was packed, ready to go home. A few minutes after he left Bennie got a phone call. Anybody that knows him knows that he is always on the phone (business). So I didn’t think anything about it. I didn’t realize it was PT calling him to let him know the surprise was on it’s way up. He told me that the surprise had worked out. There was a knock on my door and in walked our dear friend, the pastor that married us (we had gone to his church for years). He has always been such a strength to us. It had been a while since we had seen him. So imagine my surprise! He talked to us about the trip he had just gotten back from. I mean literally just rolled back into town and came straight to see me! You just have to know how wonderful this was and how God is so much a part of all of this journey. He was out of town at a conference when he got the call from Bennie. Bennie didn’t think it was going to work out. Of course, he is wishing it could have, little did he know. PT happen to go down a different way when he left my room. Because he went this different way he saw “the surprise” walking in. If he had gone the way he normally did he wouldn’t have seen him. On top of that, I mean it was down to the wire. I say that because transport (the guy with the wheelchair) came to take me down right after my surprise had arrived. The transport guy was so sweet. He waited patiently while we finished up our visit with prayer. So you see I had to tell you all of this to give the whole picture of God’s hand in every step of this.

Okay, so if you can possibly remember how this post got start…about my surprise before I was released from the hospital Thursday. When I asked my nurse about Gloria she laughed and said how much she loved her. Now here comes the surprise (this time Bennie didn’t happen to plan this one), she told me Gloria was working. She said that she would go get her. Let me tell you that was just the best. She walked in like the biggest ray of sunshine. If some of you haven’t figured it out by previous post that “sunshine” is happiness from inside out. My little way of talking about pure joy in me. It comes from even the smallest of things as you have seen.

Gloria sang to me again and hugged me. We talked for a few minutes. I asked her if I could have her address again. I had forgotten to write it in my address book. So when I finished the puzzle book (forgot it was in the back) I threw it away. So see another God thing. What were the odds of her working that day? I know I continuously say it’s a God thing and how He is in every part of this journey. I won’t apologize for that because it is so true and important to share. So walk on with me on this wonderful journey, and it is. Every day I wake up and wonder what He will do today and what prayers He will answer.
I am blessed and thankful for every day of this journey He chose me for. My prayer is to help and be an encouragement to at least one person through this. To me that would make this journey worth every step…that and the fact that He is taking every step with me.

I hope you have been able to follow this rambling post. Maybe it is like this, jumping from subject to subject, because I started this at 3:30. As I have been typing I have listened to one of my favorite cds almost 3 times! That might be another reason this post is so jumpy. Because I have headphones on so I don’t wake anybody else up.

Okay, I am going to stop here for now. Hopefully I will be able to sleep for a little while now. By the way, after all of that, I’m not even going to go into my visit to the doctor on Friday. Yes, back to Vanderbilt the day after I got out. Next post.
Good night or actually good morning…ha ha.

Quote of the day:

Approach everyday of your life with dedication, as though you were an ambassador of a better world.
Unknown (Thanks Mr. B. for sending this one to me in one of the “sunshine” cards from you and the Infra Gang)

Verse:

Know therefore that the Lord your God is God, he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands.
Deuteronomy 7:9

Before I go to bed I just realized that this post is a new record….4 pages…unbelievable! The words were definitely here.

Love, blessings, and deep thankfulness to all of you. You make the journey easier.

Friday, March 4, 2005 8:49 AM CST

**Sorry, I guess I was more tired than I realized. I thought I posted this yesterday. I will post again later this afternoon.

Hello!
I am HOME.
Thank you for all your calls, emails, notes, visits, and cards. I am strengthened everyday by your support and love. God has blessed me richly on this journey.

I will post more later. I am still pretty tired. Oh and the official word….the flu and a UTI. So, antibiotics (my favorite…ha ha) for the next 10 days.

Later I will tell you about a wonderful surprise I got today. Oh let me tell you, the sun shined brightly with this blessing.

Quote of the day:

The more we see Him, the less we will see ourselves.
Beth Moore

Verse of the day:

The Lord is my light and salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid?
Psalm 27:1

This verse made me think of one of my favorite songs, “Who Am I”.

Thank you again! It’s wonderful to be home

Monday, February 28, 2005 6:21 PM CST

I live each day with the hope and anticipation of being a bright spot, a little piece of sunshine, in someone’s day. Some days you don’t know that you have made a difference. But then there are days when you just know that you were there for that reason.
I think there are a lot of people on this earth that just don’t get that. Or maybe they just don’t care. They are so caught up in why this part of their life isn’t going right. Why this person did them wrong. Or why didn’t God answer their prayer yet.
You know I look at all of that differently. God answers my prayers everyday. He answers your prayers everyday. I am so sure of that. Because He loves us. Oh, now He might not answer them exactly the way you prayed. But sometimes when we pray, as humans we tend to put in our little twist of how we think those prayers would best be answered. So when He answers them a little differently or it takes a little longer some people react a number of ways….we can all think of those ways.
I choose to see these answers to prayer as God’s plan and love for me. Like I said, everyday, He answers prayers for me. Each day I have on this earth is a very special prized gift He has given me. But with that gift comes responsibility….His plan. You have to be open to His plan. Because as the bible tells us, He will always be with us. He won’t put us through anything that we won’t be able to handle (with His help). So we just have to be open to where the journey takes us. We all have our own journey. I’ve said this before each person‘s journey is different and unique to them. You can’t compare yours to someone else‘s. Because God has given you what He knows you can handle. So if your shoulders get weary pull out those football shoulder pads because God has great confidence in you. I often laugh and say that God must think I am a Titan.

I had lunch with a sweet friend today. Isn’t it funny how the smallest thing can mean so much? Sometimes those small things bring just the right amount of sunshine to even the cloudiest day.

Quote of the day:

When someone loves you, the way they say your name is different. You just know that your name is safe in their mouth.
Rebecca age 8 - On what love means.

Verse:

I trust in You, O Lord, I say, “You are my God.” My times are in Your hand.
Psalm 31:14-15

Please leave me a note on my guest book. It will be such a wonderful surprise for me.

Saturday, February 26, 2005 2:05 PM CST

I finally got the call at lunch time yesterday. That was after I had called his secretary (she asked me to if I hadn’t heard from him by that morning). It was a good conversation. I had a chance to discuss quite a few things that have been on my mind. Of course, there aren’t answers or solutions for everything. But just knowing we are on the same page makes a world of difference.

Hopefully my oncologist will be back in a week. I am going to schedule an appointment with him to discuss my chemo, adding Sulindac and upping my chemo dose, also the possibility of trying curcumin. In Utah they are doing clinical trials using curcumin for shrinkage in desmoid tumors.
My surgeon and GI doctors are trying to figure out why my amylase levels are so high. Last week it was 333! Normal range is 25 to 115. Five weeks ago mine was 154 and has steadily climbed every since then. My pancreas doesn’t look bad in the last scan. Guess it’s just another one of those Stephanie things. You know I just have to be unique.

Well, it’s Saturday and the sun is shining. So I am going to enjoy some time with my boys. Plus, tomorrow is Sunday, my favorite day.

Quote of the day:

We can be victorious, but only if we walk with God.
Beth Moore

Verse:

I am not alone, because the Father is with me.
John 16:32

Your notes and emails are such a boost to my spirit. They make the sun “shine” on the inside. Thank you for taking the time to spread a little sunshine

Thursday, February 24, 2005 3:51 PM CST

Hi everybody! I hope you are having a wonderful Thursday. Although the sun isn’t shining here in Nashville for us, we know that somewhere in this world people are enjoying the warmth of the sun. Those days are coming for us too. And won’t we appreciate those days when we get them? Yes. Spring is on it’s way. Promise.

Before I talk about my appointment I wanted to share some other thoughts first.

We always think we will remember things, especially special occasions or events. Some of them we do, some we don’t later down the road. The brain is only capable of holding so much. That’s before you add being put to sleep numerous times and chemo. So this journal is important for a lot of reasons. The most important reason is Zach. I say that because it is a part of our lives, what we are living, a part of his mama. It’s my gift to him and hopefully he will see not only in my everyday life but also in this journal my walk with God, my faith. That is the best gift to give. These entries are a diary of the journey and glimpses of who his mama is. Something that he will always have.

Thanks to those of you that have sent me your favorite things about Spring. Isn’t it fun to share little things like that? It makes you think about the beauty about to unfold for us…Spring and flowers and stuff.

Okay, I know, you’re waiting to hear. First, NO, I haven’t heard from the doctor I have been patiently waiting to hear from for almost 2 weeks. At this point I don’t even care to talk to him now. I have taken care of some of the issues on my own and talk to other doctors.
I saw my urologist today. He told me that my kidney looks as good as it has looked now. He will continue to monitor my CT scans when I have them. We both agreed that a stent is a absolute pain. So we will wait on that. I got a little surprise while I was there. I was waiting to see him and a nurse walked in to tell me that a doctor wanted to see me, said that he hadn’t seen me in a while. So I followed her down the hall, wondering who it could be. It was a friend of the family, who is doing his residency at Vanderbilt. He is now in Urology which is his specialty. It was really great to see him and catch up a little.

Well, I am going to close this entry here. Zach has a basketball banquet this evening. So there are things that need to be done.

Quote of the day:

Watch for the beauty in all things and your life will be filled with treasures.
Unknown

Verse:

For you are a people holy to the Lord your God. The Lord your God has chosen you out of all the people on the face of the earth to be his people, his treasured possession.
Deuteronomy 7:6

You know how to put the sunshine in my

Wednesday, February 23, 2005 5:22 PM CST

Hi. I’m back.
Actually I’ve been back for a while. I just came to the computer. I have a lot on my mind. But before I get into that I just wanted to say thank you again for your prayers, support, notes, emails and everything else. This past week has been a very hard, trying, “hanging in there” week. A little secret about me, if I seem to disappear for a day or more, it’s usually because it’s a tough time. Every so often I go through those periods. But God is ever faithful, ever loving and carries me through. It’s at these times I usually get very quiet and still. I guess maybe it’s God’s way of making me rest. Because you know I am pretty headstrong and determined to keep charging forward. The last week has been like that. You know what was such a blessing to me this last week? Some of your notes to me. Not just the ones from last week. I actually looked back at some of the earlier ones. So this is a heads up to some of you. Don’t be surprised to get an email from me about how your note boosted my spirits. You might not even remember the words you posted, that’s okay. I just want to thank you for the love and support. Without that, all the prayers and God’s grace I couldn’t take another step.

Okay, I know you all are wanting to know how today went. First of all, let me start by saying that my GI doctor is still my favorite. He is at the top of my list. I already posted about how quickly I heard back from him. A huge plus! So, I get there bright and early this morning. The joke is that I look too “put together” (as he says it) to be hurting so bad. Most people just don’t care. We both joked about that again today. I said that I had forgotten that I was suppose to show up all “ragged out”. I couldn’t do that because my mother, “The Diva”, brought me up better than that. I am a true Southern girl and you just don’t do that.
Anyway, we discussed all the things I had on my mind. Although he didn’t have the answers and /or solutions to everything, the biggest thing is that he listened and responded as best as he could. He told me that my ileum (the last part of the small bowel) is being compressed by the desmoids. Now let me stop right here and tell you what I think. In the past CT scans the reports have all said no growth. In the past reports there was no mention of the ileum, the ureter or other things that are mentioned in this last report. But all the reports say no growth. So my question that I will ask my oncologist and the radiologist is, how can there be no growth and yet now the desmoids are compressing my ileum and my ureter gets lost in one? Sounds like growth to me. The other thing is that I have been taking tamoxifen for 8 months now with as far as I can tell, no benefit. If these problems are caused as I suspect by growth than we are wasting time. So I have been doing my own research on the next course of action. I have a couple of options in mind.

And while I am still on my soap box let me just add this. Why not……
I think I have posted about the cycles I go through. Every so often I just feel like this huge “problem”. It’s during these times that I have a hard time calling the doctors because it just seems like it will never end and the doctors aren’t any help. The other night Bennie talked to me about it. He asked if a friend called me once a month or every couple of months would it bother me? I said no. He said of course you wouldn’t. He said that I am just one of many patients.
I have thought about what he said since then and this is how I feel now. Each of these doctors made a conscious decision to become a doctor. I had no choice in the cards I was dealt. I definitely did not ask to be gifted with FAP and all the wonderful bonuses that come with it. So, as I have said before, “We are all a part of the Lets Get Stephanie Better Team”. Each player has an important role. So that means I have to be over feeling like a problem patient. I am a patient with a problem….FAP.

Guess what? I’ll bet you will never guess……
I have to be back at Vanderbilt in the morning at, yes you guessed that part of it….8:00. Another bright and early morning at Vandy. Tomorrow I will see my urologist to see about the ureter issue. I should find out about the blood work they did on me today also. That’s about it for now.

Quote of the day:

Good friends are like stars. You don’t always see them, but you know they are there.
Quote given to me by “Miz” Peggy

Verse:

I sought the Lord and He answered me. He delivered me from all my fears.
Psalm 34:4
This verse is one of my many favorites and was also sent to me by a special “FBI” friend.

Okay I promised to tell you some of my favorite things about Spring……..

These are just a few……..
Daffodils, daisies, butterflies, rainbows, and the beautiful sunny days!

Tuesday, February 22, 2005 9:55 PM CST

Okay, so it’s practically bedtime. But I’m posting again. No, the doctor I was waiting for didn’t call. But I did talk to my favorite doctor’s nurse today. She is absolutely the best. I told her what my concerns were and what I thought should be done. She replied that I knew what I was talking about. Of course, my response was that it’s because I care more about getting me better than anybody else (that anybody else is directed at the medical field). I know how I feel, where the pain is, and so on. So I do my own research and try to figure things out while I wait. Anyway, she said that she would speak to him and that it would probably be tomorrow before she called me back. Well, about 45 minutes later she called to ask if I could be in his office tomorrow morning at 8:00. My answer was absolutely. So another early morning at Vanderbilt. But hopefully I will get some resolve on some of these issues.

Okay, today I have had a small case of Spring fever. Aren’t you looking forward to Spring? It’s just around the corner. So I am wondering…..what are some of the thing you love about Spring? I know some of you feel more comfortable emailing me privately. While others love to leave me notes on my guest book. Either way is just wonderful to me. After I hear from some of you I will tell you mine. If you think about it you can probably already guess some of mine.

Good-night for now. Sweet dreams!!!!!

Quote of the night:

The miracle of your existence calls for celebration every day!
Oprah

Verse:

Delight yourself in the Lord and he will give you the desires of your heart.
Psalm 37:4

****NEW HAWAII PICTURES!!!!!!

Tuesday, February 22, 2005 9:29 AM CST

Good morning.

I know it’s been a few days since I posted. I just took a few days off. I’ve been under the weather…not sick, but sick of this stuff, tired of the pain. Every so often it gets a little overwhelming even for me. It usually gets to me when I am dealing with issues that I know aren’t getting resolved. Yes, you guessed it, I am still waiting to hear from the doctor. I called his secretary yesterday afternoon to check in. Monday is his clinic day, so that’s a busy day. I told her if I hadn’t heard from him by Friday I would call her back. My mother thinks that is too long and that I am too patient. I told her it’s not patience, it’s frustration. The waiting when I know what needs to be done and should be done. I’ve gotten pretty good at figuring this out. With a little research and thought.

When I know more I will post.

The last time I posted I was on my way to a basketball game. Well, the boys didn’t bring their game. It was a nail biter the whole game, even through overtime. Final score 28-31. So now basketball is over for this season. Zach is bummed about that. He doesn’t know quite what to do with himself. He’s use to having practice everyday after school for a couple of hours. The boys got to keep their uniforms this year because the team will have new ones next season. Zach was so excited about that. He hung both his jerseys up on his wall. It looks really cool.

Last night Bennie and I went to a concert Thomas had at the Bible college in their coffee shop. You know we always jump at the chance to hear Thomas. It was really great. We got to hear some new songs he has written. Of course they were as amazing as everything else he has done. His talent is just incredible!

Well, I know this is a short post. But when I know more I will post again. Maybe it will be later today. I hope!!!!!!!!!!!

Quote of the day:

The Bread of Life is food for the soul.

Verse:

Not that we are competent in ourselves to claim anything for ourselves, but our competence comes from God.
2 Corinthians 3:5

You could put a little sunshine in my day with a note or email. It doesn’t look like the sun is going to peek out from the clouds today otherwise.

Friday, February 18, 2005 1:00 PM CST

It’s Friday and the sun is shining!!!!!!!!!! What a beautiful day!

I’m still waiting……
I called my internist this morning and left a message for her. Her nurse called back to let me know that she had spoken with my surgeon. He was going to look over my last tests and call me. She said that since I hadn’t heard from him I should call. I was trying to follow the chain of command. But when it comes down to it I usually talk to my surgeon about these things because he has a better understanding of my history than some of the others. I trust his judgment and that is important. So now I am waiting to hear from him.
Just wanted to give you all that little update. Not much of one. But I will be leaving for the school soon. The girls and boys basketball team both have games in Murfreesboro. They are excited they get to ride a charter bus again. You know that’s practically like being in the NBA…ha ha. It was funny at their game Tuesday Bennie heard some of the kids at the school the game was at say, “Man, did you see that Harpeth team getting off that bus?” The boys got tickled when Bennie told them what he had heard. Of course they did their usual boy pumped up stuff. They are a lot of fun to watch. Let me tell you they are a pretty incredible team too. Both on the court and off.
The winner (Harpeth) of today’s game plays tomorrow and goes to state. I’ll let you know how it goes. Plus, an update on “Rev. Crowe” and the pre-game prayer.

Quote of the day:

Life does not have to be perfect to be wonderful.

Verse:

The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living.
Hebrews 11:1

Thursday, February 17, 2005 11:29 AM CST

If I ever doubt you are out there reading all I have to do is not post for a couple of days and I hear from you.
To those of you that voiced your concern, I am sorry that I worried you. I am okay, just no words really. Still waiting to hear back from the doctor as to what is next in the plan.
I’ve been battling with a few issues that continue to be unresolved.

But there is more to life than just “My Life as a Science Project”. Here are some updates on Zach. I don’t think I have posted this yet. His basketball team played their first sub state game and won (48-30)! He actually got to play for about the last 3 minutes of the game. For those of you that have seen him play, you know we always get some entertainment from that. The boys were so excited because they got out of school early, had their own charter bus, got to stop for lunch on the way and so on. During this week Bennie and I have learn some more stuff about Zach. He has a nickname that the team has dubbed him with….”Rev. Crowe”. Because Zach says the prayer before their games. Of course, there is the comedian side to him. Before the last prayer I think he said that the coach told him to make it more personal. So in Zach’s prayer he prays that they have a good game, safety of travel, and so on…..the kicker….that they don’t choke like Duke and NC did.
Now that’s real personal to Zach. Duke and NC are the best to him. Anyway, that’s been our little bit of laughter for this week. On another sweet note about my baby, he has started texting me during school just to say he loves me. Now how blessed am I? More than words can say. How can the sun not be shining on the inside with that?

When I know something more I will post. I hope you have a great day. You know I could say the same about you. The guest book has been kind of slow lately.

Quotes of the day:

You may have to fight a battle more than once to win it.
Margaret Thatcher

The poor man is not he who is without a cent but he who is without a dream.
Harry Kemp

Verses:

But happy are those…
Whose hope is in the Lord their God.
Psalm 146:5

Blessed are they that have not seen, and yet have believed.
John 20:29

Tuesday, February 15, 2005 9:09 AM CST

Good morning!

I hope you all had a wonderful Valentine’s Day.
I know you have been wondering were I was. No words for quite a few days. I haven’t been feeling very well for the last few days. But today is a new day and it is suppose to be sunny and 73 degrees today. Talk about Spring fever. By the end of the day we should all have a pretty good case of it!

I talked to my internist yesterday evening. We discussed most of the things I was concerned about from my last CT scan. She had some ideas and is checking with my surgeon to see what he has to say. We are concerned about the stomach being dilated. This, I believe, means that the stomach isn‘t emptying like it should. Plus, my right ureter (the lower portion) gets lost in a soft tissue mass (desmoid). The ureter is the tube from your kidney to your bladder. The concern is that the desmoid will close off the ureter on the right side. So my internist said that she would email my surgeon to get some feedback from him. Then she will call me back to set up whatever tests are necessary.

That’s all the medical news for today so far. The tournament went well for Zach’s team last weekend. They won the district. So today they go to Murfreesboro to play their first game for the State championship. They are all excited because the coach rented a charter bus for them to take to the game. They are big stuff!

I hope you all have a great day! Enjoy the sunshine. It’s good for the heart and soul.

Quote of the day:

Your attitude determines your altitude.

Verse:

I will rejoice in the Lord, I will be joyful in God my Savior.
Habakkuk 3:18

New Hawaii pictures!!!!!

Friday, February 11, 2005 3:36 PM CST

I am home again after the study.

My feelings about it….well….let me just tell you I believe my mother had a good idea, giving up doctors for Lent. I have an addition to it….giving up all medical procedures also.
So my response to them would be, “You know I’d really like to make that appointment or have that procedure. But you’ll have to check back with me after Easter.”

Anyway, back to the study. We got there bright and early this morning (8:00). When the tech called me back he told me I wouldn’t have to drink the baking soda crystals this time. Thank goodness. That was a small answer to prayer. But there was still the wonderful barium that I just couldn’t wait to down. This test went a little different then the last one. They took a x-ray before I drank the barium, waited just a bit and took some more x-rays. After this set the tech showed the first and second ones to Bennie and me. In the second one there was a very distinct dark area that we are sure was one of the desmoids. It was a pretty good picture of it. It is definitely right there in the middle of it all. I have talked to my internist and asked her to review the x-rays and tell me what she thinks. I also called my oncologist and left a message. He had talked about adding a medicine and changing my chemo at the next visit, which will be after I have my next CT scan. My thoughts on that are, I have already been on this dose for 7 months with no known growth, but no shrinkage. So lets go ahead and make the addition and change in hopes and fervent prayer that with the next scan there will be shrinkage. I’m waiting for a call back.

From my research I have found that the normal dose of these two medications, tamoxifen and sulindac, is 120 mg and 300 mg. These medications have been used together for desmoids. For some people it works. For others it doesn’t. With desmoids it is a trial and error. Right now my tamoxifen dose is only 20 mg daily. Now don’t get me wrong, I don’t relish the idea of increasing my medicine. I would like to take just enough to do the trick with the least amount of side effects. So I guess we’ll just have to wait.

I have just received a copy of the CT scan from Tuesday. I’ve read it over twice and already have quite a few questions that I want answers to. Let me stress here, in my opinion it is important for a patient to have a copy of scans like this. First you have to have an understanding of how to read them. But ultimately it is the patient’s responsibility to stay on top of their care and treatment. Because they are their own best advocate. Plus, these doctors are just human and when you are dealing with a patient that has such a rare syndrome like I do it becomes very important to do your own research. Who knows, you might come across something that could make a difference. But more importantly, you have to be an active part of your treatment and care. So now let me jump down from my soap box.

I hope you all have a wonderful sunshine weekend. Bennie told me that it is suppose to be like 62 degrees and sunny tomorrow. I don’t know about you all, but I am ready for Spring.

Hope and Prayer for you today -

I hope and pray that you have a deep down, hold your stomach laugh and that you get an unexpected hug. Those are two things that are just good for the soul.
The sun is out and how wonderful is that? I love it.
My test is over and it’s the weekend. They can’t do anything else to me this week. Thank you, God!

Quote of the day:

No one can believe how powerful prayer is and what it can effect, except those who have learned it by experience.
Martin Luther

Verse:

Call to Me and I will answer you and tell you great and unsearchable things you do not know.
Jeremiah 33:3

What a wonderful promise.

A little bit of sunshine from you would

Wednesday, February 9, 2005 10:26 PM CST

Surprise!

I just seem to be on a roll today, huh? Bennie took me out for a couple of hours, to get away. Didn’t really do anything, just a little distraction.

I have to say I am humbled, amazed, and blessed by your incredible love. Again here I have to praise God for answered prayer and His promise to bring us through it. You know the hard times are not any fun. But if you just hang on when you get to the other side of it, it is so rewarding and uplifting. I will be the first to say that I don’t think the hardest times get easier to handle, but just “Hold On”. He is faithful and loves us. You know as children the first song we learn is “Jesus Loves Me”. It’s a song that virtually everyone knows and can sing. Unfortunately I believe that sometimes it gets sung rhetorically. Next time, drink those words in as you (we) sing it. When it comes down to it, it is just that simple…He loves us. In that we can rest our lives in His hands.

Here are words to another song I want to share with you. This is a song that has ministered to me today. What an incredible song

Here With Me by MercyMe

I long for Your embrace every single day
To meet You in this place and see You face to face
Will You show me, reveal Yourself to me
Because of Your mercy, I fall down on my knees

And I can feel Your presence here with me
Suddenly I’m lost within Your beauty
Caught up in the wonder of Your touch
Here in this moment, I surrender to Your love

You’re everywhere I go, I am not alone
You call me as Your own, to know You and be known
You are holy, and I fall down on my knees

And I can feel Your presence here with me
Suddenly I’m lost within Your beauty
Caught up in the wonder of Your touch
Here in this moment, I surrender to Your love

I surrender to Your grace
I surrender to the One who took my place

I can feel Your presence here with me
Suddenly I’m lost within Your beauty
Caught up in the wonder of Your touch
Here in this moment I surrender to Your love

What a beautiful song. This is how I am going to end tonight’s post.
Good-night.

Wednesday, February 9, 2005 4:14 PM CST

I’m back home.
Okay you’ve asked for it. Today, you got it. You might decide you would rather not have it. The straight out truth of how I’m feeling. Now, let me add it’s not that I don’t always tell the truth. I do. But my normal answer of late has been, “I’m okay. I’m hanging in there.” That still holds true…the hanging in there part. But here’s the rest of the story. Ready or not.

I’ll tell you I’m having a pouty day…a like to sit in the middle of the floor and cry day. I’m frustrated and just tired. On my way home from the doctor I was listening to “T.J. Brown” by Thomas. It made me think about being a kid. You’re in such a hurry to grow up. You can’t wait to be 10. Because it’s a double digit. Next you can’t wait to be 13. Because you’re a teenager. And on and on. For a moment I thought, what would I give to go back to being a kid. Back then I had no clue of what was ahead of me. Some days are just harder than others.
Posting this is hard for me because it’s not my nature. My faith, by no means is any less today because I am pouty. I’m just tired.

I went to my GI doctor this morning so we could go over the report of my CT scan from last night. The first thing he said to me was that I always look so put together and have a smile on my face. So it’s really hard to know that I am in so much pain. I guess I should start going to appointments all ragged out. My reason for the way I handle this is that if I take the time to get ready, then hopefully I will feel a little better. I also believe you are treated a little better. It’s all about respecting what God has given you. The smile is just a part of me. Like I’ve said before, I would like to be remember for smiling.
Back to the doctor. The scan showed mild pancreatitis. He said he thinks most of the pain I am feeling is caused by the desmoids. Also, my stomach is dilated. That is new. So he is concerned there could be a blockage. When he first came in to see me I told him that I would do whatever to get to feeling better. Well, his answer was to order my favorite study, upper GI and small bowel follow through. The study I said that I would not ever go through again. But I agreed and it is set up for Friday morning bright and early at 8:00. I am overjoyed at the chance to experience that again. He also wants me to do a liquid diet from now until Sunday. If I am handling that okay on Sunday I can try soft foods to see how I do with them. Then he wants me to call him Monday morning to tell him how I am doing.
Oh, I also got a call from my endocrinologist’s nurse yesterday afternoon. Apparently when my lab results came back in (He and my internist are in the same office) he looked at them and asked her to call me. She said that I needed to triple my hydrocortisone until the pancreatitis and ear infections are resolved. So hopefully in a few days I will feel better. I’ll just tell you the adrenal glands may be small, but when they aren’t working it’s tough.

Well, I am going to stop here for now. As I have been posting prayers have been answered. People think that the destination is so important. Heaven, our destination, is important. But the journey is more so. My journey has been and continues to be a wonderful gift from God (yes, even on days like today). I pray that my faith and journey can be an encouragement to many. I say honestly it is a gift because God believes in my faith and strength. For that how could I not be strong and praise His name?

Quote of the day:

Faith rests on the naked word of God; that word believed gives full assurance.
H.A. Ironside

Verse:

Without faith it is impossible to please God. Because anyone who comes to Him, must believe that He exists and that He rewards those who earnestly seek Him.
Hebrews 11:6

Tuesday, February 8, 2005 4:14 PM CST

Good afternoon!

I just have a minute to post. I have to pick Zach up from basketball practice. Then I have to head back to Vanderbilt. Yes, back again. I saw the doctor earlier and she ordered blood work and a CT scan. Tomorrow morning I will see my GI doctor so we can look over the films and report. So I will post more when I know. But I will tell you the doctor surprised me that I have an ear infection in both ears….again! I knew that my ears were bothering me. But goodness, another ear infection. I told her I was much too old to be having them.

Quote of the day:

It is such comfort to drop the tangles of life into God’s hands and leave them there.
Unknown

Verse:

Without God, it is utterly impossible. But with God everything is possible.
Mark 10:27

“Hayes Street” gang, I trust Him. I believe Him. I love Him. I know He has a wonderful plan for me and I know, He loves me.
Thank you for everyday. Your love and support means the world.

Monday, February 7, 2005 4:15 PM CST

ENCOURAGEMENT

I want to begin today’s post by saying thank you. I know, I can just hear some of you saying…”Why are you thanking me?”, “You don’t need to thank me.”, “You’ve already said thank you.”, and so on. But I truly believe you can’t ever say thank too many times.

My thank you today is for the many ways you encourage and strengthen me every day. The email or note that took just a minute, the phone call to say hi, that hug you gave me that lasted just a couple seconds longer, and the list goes on. I am blessed to be surrounded by so many people that love and care for me. Please know that the feelings are mutual.

This is a small thing but I am always amazed and thankful for this when it happens. You know how sometimes you think, I should send so and so a note. Sometimes we do it. Sometimes we get busy and chemo brain or not we forget. I truly believe it’s God whispering to us. Because He knows that person could use that little lift or “encouragement”. I have been blessed in the last few weeks because I listened to that whisper. I say I have been blessed because it is so wonderful when that person tells you how much that meant to them. You just never know what is going on in someone’s life and how something very small that you do can make such a difference in their lives. So listen to that little whisper and brighten someone’s day.

This is a side note. I go back to my internist tomorrow. She is going to run more blood work. Then we’ll decide from there. Two of my other doctors have said they believe I need to have another EGD to check my pancreas. They said I could possibly have a stricture. So we will see.
After I do that I have to take Zach to the oral surgeon for a consult. He has to have 4 teeth extracted. I am not looking forward to that. I wish I could do it for him.

Quote of the day:

Encouragement is the oxygen of the soul.
John Maxwell

Quote:

Who refreshes others will be refreshed.
Proverbs 11:25

Friday, February 4, 2005 11:25 AM CST

Good morning!
I’m looking out my office window at the most wonderful sight….the sunshine. Isn’t it glorious. We can truly appreciate it, especially after the gray days we have had. For this morning’s post I am going to leave you with a few of my favorite quotes and verses. Then I am going to go enjoy the sun for a while.

I know I just posted this quote yesterday. But I have thought about it a lot since I posted it. I believe it deserves another posting.

* Fear knocked at the door and Faith answered. No one was there.
Old English Proverb

* A little faith will bring your soul to heaven, but a lot of faith will bring heaven to your soul.
D.L. Moody

* Faith sees the invisible, believes the unbelievable, and receives the impossible.
Corrie ten Boom

* We can be victorious, but only if we walk with God.
Beth Moore

* Faith is the daring of the soul to go farther than it can see.
William N. Clarke

* Prayer is the peace of our spirit.
Jeremy Taylor

* Faith never knows where it is being led or it would not be faith. True faith is content to travel under sealed orders.
Oswald Chambers

Verses:

I thank my God every time I remember you.
Philippians 1:3

My grace is sufficient for you, for my power is made perfect in weakness.
2 Corinthians 12:9

He restoreth my soul.
Psalm 23:3

For with God nothing shall be impossible.
Luke 1:37

Draw near to God, and He will draw near to you.
James 4:8

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Mark 11:24

I hope that you all will have a chance to enjoy a little bit of this beautiful sunshine today.

Feel free to chime in with your favorite quotes and verses. You know how I love them.

Thursday, February 3, 2005 5:31 PM CST

Hi everyone!

I have taken it easy today. Still not feeling too good. Some of it is from yesterday, but most of it is just the desmoids and pancreatitis.
I talked to the nurse at my internist’s office. She said that the doctor wants me to do a liquid diet for a few days and then try soft foods. I will see her on Tuesday for blood work.
I also talked to my surgeon this afternoon. I don’t know why it always seems to happen like this, but they always seem to call when I am in the middle of a handful of things. So my mind is running every which way. Today I was at Kroger, doing self checkout, they were talking on the intercom, and my phone rings. Well, let me start by saying there is just too much action going on all around me. Plus, while I am trying to get my phone out of my pocket I continue to scan items so I won’t hold up the line. I know at first he probably thought I was out there. Basically he agreed that NPO for 48 hours was not the right course of action with me. He asked how I liked my new internist. I told him I liked her. But I believe she has some catching up to get to where we are. I’m not the everyday patient with a sore throat. I admitted to him that I was just a little tired of Vanderbilt, to which he said he understood. He thinks I should have the blood work and another upper scope so they can see if there is a stricture where the polyp was removed.
I also asked his opinion about changing my chemo and adding another medication. He was very supportive of that. I told him I didn’t want to rush to make the change because I am handling this chemo okay. But in the grand scheme I am looking for some shrinkage and pain relieve. So I will have to talk to my oncologist about this. I have been on tamoxifen for 7 months. So it is probably time.

Well, that is about all the words for now. Zach has another tournament game tonight. His game doesn’t start until 8:00. So I’m sure it will be after 10:00 when we get home. And all I can think about is getting some warm jammies on. But it will be a while before I can do that. You know how I talked about loving snow? Well, I’m about ready for Spring. Isn’t great how God gave us seasons because He knew we would need the change?

Quote of the day:

Fear knocked at the door and Faith answered. No one was there.
Old English Proverb

Verses:

The only thing that counts is faith expressing itself through love.
Galatians 5:6

The prayer offered in faith will make the sick person well; the Lord will raise him up.
James 5:15

I want to say thank you to those of you that have sent me quotes and verses. The quote today was sent to me by one of my “Hayes Street” buddies. Thank you for brightening my day, everyday.

Wednesday, February 2, 2005 10:48 PM CST

Well, I made it until about 5:00 this afternoon. By that time my blood sugar had dropped to 55 and my “nothing by mouth” was officially over as far as Bennie was concerned. Then it was a matter of getting my blood sugar back where it should be and recouping. For those of you that deal with blood sugar problems you know what I am talking about. It’s not fun. It makes you feel pretty yucky. It’s 10:30 and I am feeling a little better now.
So tomorrow I will try a liquid diet and see how I do. I will of course, be calling that doctor’s office to let them know about today. I like this new internist. But I don’t believe she has a total grasp on my medical history of the past 2 years. Otherwise I don’t believe she would have suggested NPO. I had reservations about it but was willing to try it. I called and spoke with one of the nurses in my surgeon’s office. She said that concerned her also and she would leave a note in his box to make him aware of this. I haven’t heard from him as of yet.
Tomorrow is another day. Hopefully a much better day than today.
My thoughts on going NPO for 48 hours are: if getting a stomach virus puts me into the hospital, then how in this world would I be able to go 48 hours with nothing by mouth? It is a good thing I knew I needed to watch my blood sugar. Otherwise it could have gotten worse. But at this point I don’t believe we have resolved anything. So I will see the doctor on Tuesday for follow up.

Quote of the day:

Keep your face to the sunshine and you cannot see the shadows.
Helen Keller

Verse:

Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18

Just in case the sun doesn’t shine outside tomorrow a note from you would sure make the “shine factor” bright for me.
Everyday I am thankful to be a part of this wonderful journey God has given me. Take joy in the journey He has given you.

Tuesday, February 1, 2005 11:08 PM CST

I’m home.
We ended up spending the entire afternoon at Vanderbilt. My doctor ran all kind of labs and had x-rays taken of my abdomen. There isn’t an obstruction, which I didn’t think there was anyway. But there is concern that my small intestines may be in some shock because of all the stuff that has been done lately. This can happen after surgery. What it means is that basically they act kind of sleepy….hmmmm…I seem to have a couple of sleepy organs at this time. While we were waiting for all the lab work to come back the doctor talked about a number of possible things we could try. She looked at the x-rays and got some of the lab results before she decided what we should do. I am still struggling with pancreatitis. It seems that my pancreas has just been traumatized by all this. What the doctor said is true…they are sensitive little organs. Apparently, mine is no different. So guess what? As of the morning I can‘t have anything, yes, I said ANYTHING, by mouth for the next 2 days, yes that’s right 48 hours. I can have just enough water to swallow my medication and that is it. After the 2 days I can start a clear liquid diet for the next 2 days. If I do okay with that then I can move on to a bland soft diet. If I have trouble with any of these steps I have to move back for a couple of days. I go back to the doctor next Tuesday for follow up. If I am still having trouble she will order another CT to see how the tumors, pancreas, and gallbladder look. Also my GI doctor said that if things aren’t better he will do another upper scope to check it out. Of course some of you are concerned about the no eating and drinking for a couple of days for several reasons; dehydrating, weight issues, blood sugar, medication and so on. But I believe this is the best thing to do right now. It won’t be too hard, the not eating part. Because I really don’t have an appetite and since I’m not allowed to eat for 2 days it relieves me of that chore. Not being able to drink might be a tough one. I am willing to do this to feel better. I have been struggling since the ampullectomy and the study they did on me didn’t help matters. I told the doctor that my insides feel bruised and raw. By doing this, actually resting the entire digestive tract, hopefully it will give my pancreas a chance to calm down and ease everything else also. Today I was to the point that if she had told me she needed to admit me I would have said fine. If that is what it would take to make me feel better. So, say a prayer that this will help.

Bennie went with me today. He was the sweetest. He cleared his day and came home to surprise me. I know he was concerned that my small intestines could be shutting down. He talked to me about a conversation he had with my surgeon about what to look for. He said that I had all but one that he mentioned. So he wanted to go with me to the doctor today. That ended up being a good thing since it took most of the day. I was glad for the company and also the extra set of ears.

The house is quiet now. My boys are both asleep. Hopefully I will be in just a bit. I look forward to the night when I will fall asleep and not wake up till morning. I mean like 6:00 not 1:00 or 2:00 in the morning. I hope you all are sleeping peacefully right now.

Quote of the night:

No one can believe how powerful prayer is and what it can effect, except those who have learned it by experience.
Martin Luther

Verse:

We do not know what we ought to pray for, but the Spirit Himself intercedes for us with groans that words cannot express.
Romans 8:26

You can send a little sunshine my way with a note on my guest book or an email to me.
Thanks so much!

Tuesday, February 1, 2005 11:07 AM CST

This is just a short post to let you know I am on my way to Vanderbilt. Hopefully the doctor or doctors can help me. I’ll post as soon as I can. Don’t be worried. Everything will be okay. One thing just touches another and it’s sometimes a vicious circle.

Quote of the day:

Be someone’s sunshine today.
Me

Verse:

Be strong and take heart, all you who hope in the Lord.
Psalm 31:24

Monday, January 31, 2005 8:54 AM CST

Good morning!

Okay, so I am back on my roll of posting every day. I just realized I hadn’t finished my Hawaii trip. I still have the last day. Of course, if you remember, I had posted that the last couple of days whenever the boys would say something about going home I would fake a out and say I wasn’t ready to go home yet. But you know God has a way of working even that out. Before it is even time to be at the airport we are more than ready to be back home. So this is the last day…..

12-24-04 Friday Mele Kalikimaka Eve!

Well, it’s noon. We are packed and checked out of the hotel. We have a hospitality room reserved for 7:00 tonight to get cleaned up and changed for our trip home. We are going to spend the day at the pool and beach…just hang out. It’s kind of overcast here today. The sun peeks out every so often. Of course, it was shining brightly before we made it out. I don’t care for this beach, Waikiki, as much. I miss our beach, Sugar Beach, in Maui. It was beautiful.

Last night we went to the Ala Moana Mall. It is the largest mall in Hawaii. It has 4 levels. We ate supper at Bubba Gump’s. It was very good. Then we looked and shopped. We had fun just looking around. One level was nothing but designer; everything from Burberry to Gucci and Prada. Then as with all malls they had Gap, Old Navy, American Eagle, A&F, and so on.

Back to the last day. It’s 1:30 pm Last night and today the “monsters” in my body are acting up. While we were in Maui, for the most part, they were easy to handle. But today feels like they are trying to make up for lost time. I had to scoop out a place in the sand to lay where my abdomen will be. Otherwise to lay right down the sand is too hard for my abdomen. I have started noticing that any pressure on the area makes me feel very sick. With a towel over this the boys don’t even know a thing.

It eventually starts to sprinkle while we are out on the beach. Zach wants Bennie to throw the football with him. This has been one of their things while we have been here. So there is a park right beside the beach. I sit under a tree covered with a beach towel and take pictures of them throwing the ball. When it starts to drizzle a little more I tell them I’ve had enough. So we go look in the shops around the hotel, get some lunch and then relax in the front lobby. You’ve got to know this lobby is huge and open. People are everywhere. Today is a busy day. People are coming in by the droves. I told Bennie when we first got here I would see people with their luggage checking out and think…how sad their vacation is over. Now, we are those people to someone else.

We are so tired of being as I joked…Homeless in the Hotel. So, I put on my sweetest smile and go to talk to the lady about our hospitality room. After talking to her and telling her a little bit about my situation she says that she will give us the room an hour earlier and we can have it for a couple of hours. That way we can rest for a bit. Thank you, thank you.

9:40 pm
We are at the airport in Honolulu All checked in and waiting for our flight. We have heard from some of you that you are having bad weather in TN. We’ve been warned not to be surprised if we get delayed on the way. Our taxi driver to the airport was the nicest Vietnamese man. We told him about the weather at home. He told us that he hadn’t ever touched snow. Isn’t that something?
Today has been a long day! And the trip is just beginning…..

2:30 Nashville time (not sure what time zone we are flying through.)
We survived our 4 hour lay over in San Francisco. It’s Christmas day. We got breakfast (We landed there at 6:15 am), looked at the shops, and then dozed in the chairs. We are SO tired - not from vacation - from the wait before we left Honolulu, traveling since, and all the lay overs. We are ready to be home…even me. Zach wasn’t feeling well earlier. I gave him some medicine and he seems better now.
Bennie and I got to see the Grand Canyon as we flew over and all the snow in Utah. That was an added bonus.
Zach has been my seat buddy again. For the first part of the flight he slept. Now we are listening to our cds. He, I’m sure, is listening to some rap. His fav. I’m listening to Luther Vandross Christmas. Because after all it is Christmas. Zach & I have cut up until we are crying we have laughed so hard. I’m sure some people around us have laughed at our goofiness. This flight seems like it is lasting forever. We still have an hour and 45 minutes. They showed “Shark Tail” as our movie. I watched some of it and looked at a magazine. It has been fun looking out the window at the changing scenery of the country.

We landed in Atlanta for another 3 hour lay over. We haven’t had anything to eat since breakfast. It is now 6:00. The airport actually has a Chillis. So we eat there. Then we just sit and wait. Guess what? We haven’t had a single delay getting home. Once we get on this plane it’s just one more hour before we will be on Nashville ground again.

Boy, what a difference a day makes….we left Honolulu on Christmas Eve…perfect shorts weather…arrived in Nashville on Christmas night……absolutely freezing…brrrrrrrrr.
But we are so happy to be home. We missed you all.
Mele Kalikimaka …. Merry Christmas

Hawaii was wonderful. Everything you have ever heard about how beautiful it is is true. Such beauty everywhere you look. I am so thankful that we got to go. It was a wonderful time for the three of us. Thank you for letting me share it with you.
I am going to change the pictures on the site also.

Quote of the day:
(Also a prayer for all of you from me)

May the most you wish for be the least you get. May your home always be too small to hold all of your friends.

Verses:

The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace.
Numbers 6:24-26

On this cloudy, cold day a note or email from you would sure make the sun “shine” inside.

Sunday, January 30, 2005 4:35 PM CST

Hi.

It’s Sunday and I did make it to church. Unfortunately not to ss though and I was so sad about that. Some mornings are harder on me than others. I call those mornings “Slow Mornings”. So, you’ll know what I mean if I say I am having a slow morning. Sundays are so important to me, such a lift and comfort.

You know how I love to talk about answered prayer. This should bring a smile to all of your faces. I was talking to my “Sister” about being out of my comfort zone because I stepped out on a limb and wore my hair curly to church this morning. I know, I know, some of you are thinking what? Or laughing already. But I did it. I have always had stick straight hair….that is until Hawaii…or at least that is when I discovered this “new” hair. My sister and I were laughing about the whole thing. Then I stopped and said that it was answer to prayer. I laughed a little and added that as a little girl I wished I had curly hair like my mother’s. Because that would make me more like her and I thought (and still do) she was beautiful. Well, that just goes to show you that prayers are answered…not in our time…in our Father’s time. So, I look at my new hair as a special gift, a little girl’s prayer answered. So, never stop praying. He hears and answers…in His perfect time. Even a little girl’s prayer of curly hair to be more like her mother.

I hope you are all having a wonderful Sunday. I had another bonus at church today. A bunch of our church family from our old church came to CRBC today. That was so wonderful to have them there, the best of both. Another answer.

Please continue to remember my friend’s family in prayer.

Thank you for continuing to lift me and my family up in prayer also. I am in prayer about the possibility of going to Huntsman Cancer Institute for another opinion. They are on the forefront of research and clinical trials for FAP and desmoid tumors. In a lot of ways I believe Vanderbilt has done about all they can for me. But I am, as I said, in prayer for God’s direction in this. So please join me in this prayer.

I remain forever grateful for you all! Thank you for blessing my life everyday!

Quote of the day:

Faith makes all things possible.
Love makes all things easy.
Hope makes all things work.
Unknown

Verse:

I will always have hope; I will praise you more and more, Lord.
Psalm 71:14

Saturday, January 29, 2005 4:37 PM CST

I know, a couple more quiet days. Not all quiet days are bad. I have prayed, thought, and waited for the words. I continue to be thankful and amazed every day of my life in the ways God answers prayer. From the smallest of prayers He is there, just waiting for us to simply ask. Yes, today is a nasty, cold, rainy day. But there are always good things to be found in those kind of days. This morning I got to go watch Zach’s basketball team play in their first game of a tournament they are a part of. I have enjoyed watching these boys as a team. They have a true talent and love for the game. After that Zach went home with one of his friends for the afternoon. So, Bennie and I have just hung out and enjoyed being together. So, no the sun isn’t out outside, but it is shining brightly on the inside.

In the past few days I have been doing a lot of thinking about my group of doctors. I am considering doing my follow up care of my pouch with my doctor that is leaving Vanderbilt. He is the one that also does my EGD, upper scope. So, I could have both done at the same time. I really do like him. So, I will definitely go to Franklin for the EGD and most likely my flex seig.

As I have posted this week, it has been a tough week for me. Each day is a bit of a challenge. But I’m hanging in there. Since the test last Monday I have really had to watch even down to what I eat and as always I never can drink enough. Some things that I have always like to eat are now things that I either cannot eat, eat and suffer the consequences, and so on. So, that is another reason why I say eating is like homework for me.

But enough about all of that. I want to share some (not all) words of a song that I have been listening to this morning. I love this song. I have listened to the words over and over again. I hope the next time you hear it on the radio you will listen to the whole song. It is wonderful.

Who Am I by Casting Crowns

Who am I that the Lord of all the Earth would care to know my name?
Would care to feel my hurt?
…….
…….
Not because of who I am.
But because of what You’ve done.
Not because of what I’ve done.
But because of who You are.

I am a flower quickly fading here today and gone tomorrow.
A wave tossed in the ocean.
A vapor in the wind.
Still You hear me when I am calling
Lord, You catch me when I’m falling
And You told me who I am…..
I am Yours.
……
……

We are His! Isn’t that the best there is in this world? Everything else is a bonus and just look at all the wonderful bonuses He gives us!
Thank You Father! I am blessed far more than I deserve and I am forever thankful.

Go hug your loved ones. You know people can’t ever get too many hugs or smiles. Remember we are suppose to be still “Paying It Forward”.

Please say an extra prayer for one of my best, sweetest friend’s mother. She is having a tough time. We all know how very special our mothers are to us. SO please lift her and her family up in your prayers. Thank you so much.

Quote of the day:

A smile is a curve that sets things straight.
Unknown

Verse:

A happy heart makes the face cheerful.
Proverbs 15:13

You could make the sun shine even brighter by

Thursday, January 27, 2005 0:17 AM CST

I know I have been quiet for a few days. But as you all know there is always a reason when this happens. This will explain just a little. I have decided that I won’t ever agree again to having the test that I had on Monday. I have struggled and almost ended up in the hospital because of it. Things are getting better now, thankfully.

That is really all I have right now. I hope to have a longer post later in the morning. Hopefully all of you are sleeping right now.

Quote of the day:

No difficulties in your case can baffle Him…If you will only put yourselves absolutely into His hands and let Him have His own way with you.
H.W. Smith

Verse:

My soul finds rest in God alone; my salvation comes from Him.
Psalm 62:1

Both the quote and verse give me so much peace. How wonderful.

I sure would love to get some notes from you. It would put a bounce in my step and a smile on my face.

Monday, January 24, 2005 2:52 PM CST

My quote for Saturday was, Put your trust and faith in God. He will give you peace. I have peace because my trust and faith has always been in God and His plan for me. It hasn’t ever been a question of weak faith, just a sometimes weak body. But I guess that is God’s way of shaking me to remind me I’m trying to carry it myself again, which I do from time to time. Everyday for me is a learning experience going through all of this. Some you have said that you are amazed by my medical knowledge and strength to endure. But believe me you would be the same way if you were in my place. It is important to have an understanding of all of this to be able to get the best treatment. I am doing a lot of praying, researching, and thinking on how I want (yes, I said how I want…remember I said that things were going to change with the new year.) my treatment and life to be. The other day my oncologist started to talk to me about adding a medication possibly at the next visit. Well, this is a medicine I have already taken. I had no benefit when I took it last…actually gained about 15 pounds because of it. But I will say that ended up being a good thing later because I lost so much with the first surgeries. Back to the medicine though. As soon as he mentioned it I politely cut him off and said that I would not take it. I told him my experience with it. He then agreed that the dose I would need to take was actually the dose that causes heart failure. Not a good thing. He mentioned another medicine that has been used in conjunction with my chemo for desmoids. I told him I had some knowledge of it. I agreed to talk to him about it more in 3 months when I have my next CT scan. I let him know I would be doing research on it between now and then and that I would let him know if I would take it. If I feel it is a good thing. Because when it comes down to it, it is my decision. It is my body and my life. That is even more so on my mind after a morning like today. I had to be at my “second home” this morning at 8:00. Of course, I was getting my best sleep the 30 minutes right before the alarm went off. Plus, the house was so cold this morning. Not a good thing for a gal that seems to stay cold all the time now. I get myself up and going, out the door, to meet my sweetheart of a friend, SS, who wants to go with me to make sure I am okay. She happened to call me the other day after my CT scan and caught me at a not so good time. It was the first time I ever felt strange after one. It took me about 45 minutes to feel like myself again. Anyway, she was a sweetie and took time out of her day to go with me. How blessed am I? More than I deserve and I thank Him everyday. Back to today though. Gosh at this rate this post is going to get long. I know for some of you that’s quite alright. But I don’t want to put you to sleep. We get there, hospital parking, go to hospital radiology, and try to get checked in. The lady tells us to go to the clinic radiology. So off we go. I’m not going to bore you with all the little details. I am already prepared to drink some nasty stuff, already have my M.O.M. for later When I get back there they give me a cup of crystals and a cup of water. I am suppose to drink both, which taste like horrible alka seltzer. But I’m not allowed to burp. As soon as I drink it, it makes you want to do just that. And boy is it nasty. Then they hand me a container of the stuff I knew was coming. But they had a surprise for me. I couldn’t just drink it down. I had to get a mouthful and hold it to the back of my mouth before they would tell me to swallow. I had to do this about 6 or 7 times, almost gagging every time. Then I had to roll side to side and on my stomach to let it mix up. It felt like a bowling ball in my stomach. I got to watch the screen and see what the doctor saw. I really like it when doctors allow the patient to do that. Because it is up to them to do that. But it is our right to be able to do that. You know it’s not over yet. The best is coming. They let me sit back up to drink a whole container of this wonderful morning cocktail. I shocked them all pretty good though because I downed it in a blink of an eye and the cup of water I was offered. They couldn’t believe it. I just told them I had a lot of experience with the nasty stuff they like to make me drink for different test and I had learned it was best to drink it without stopping as fast as you can. Otherwise, the gag factor gets the best of you. So, then he did more x-rays and did some pushing on my full, sore belly. He ended up telling me exactly what I already knew he would. No obstruction, didn’t think I had one. Contrast went through okay, knew it would. Can’t tell if the small bowel is positioned like the other doctor suspects it is with the possibility of it adhering to the mesh. My response was I just wonder what other test the doctor would want to do on me. This doctor’s answer was the one word that I have heard over and over again…watch (wait and watch, favorite words). You know sometimes I know that is the best thing to do. But sometimes it can be the hardest thing to do. Sometimes it’s nice to be able to know you can get closure on some things. Now I will wait to hear from the doctor that ordered this.

But that is enough on the doctor stuff for the day. I have other things on my mind, believe it or not. This was kind of funny to me. The other day someone saw me looking and writing in my bible. A lot of times when I leave the house I grab my bible with my purse. Never know when you might need that extra boost. Anyway, this friend acted (jokingly) appalled that I was writing and highlighting in my bible. If you see my bible you will see post it notes sticking out of it, highlighted verses throughout, notes written in the margins and so on. I just looked at her and said that it’s my book. I don’t have to return it. Also that it’s my hope to eventually have highlighted the entire book. Because I highlight these verses that touch me and mean so much to me. I look at my bible as my treasure and something I will leave for Zach. I want Zach to know what I thought about certain verses and why they meant so much to me. It’s like another journal, just like this is too. Just another part of me.

I hope you all are having a marvelous Monday. Zach is feeling much better today. Saturday night and Sunday morning were rough. He’s at school today and looking forward to his game tonight.
****NEW HAWAII PICTURES!!!!!! Check them out.

Quote:

Those who are God’s without reserve are, in every sense, content.
Hannah Whitall Smith

Anything God ask us to do he supplies us with the energy and grace to do.
Unknown

Verses:

Let us hold unswervingly to the hope we profess, for he who promised is faithful.
Hebrews 10:23

Now faith is being sure of what we hope for and certain of what we do not see.
Hebrews 11:1

Saturday, January 22, 2005 8:38 PM CST

I am so very thankful for all of your emails and notes on my guest book. That minute you spend is so appreciated every single day, but most especially on the tough, hanging on days, like today. Yes, today has been a very bad day. I think it is a combination of things together. Most of all it has been a very full week with tests, procedures, and appointments with doctors. Bennie has been a gem today taking care of me. I’m still having a struggle. But it is a touch easier tonight. This is very hard for me to even try to put to words because it is so not in my nature. If I try to put how this feels into words I feel like I am the biggest complainer and I don’t like that. So it’s hard. I have so many issues that we are dealing with. But I think the adrenal insufficiency is the toughest. You know we all take those little glands for granted. I say we because I did too. But every day of my life….every minute sometimes, I am so aware of lacking that gland function now.
I am going to stop here for now. No more words. Just a very tough day. Please say an extra prayer.

Quote of the day:

Put your trust and faith in God. He will give you peace.

Verses:

Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you.
2 Thessalonians 3:16

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us - whatever we ask - we know that we have what we asked of him.
1 John 5:14-15

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.”
Lamentations 3:22-24

These verses have given me the peace He promises. I hope they do the same for you. Please know that my faith and belief isn’t having a tough day, just my body. But tomorrow is a new day and it is Sunday….my favorite day! So see it’s better already.

I sure would like some notes from some of you. One minute for a big bright smile….what a deal.
I hope you all enjoy your Sunday as much as I am going to enjoy mine!!!!!!

Friday, January 21, 2005 4:13 PM CST

Hey!

I am back. They moved my procedure up from noon to 9:00. So by lunchtime I was done. This one took all of 15 minutes. The funny thing is that the stent was gone. I never saw it though. So my next EGD will be in 6 months, unless anything changes between now and then.

The report is in from my CT scan. It reads that the tumors are all stable, no growth, no shrinkage. I also have numerous gallstones which wasn’t a surprise.

I don’t really have anymore words just now. I’m still pretty tired from the anesthesia. Bennie had his laughs today at me. When they do these procedures they give you Versed, an amnesia drug, so you won’t remember anything. It takes a bit for it to get out of your system. This time I kept asking Bennie how long the procedure took. He decided to test my memory by asking where I would like to eat each time I asked how long it took. Each time I would tell him I didn’t care. The place he mentioned I would say was fine with me. I never remembered and I still can’t remember talking to him about it. That’s funny.
Let me just tell you, the doctor talked to me a few minutes before he injected the medication. I am such a light weight that just about the second it hits my veins I am gone. I barely finished my sentence.

When the words come I’ll post more. I hope you all have a fabulous weekend!

Quotes of the day:

Encouragement is the oxygen of the soul.
John Maxwell

In friendship, God opens your eyes to the glories of Himself.
Joni Eareckson Tada

Verses:

Delight yourself in the Lord and he will give you the desires of your heart.
Psalm 37:4

The Lord will fulfill his purpose for me; your love, O Lord, endures forever-do not abandon the works of your hands.
Psalm 138:8

The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.
Zephaniah 3:17

My prayer for today:

Dear Lord, let my friendships honor You. Keep me mindful that I am Your servant in every aspect of my life. Let me be a worthy servant, Lord, and a worthy friend. And, may the love of Jesus shine in me and through me today and forever. - Amen

Thank you everyone!

Oh, I want to share something with you that a sweet friend sent to me. Thank you for sending it to me. I hope you all look at it. It is beautiful.

http://www.ramahinternational.org/fathers-love-letter-look-inside.htm

Wednesday, January 19, 2005 4:25 PM CST

First of all, let me start this post by saying a huge “THANK YOU” to all of you.
Your notes, emails, calls, visits, and so on are such a lift to me every day. But even more so on the days that seem to be a little tougher, like today.
I got back home and read your notes and you know that perked me up. You say that I am strong and I thank you for that huge compliment. I do have struggles I deal with. I don’t ever doubt God’s love or plan for me. But on days like today I can’t really even put words to the way I feel. I’ll try. I like each of my doctors. I believe they are giving me the best care they are capable of in dealing with what I have. It would be nice if it were a cut and dry, this is what we need to do. This will take care of it all. That isn’t the case. So I leave this all in God’s hands. I can live like this. It’s not fun, if I am real honest about it. But you know, this is my journey and I will smile as I take it. Because I know God doesn’t give us more than we can bear.

I have a keen sense of what’s going on inside my abdomen. For the most part I knew the answers I would get today. I know you are all waiting to hear. I don’t have the official report in my hands yet. The doctor didn’t have it while I was there. But we talked about what he saw on the films. The tumors all appear to be the same. Sorry no party yet. It looks like my small bowel has looped around the front of one of the tumors. This could be the cause of some of my new pain and problems. He is concerned that it will adhere to the mesh in my abdomen. Not a good thing. So, I have to go on Monday for a small bowel barium follow through. Sounds like lots of fun, right? More delicious stuff to drink and early in the morning (8:00). Just how I love to start the day.
I also have stones in my gallbladder. They have already told me that I will have to have my gallbladder removed. My oncologist said that he was surprised it hadn’t already been removed. But he said at this point it isn’t inflamed and that for now he would wait on that. He told me if I had to have surgery for something else then they should remove it at that time. I told him at this rate my list of organs to donate was getting shorter and shorter. We both laughed.

So I am back home, drinking, drinking, drinking to flush the contrast out of my system. Oh, on my way home I had to stop to buy some Milk of Magnesia. Now that’s something I haven’t ever bought before. Doctor told me to take 2 tablespoons after study on Monday. He said that it will be very important to relieve myself of the barium afterwards. Apparently if you do not the barium will ball up and turn to concrete. His words. If that doesn’t do the trick I have to drink a bottle of Magnesium Citrate. Now that is some nasty stuff. It makes me feel sick just thinking about it. Yuck!

When I know more I will let you know. If there is anything more to know.

Quote of the day:

Don’t be overwhelmed…take it one day and one prayer at a time.
Stormie Omartian

Verse:

Rejoice always! Pray constantly. Give thanks in everything, for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18

Thank you!

Wednesday, January 19, 2005 7:53 AM CST

Good morning!

I have finished my first “delicious “ drink of the morning. Only one more to go. Then it will be off to Vanderbilt, my second home. I will post more later today, probably late afternoon. I’ll have more to post then. I just wanted to say a quick “Hi” this morning. I hope you all have a wonderful day.

Quotes of the morning:

It’s not about how long you live, but how you live.

Even God’s smallest plan is bigger than any dream we will ever have.

Verse:

However, I consider my life worth nothing to me; if only I may finish the race and complete the task the Lord Jesus has given me - the task of testifying to the gospel of God’s grace.
Acts 20:24

Monday, January 17, 2005 10:39 PM CST

I bet you had given up on me posting today. It’s been a busy, tiring day. Good news from my ENT. My ears are looking better. He gave me a couple prescriptions I have to use to help with my Eustachian tube dysfunction. So that’s good news.

Today I had a lot of “Glimpses and Blessings”. When I go for my doctors’ appointments at the clinic I usually don’t see a lot of children. For one the Children’s hospital is very separate from the clinic and two the type of doctors I generally see don’t see children. But today in the waiting area for my ENT there were so many children. Quite a few of them had things to deal with.
There was a little boy, about 2 years old, I’m guessing. He was wearing glasses with pretty thick lenses. He was cute as a button. But this is something he cannot hide.
As I was walking into the clinic, I noticed a man and woman with two children. The man and woman looked like grandparents. The little boys were probably 3 and 4. The younger one was in one of the special stroller wheelchairs with the head rest. The other little boy was walking just ahead of his grandparents. He stopped, turned around, and I saw him fully. His little face was so disfigured. But he was just a little boy full of questions for his grandpa. His face is something he definitely cannot hide.
As I rounded the corner I saw a little girl that could have been his twin. I have to admit I haven’t ever seen anyone before with faces disfigured quite like this. It made my heart ache for them.
After I checked in with the front desk I had a sit to wait my turn. Of course, being in this clinic you see all types of things. I was sitting beside a young man that had recently had surgery on his cheek, jaw, and neck. I am sure he had some type of cancerous growth because of the defect (as the surgeons call it) left. He was very disfigured and unable to speak. He couldn’t hide this.
As I sat there I observed all of these people and prayed. I started by telling God how very thankful I am that I can walk down the street and no one would know anything was wrong with me. I have to tell you this right here. Because sometimes those “Glimpses” come to remind us of our blessings. In the last week I had been having a tough time dealing with the defects I have been left with from the surgery on my neck. I’m very fortunate in that my hair covers it. But sometimes I’ll just tell you some of this is just tough. You would think that the scar on my leg, which in the summer is always out in the open, would bother me more. But to tell you the truth I forget about it being there. Oh, there are some times when that left leg will let me know things are different now. Most of the time though I don’t even think about it.
So back to my prayer. I thanked God for the health of Zach and how precious he is in mine and Bennie’s life.
Then I thought about our ss lesson from yesterday. We studied about God making everything beautiful in its time. Think about that. He makes everything beautiful in its time. Not our time. Because He knows just the right moment. While we were studying this it gave me the most wonderful calm. This I have carried with me. I know I will be okay. God has his plan for all of this. So I thanked Him for my “Glimpses and Blessings”.
I also prayed for these people and their families. I prayed for strength, encouragement, and comfort. Their journey is very visible. Thank you God for their witness to me, even though they were unaware of it.

Quote of the day:

Beauty is in the eye of the beholder.

Verse:

He has made everything beautiful in its time….
Ecclesiastes 3:11

Good-night.

Sunday, January 16, 2005 6:55 PM CST

Hi. If you live in the Nashville area you have seen some snow flurries today. Boy has it been COLD!!!!! If you know me, you know what I have to say about it being cold. “If it’s going to be cold, it might as well snow.” I’m just a kid at heart. Maybe some of it has to do with growing up in Mississippi. It didn’t snow very often while I was growing up. You know when the ground is first cover with snow before any footprints, snowmen, snowball fights or so on have taken place. You know when the trees have snow on the branches. It’s just such a pretty, peaceful, clean sight.

Well, I’ve already posted about the best GI doctor in Nashville. It will be a huge loss for Vanderbilt when he leaves. He told me he will be in Franklin when it is time for my next EGD/ERCP. He told me he wasn’t sure if I would want to see him in Franklin or stay at Vanderbilt. My quick answer to him was, “I will change locations but absolutely NOT doctors.” Driving to Franklin isn’t a big deal. But now that my ampulla has developed these nasty polyps and he has taken care of it I feel it is important to stay with him. I also told Bennie today if this area becomes a big problem I have decided I will go to Salt Lake City, Utah for treatment. I have found a doctor there who is the best in the country for this part of my syndrome. I hope it won’t be necessary. But it is a relief to know the next step I would take. It kind of puts me ahead of the game. Helps me to feel more in charge of my care.

This week will be another Vandy week. I can’t remember if I already posted this. I probably did….oh well. Monday - ENT dr., Wednesday - CT scan & oncologist, and Friday - out patient…again. This is a follow up procedure from my surgery a week ago. He has to remove the stent from my pancreas. Ouch! It hasn’t been my friend.

Below I have pasted a story a friend sent me. I wanted to share it with all of you. These things I share with you are because they touch me. Hopefully they will do the same for you.

I am forever thankful for my church family; the love, support, and comfort they give me and my family. I enjoyed being back with them this morning. I have said this before, “Going to church doesn’t make you a Christian. But the fellowship of your church family can lift and strengthen your spirit.” Thank you CRBC.

Quote of the day:

Faith is not merely you holding on to God - it is God holding on to you.
E. Stanley Jones

Please read this quote more than once and think about is meaning.

Verse of the day:

Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

It's the beginning of the year (kind of), sometime we all need a little
reminder of the important things.

The Mayonnaise Jar and 2 cups of coffee!

When things in your life seem almost too much to handle, when 24 hours in a
day are not enough, remember the mayonnaise jar and the 2 cups of coffee...

A professor stood before his philosophy class and had some items in front of
him. When the class began, wordlessly, he picked up a very
large and empty mayonnaise jar and proceeded to fill it with golf balls. He
then asked the students if the jar was full. They agreed that it was.
The professor then picked up a box of pebbles and poured them into the jar.
He shook the jar lightly. The pebbles rolled into the open
areas between the golf balls. He then asked the students again if the jar
was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of
course, the sand filled up everything else. He asked once
more if the jar was full. The students responded with a unanimous "yes."

The professor then produced two cups of coffee from under the table and
poured the entire contents into the jar, effectively filling the
empty space between the sand. The students laughed.

"Now," said the professor, as the laughter subsided, " I want you to
recognize that this jar represents your life.

The golf balls are the important things-your God, family, your children,
your health, your friends, and your favorite passions --
things that if everything else was lost and only they remained, your life
would still be full.

The pebbles are the other things that matter like your job, your house, and
your car.

The sand is everything else -- the small stuff.

If you put the sand into the jar first," he continued, "there is no room for
the pebbles or the golf balls. The same goes for life. If
you spend all your time and energy on the small stuff, you will never have
room for the things that are important to you.

Pay attention to the things that are critical to your happiness. Play with
your children. Take time to get medical checkups. Take
your partner out to dinner. Play another 18. There will always be time to
clean the house and fix the disposal. "Take care of the golf balls first

the things that really matter. Set your priorities. The rest is just
sand."

One of the students raised her hand and inquired what the coffee
represented. The professor smiled. "I'm glad you asked. It just goes
to show you that no matter how full your life may seem, there's always room
for a couple of cups of coffee with a friend."

Please share this with someone you care about. I JUST DID.

Sunday, January 16, 2005 6:55 PM CST

Hi.
If you live in the Nashville area you have seen some snow flurries today. Boy has it been COLD!!!!! If you know me, you know what I have to say about it being cold. “If it’s going to be cold, it might as well snow.” I’m just a kid at heart. Maybe some of it has to do with growing up in Mississippi. It didn’t snow very often while I was growing up. You know when the ground is first cover with snow before any footprints, snowmen, snowball fights or so on have taken place. You know when the trees have snow on the branches. It’s just such a pretty, peaceful, clean sight.

Well, I’ve already posted about the best GI doctor in Nashville. It will be a huge loss for Vanderbilt when he leaves. He told me he will be in Franklin when it is time for my next EGD/ERCP. He told me he wasn’t sure if I would want to see him in Franklin or stay at Vanderbilt. My quick answer to him was, “I will change locations but absolutely NOT doctors.” Driving to Franklin isn’t a big deal. But now that my ampulla has developed these nasty polyps and he has taken care of it I feel it is important to stay with him. I also told Bennie today if this area becomes a big problem I have decided I will go to Salt Lake City, Utah for treatment. I have found a doctor there who is the best in the country for this part of my syndrome. I hope it won’t be necessary. But it is a relief to know the next step I would take. It kind of puts me ahead of the game. Helps me to feel more in charge of my care.

This week will be another Vandy week. I can’t remember if I already posted this. I probably did….oh well. Monday - ENT dr., Wednesday - CT scan & oncologist, and Friday - out patient…again. This is a follow up procedure from my surgery a week ago. He has to remove the stent from my pancreas. Ouch! It hasn’t been my friend.

Below I have pasted a story a friend sent me. I wanted to share it with all of you. These things I share with you are because they touch me. Hopefully they will do the same for you.

I am forever thankful for my church family; the love, support, and comfort they give me and my family. I enjoyed being back with them this morning. I have said this before, “Going to church doesn’t make you a Christian. But the fellowship of your church family can lift and strengthen your spirit.” Thank you CRBC.

Quote of the day:

Faith is not merely you holding on to God - it is God holding on to you.
E. Stanley Jones

Please read this quote more than once and think about is meaning.

Verse of the day:

Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

It's the beginning of the year (kind of), sometime we all need a little
reminder of the important things.

The Mayonnaise Jar and 2 cups of coffee!

When things in your life seem almost too much to handle, when 24 hours in a
day are not enough, remember the mayonnaise jar and the 2 cups of coffee...

A professor stood before his philosophy class and had some items in front of
him. When the class began, wordlessly, he picked up a very
large and empty mayonnaise jar and proceeded to fill it with golf balls. He
then asked the students if the jar was full. They agreed that it was.
The professor then picked up a box of pebbles and poured them into the jar.
He shook the jar lightly. The pebbles rolled into the open
areas between the golf balls. He then asked the students again if the jar
was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of
course, the sand filled up everything else. He asked once
more if the jar was full. The students responded with a unanimous "yes."

The professor then produced two cups of coffee from under the table and
poured the entire contents into the jar, effectively filling the
empty space between the sand. The students laughed.

"Now," said the professor, as the laughter subsided, " I want you to
recognize that this jar represents your life.

The golf balls are the important things-your God, family, your children,
your health, your friends, and your favorite passions --
things that if everything else was lost and only they remained, your life
would still be full.

The pebbles are the other things that matter like your job, your house, and
your car.

The sand is everything else -- the small stuff.

If you put the sand into the jar first," he continued, "there is no room for
the pebbles or the golf balls. The same goes for life. If
you spend all your time and energy on the small stuff, you will never have
room for the things that are important to you.

Pay attention to the things that are critical to your happiness. Play with
your children. Take time to get medical checkups. Take
your partner out to dinner. Play another 18. There will always be time to
clean the house and fix the disposal. "Take care of the golf balls first

the things that really matter. Set your priorities. The rest is just
sand."

One of the students raised her hand and inquired what the coffee
represented. The professor smiled. "I'm glad you asked. It just goes
to show you that no matter how full your life may seem, there's always room
for a couple of cups of coffee with a friend."

Please share this with someone you care about. I JUST DID.

Feel free to leave me a note on my guest book.

Saturday, January 15, 2005 11:35 AM CST

Good Saturday morning to all of you!

Let me start off by saying that if any of you need a great GI doctor give me a call. I will give you the name of the one on my team. He is fantastic and I’ll share a little of that with you today.

You know I have joked about telling this doctor he doesn’t need to tell patients that an ampullectomy doesn’t hurt until he’s had one. I’ve been trying to deal with it all week. For the last couple of days I went back to a liquid diet to rest my system and hopefully get some relief. No relief came. Of course going to a liquid diet worries everyone around me because I have worked hard to get to the weight I am. Eating is more like homework for me. I know some of you find that amusing or hard to believe. If I wasn’t going through this I would probably be right there with you. I have been happy about the couple of pounds I put on in Hawaii…those are gone now.
Anyway, I called and talked to the nurse. She called me back after she spoke with my doctor. She said I had to go in to have labs drawn. So, I picked Zach up from school (it was that time) and we headed for Vandy. I think I could put my car on automatic pilot and get there. Of course, Zach was not happy about this. So I told him I wasn’t excited about it either. Not the top of my list of things I would like to do on a Friday afternoon. Go to a movie…yes. Go shopping…yes. Hang with my friends…yes. Go to Vandy to be stuck another time this week…NO. But you know what? I got my “Big Girl Panties On” and I’m “Dealing With It”.
There always seems to be a story from all of these excursions. I told Zach that all I had to do was run in, pick up the lab order, have the blood drawn, and then we would be done. So after that maybe we could meet Bennie for a movie. Something to look forward to. So he was deciding what movie he wanted to see.
It can’t ever be quite that simple. Where would the story be if it was? Here’s what happened. We went to the GI clinic to pick up my order. After a wait the guy up front gets the nurse. She said that she was glad to get to meet me and gave me the order. We walked to the lab. The lady there loves her job (not really). She asked for my name and date of birth. I answered her. Then she handed the sheet back to me and told me I had to take it back to be stamped. So we walked back to the GI clinic to get that done. The lady at this desk asked me were the other sheet was. I told her I wasn’t given two sheets. She finally stamped my order. We go back to the lab. The lab lady asked me my name and DOB again. I answerd her. She handed me my sheet again and said that I had to go back. The other lady had stamped the wrong patient information on mine. Back to the GI clinic again. As we were walking back to the clinic for the third time Zach was saying how he couldn’t believe this. I thought to myself, this is important how I handle this. I am setting an example for my son. I laughed and told him that three times were a charm. The whole time on the inside all I wanted was to get this over and have some answers. I was just tired and hurting. When we got back to the GI front desk the third time this lady looked up at me like what do you want. So I made a joke of it and said that I wasn’t _ _ _ _ _ the name on my order. That made her smile. I’m sure she gets her fair share of people that would handle it a different way. I didn’t want to set that kind of example for my son. But I would have actually handle it this same way without him there. Because to handle it any other way does not accomplish anything. When I got my new order we walked back to the lab where this lady asked me for the third time my name and DOB. Now that they had the correct order I was called back very quick. I asked Zach if he wanted to come back as support. You know I didn’t really need that. But my point was to get him to be a part of this. To see that it wasn’t so bad. That I am okay. He joked with me and the guy that was going to draw my blood. When it came to the actual stick he turned away. The guy kidded him and said that he couldn’t call that support. Zach laughed. You know God’s hand was in this. Because this guy really talked to Zach. This was very good. Zach wants nothing to do with anything associated with the doctors or hospital. He doesn’t like to talk to me on the phone when I am in the hospital. I think he likes to distance himself from that. It makes it not so real. So that is another reason why I took him with me this time.
Oh, I forgot to mention I asked the lady at the GI clinic when they would have my lab results. She said on Monday. To her this was a good answer, a quick turn around. To someone living with pain that meant going through the weekend with no answers. So when I was at the lab I asked the tech when the doctor would have my results. He said that evening. I said to him that meant it would be Monday before I heard from my doctor. He just chuckled.
Well, guess what? My doctor called me this morning at about 8:00 am to talk to me about the results. He said that I do have pancreatitis. He said that we could handle it in one of two ways. I could be hospitalized for a few days. They would put me on an iv and administer pain medication. This would allow my system to rest and recover. Or I could try to ride it out. While he was talking I had already made my decision. But I asked him what he would recommend. He said that he knew I had had my fair share of the hospital. He said he would try to ride it out. But if it got any worse to call him and come to the hospital. That was the one I picked. I didn’t want to spend the weekend in the hospital. You know tomorrow is Sunday. One of my favorite days.
So after talking to him I have to say that maybe an ampullectomy doesn’t hurt. I guess the pain I have tried to assume was that was in fact pancreatitis. I told him I have a high tolerance for pain. I was waiting for my level of excruciating. He laughed.
So this doctor is most definitely a part of “The Team”. He’s on the top of the list.

Well, I am looking out the window and the sun is shining. What a beautiful sight and gift. I hope you all have a wonderful weekend. I will have to get back to my Hawaii journal to finish filling you in.

Quote for the day:
He who is filled with love is filled with God Himself.
St Augustine

Verse:

In everything set them an example by doing what is good.
Titus 2:7

Just wondering if you are “Paying It Forward”.
Let me hear from you either by email or on my guest book. Or a phone call would be okay also.

Oh, I have something else to add. I have decided there is something that I am very determined to get done. This is very important to me. But it will be beneficial to many. I want to get a colon cancer registry and patient advocacy program started for the state of Tennessee. There isn’t one…yet. So please be in prayer that God will bring the right people into my life and guide me to be able to accomplish my goal. I have sent letters to Katie Couric, Colon Cancer Alliance, Dateline, and our own Channel 5. I was told by a friend that is in genetics that CCA or Katie Couric could help with the funding to get this done. This is important. It is a mission. Thank you for your

Thursday, January 13, 2005 1:09 AM CST

Okay, so here are some of my first thoughts after a day like today. The very medicines that help me sustain life come with a price. There are so many things that these medications cause such as: bone mass loss/bone pain, suppressed immune system, elevated blood glucose & blood pressure, and on and on. But the thing is I can’t stop taking it until my adrenal gland wakes up. So the doctors have to monitor me and medicate where needed.

Here’s another brief lesson about adrenal insufficiency. Some of you have asked me to post this so that you could understand better.
The HPA axis (Hypothalamic-Pituitary Adrenal Axis) is known as the body’s “stress system” and ultimately controls levels of cortisol and other important stress related hormones. The HPA axis is also thought of as the body’s energy regulator and is ultimately responsible for controlling virtually all of the hormones, nervous system activity and energy expenditure in the human body, as well as regulate the immune system.
Any stress lasting longer than a few minutes results in increased levels of cortisol being released from the adrenal gland. During normal, non-stress situations, a certain level of cortisol in maintained in the bloodstream. Your highest level of cortisol should occur around 8-10 am in the morning and the lowest levels around midnight. Before my adrenalectomy my cortisol level at night was 8-10 times higher than normal. Even if pain wasn’t an issue then I could not have gotten much sleep, too much cortisol. Now the only cortisol I have is what I swallow in the morning. So, I am exhausted pretty most of the time.

So back to today. Overall no big surprises. It seems like every time I have to go in for my cortisol check it is such a big deal. The ladies at the front desk don’t have the lab orders (this is every single time I have been in) and they almost seem put out about having to get them. Today I asked if she could find out what labs my new internist I was seeing (who is in the same office) might want. Because I didn’t want to be stuck twice. You would have thought I’d asked for the moon. But I kept my smile on and eventually got it worked out…only one stick.
I know, I know you want to know if I have heard from the doctor. I have. Sleeping Beauty still. But it’s still early in the game. It’s only been 6 months since surgery. He said that it would probably take 18 months to wake up. Talk about a sleepy head. I did ask him today what chance was there it wouldn’t ever wake up. He said that it is still early. But there is a chance it won’t. He said that during any number of my surgeries my adrenal gland could have been nicked or bumped which could cause it to stop functioning. I told him I just needed to know that. I also said that I’m okay with all of this and that if my adrenal gland decides to surprise us by waking up before the 18 months then that would be a bonus. I also had blood drawn to check my thyroid and cholesterol. My thyroid was fine. My cholesterol was good. But my triglycerides were high. I don’t know how high yet. But she said that it is most likely due to the hydrocortisone I have to take. So she is going to monitor it for now.

After I finished with all of that I went by the GI Clinic to see if the nurse had talked to my doctor about my follow up appointment in 2 weeks. When I had spoken to her she said that he had only written about me having another upper scope in 6 months. Gone are the days of getting to go 2 years between scopes…oh well. Anyway when I walked up to the window guess who was standing behind the desk? None other than you know who. Yes, right there. He said something funny to me, but chemo/anesthesia brain can’t remember. So I responded by telling him he shouldn’t tell people that an ampullectomy doesn’t hurt until he has had one himself. I told him it does hurt, but not unbearably. He then asked if I was hurting now. I told him yes. He asked if it hurt when I ate. I said yes. He said that I was suffering from mild pancreatitis. He said if it got any worse to go back to a liquid diet and call him. He then told me I was right he had forgotten to write about the 2 week appointment. So his nurse should call me tomorrow. When I go in 2 weeks he will remove the stent from my pancreas. Yea!!!!!!

I know I have probably forgotten something. But if I did then I’ll post it in the morning….oh, it is the morning.

Quote:

Faith does not struggle; faith lets God do it all.
Corrie ten Boom

Verse:

Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

I will ask you to please forgive me if I use a quote or verse more than once. I don’t look at what I have already used. The ones I use because they have touched me at that time.

Thank you for your never ending prayers.

My “adopted” music family I want to say another thank for sharing your beautiful music with me. What medicine for my heart and soul. I am listening to one of the first cds that you gave us. It got misplaced for a while. I had forgotten all about it. So when I found it the other day it was like a new gift. I am so thankful God brought you all the way across the country to pursue your dream and His will. You have richly blessed our family.
I’m glad I wasn’t in the hospital long enough this time for another private concert.

Wednesday, January 12, 2005 4:09 PM CST

Hi!

I have felt your prayers surrounding me today. Thank you. I have just made it back home. I had to leave this morning at 6:45 am. So it has been a very long day. A lot of stuff to sort through and share with you. But please hold on. I need a chance to get my thoughts together and to rest for just a bit. You remember I’ve posted about my brain actually hurting sometimes when I have pushed too hard? Well, today is another one of those days. So later on after I have rested a bit I will tell you about today. Thank you for being patient.

Quote of the day:

Those who are God’s without reserve are, in every sense, content.
Hannah Whitall Smith

Verses:
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through HIM who gives me strength.
Philippians 4:12-13

Remember to “Pay It Forward”

Tuesday, January 11, 2005 12:24 AM CST

Okay, I’ve got something to say to my doctor when I see him. Until he has had an ampullectomy he has no business saying that it doesn’t hurt. I am by no means a baby when it comes to pain…have a pretty high tolerance. But it does hurt, not unbearably, but you definitely have no doubt they have messed with you once again. So you see books can’t teach you everything. That’s why they have patients…to further their learning experience.

Tomorrow is another big day. Another early morning at Vanderbilt. It is time again to check on my right “sleepy” adrenal gland. So I have to be at the lab by 7:45 am to be stuck. Then over to see my endocrinologist at 8:15. After that I see my new internist (she’s in the same office) at 9:00 for a physical. The internist I had been seeing (& loved to pieces) stopped practicing. So all my other doctors thought it would be a wise move to see someone at Vanderbilt. I agreed because I’m not your everyday case. So it’s all about “The Team”.

Next week I will have another CT scan of my abdomen/pelvis to check on the “monsters” in my belly. Bennie and I don’t talk about it too much, but the other day he mentioned that he thought they seemed more prominent. I usually do my palpitation of my abdomen in bed at night after the lights are out. That way nobody else is aware of it. But I keep in tune with what’s happening inside. Plus the fact that the tumors sometimes make sure I know they are there.

Yesterday, I learned how important it is to try to have Cts done at the same place and also to ask for detailed measurements of the tumors. Some radiologist give very short reports, which are not what I need. Also, if multiple radiologists read your films their report may be very different. Because these tumors look so much like scar tissue sometimes it is very difficult to distinguish between the two. So it is not in my best interest to be sent to different facilities and/or have different doctors read my films

I hope you all are having a wonderful (I know, it‘s rainy and stormy) Tuesday.
I have to praise Zach a little bit here. First let me tell you that he is still having a tough time with all of this. You know when you are a kid your mom is suppose to always be well, nothing can get to our mothers. But as adults we know that isn’t the truth. Anyway, he is a normal thirteen year old, dealing with all that goes with that. Along with loving and worrying about his mother. Yesterday he said that he wanted to tell me about something he had done at school. Something that he thought was a good thing. He said that he had gone to the restroom. As he was walking back to his class he walked past the custodian. He said he stopped, walked back to her and told her how much he appreciated her and what a good job she was doing. He said that her response to him was to smile and tell him to let her know if there was anything that she needed to do. He said he smiled and went to class. He said that maybe if she was having a bad day it made it a little better. I told him that even if she wasn’t having a bad day he had still brightened her day with his thoughtfulness. I also told him that a lot of times being a custodian is a thankless job. We all want to be in a clean place, but do we take time to thank the person that makes that happen? Do we make sure that we don’t make their job harder than it has to be?
So, here you go, pick someone, tell them that they have done a good job or that you appreciate them and throw in a smile with it…just an added bonus. It will only take a minute…no, not even a minute of your time. But the gift you give them will brighten their day. It’s free, but priceless. You will actually be giving yourself a little gift too. So pass it forward. Get moving. Zach was the start.

Quote of the day:

No matter what we are going through, no matter how long the waiting for answers, of one thing we may be sure. God is faithful. He keeps His promises. What He starts, He finishes…including His perfect work in us.
Gloria Gaither

Verse:

Don’t be impatient for the Lord to act! Travel steadily along his path. He will honor you…
Psalm 37:34

Here’s a little added note….
I was asked yesterday how I keep going. Well, you know my first answer….God, He is the captain of this “Team”. Plus, all of you help in this journey every single day. But on a human level I have done what I needed to do medically to help me have a better quality of life. Of course that is not always very fun. But I am a grown up and realize it is necessary.
None of us are promised tomorrow. So remember today is the day…today is a precious gift. Treasure it.

NEW PICTURES FROM HAWAII!!!!!!!

Monday, January 10, 2005 10:44 AM CST

Good morning everyone!

I want to start this morning’s post with this. I don’t know for sure, but I think the resident that saw me while I was in the hospital this time had just started her rotation in this department. So in her defense I will say that I am a very unique and difficult case. But I still stand by what I said, “…the ones that can hang on to their personality, remember that they are dealing with real people not numbers or diseases, and go through their residency with that in tact, then those are the exceptional doctors.”
I have had plenty of time and opportunity to observe the interns, residents and doctors, especially in the past two years. One time in particular stands out in my mind. I was waiting to see my oncologist. The nurse had taken me to my room and left the door open. The previous patient had left an unmentionable odor in the room. So, in hopes of airing the room out and not overwhelming me the nurse left the door open. Because of this I was also able to occupy myself during wait. I watched the different people (patients, nurses, doctors, and residents) as they passed by my doorway. Where my room was had a hallway across from it also. I watched this one particular resident. He walked passed my door once, twice. Then a third time, this time looking for a nurse. The next time I saw him he had chart in hand. He paused a couple of times this time. Then he finally arrived at the door (which was straight across from my room - and gave me a good view) of his next patient. Outside the door he paused another time before going in.
These were my thoughts about this. We all have a tendency to go to our doctors expecting them to know everything, to heal us. These men and women go to school for many years, invest a lot of time and money to earn the education to pursue their dreams. That is the only difference between them and their patients. But they are still human, they are not God. They cannot be expected to know everything and cure everything. So, as I watched this particular resident, still fresh, my heart went out to him. Because I felt his butterflies, I’ve been there…oh not walking in to see a patient and them possibly thinking I would have all the answers. But I have been there in the sense of doing my best to be successful at a job I was still learning at. I am sure that once he walked out of that room he had a sigh of relieve, another hurdle jumped. He made it. As with me, I’m sure each time becomes easier, less butterflies. Practice and that’s what doctors do - practice medicine - makes not perfect, but it makes for better doctors.

Well, that is enough about doctors and stuff. Now for some things that are near and dear to me. I would like to send out a special thank you to some people. As you have probably noticed I don’t name any of you. I keep you anonymous - give you nicknames. Some of you will know who I am writing about. But out of respect for privacy I do not name friends, nurses or doctors. Now Bennie, Zach, Becky, Josh and my parents that’s a different story.
Like I said I want to say thank you to some friends. I want you to know that all of you are so special and dear to me. God has blessed and surrounded me with so many wonderful people. I thank Him everyday for your presence in my life.
Queen, thank you for my Red Hots. Isn’t it funny how if we weren’t looking for them they would be everywhere? You know how much I love them. I am so blessed by your unbelievable strength and laughter. We just have fun, don’t we?

My two friends that gave me a special book last night, full of quotes and scriptures. You know how much I love that. I came straight home so I could read and highlight special one to use in my posts.

To one of my ski buddies, this is from your snow bunny friend, the boys loved your chili. Thanks for looking after them. You know they are always hungry.

To my wonderful “Hayes Street” gang you are the best. You continue to bright my days in so many ways. Thank you for all the special ways you minister to my heart and soul.

My “sister” you know who you are. I know you are only a phone call away. What a huge comfort. Your friendship is priceless. Hmmmmm….sounds like a MasterCard commercial…ha ha.

Walk Master and #15 you two are the best. Such incredible strength and comfort blanket me when you are around. Thank you for your example.

My mother, you know there are not adequate words that I could put together to describe the love and admiration I have for this incredible lady. She is my hero. Everything I am is due to her love and God’s grace.

My boys (I love to call them that), Bennie and Zach, they are the best of me. They are my heart. You know just to write that bring tears to my eyes. Not enough words………
Extreme, from the depths of my heart love and thankfulness that God gave me these boys to share my life with.

My church family, yes I have to add you here. Especially after being gone for a month. Let me tell you it was a true homecoming to walk through those doors last night. Thank you God for bringing these wonderful people into our lives. It was exactly what we needed as a family, our trip away. But it was time to be back where we belong.

You know I could write all day thanking people. Because I am so blessed with so many thoughtful people that make such a difference in my life. For all of you that I have thanked here and all of the many, many others I thank you from the bottom of my heart. I pray that God will bless you for sharing your kindness and love with me. Everyone of you have made a difference in my life.

Quote of the day:

We long to find someone who has been where we’ve been, who shares our fragile skies, who sees our sunsets with the same shades of blue.
Beth Moore

Verse:

I thank my God every time I remember you.
Philippians 1:3

Oh yeah, and by the way, I'm proud of myself. I added new pictures all by myself. So check out the first 3 pictures from Hawaii. Now please remember all I can do on this website is add the pictures. It doesn't allow anyone to edit or resize them. I hope you enjoy.

Saturday, January 8, 2005 5:59 PM CST

The first thing I want to post is a huge THANK YOU for all of your prayers. The surgery went smoothly. I just got home and am so glad to be here. Now for the recovery. I am praying that things continue to go smoothly. Right now it feels like someone beat me in the abdomen and back with a baseball bat. But you know it could be worse. At least my abdomen didn’t have to be cut open AGAIN. You know what I think is strange? For this surgery I had to lay on my stomach with my head turned to the right. Weird, huh?

Well, here is my account of yesterday morning for those of you that are interested. You know I had to get there an hour early so they could give me my extra boost of hydrocortisone by iv. Anytime I have surgery or even an out patient procedure I have to be given this (100 mg & on a regular day I take 20 mg). This is to cover for the stress of the procedure. A lot of times we don’t even realize the stress our bodies deal with on a daily basis. But let me just tell you, in the last 4 weeks my lack of cortisol has been very evident to me. It was funny the other day I was talking to a couple of friends and one of them was talking about how stressed she was about something and how her head hurt from it. I looked at her and could honestly tell her I understood what she was going through. I told her that a lot of times my brain actually hurts. But I am learning as I go. Those are times I have pushed too hard and should have taken extra medication. Anyway, back to surgery.

As Bennie and I were walking down the hall to get to the endoscopy lab I had something really strange happen. My gum started to bleed. I mean mouthfuls of blood. I was very calm about it. It took a bit to get the bleeding to stop. Then when the nurse was starting my iv I bled all over the sheet. So I mentioned about my gum bleeding. I thought it was strange because I just don’t bleed like that. But I figured it was due to the medicines I have to take. They did blood work on me later to check things out. I guess everything was okay.
After I saw Bennie and my mother they wheeled me across the hall to “The Room”. This doctor and I have had fun joking back and forth.

Let me stop right here and add this in…….I’ve spent a lot of time with numerous doctors. So I feel that I can voice this. One of my surgeons says that I am a connoisseur of doctors. He has told me that he trust my judgment. Because I have seen one or two that I talked to him about. I just didn’t feel they were a good match for the team. But my observation is that the majority of residents have no bedside manner or for that matter personality. I guess you can’t have that and be a resident at the same time. With that said I will say that doesn’t go for every resident, just most of them. I think the ones that can hang on to their personality, remember that they are dealing with real people not numbers or diseases, and go through their residence, then those are the exceptional doctors. That’s just my thought.

Now back to surgery….again…….
My doctor walked in and joked with me. I was sitting up on the table. He said that I couldn’t sit up for this. You know me just about as soon as they gave me the shot to relax me I was out like a light. I am a super light weight when it comes to that. The next thing I knew I was back in recovery. I don’t remember much for a while. Although I was pretty talkative…just don’t remember it. Bennie, Queen, my mother and father had a good time laughing at me. I got to keep my glasses with me so that was the first thing I asked for. Then I kept on asking them where my glasses case was. I was worried about losing them. Bennie said that I ended up asking like 10 times. That and I kept on telling them about sitting up on the table. My mother, God love her, because she loves me so much, said that was just fine because I had asked in a different way each time. I had to wait FOREVER for a room. Remember I was at Vanderbilt. You always have to wait. After that things went pretty smooth.

I got discharged this afternoon with all of my instructions. I’m glad to be home. Thank you everyone for being such wonderful prayer warriors. I could feel your love surrounding me.

I will tell you this because I feel it is important to share with you. Yesterday as we were driving to Vandy. It was a rainy yucky day. I was starring out the window. I had my favorite cd playing, to boost me up. I didn’t have my game face on just yet. Bennie told me he loved me and I just cried. I told him that I still believed in this journey but that right then I was just tired of being a “science project” of being poked at and things removed from my body. I cried for a few minutes and then prayed. I knew that I was trying to carry some of this and needed to turn it back over to the one that loves me enough to carry it for me. So, I thank you all once again for your continued prayers and love. That gives me unbelievable strength and courage. Thank you also for allowing me to share this journey with you.

Quotes of the day:

The meaning of life is to give life meaning.
Ken Hudgins

Gems may be precious, but friends are priceless.
Unknown

We must have the courage to be happy!
Henry F. Amiel

Verses:

The peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:7

May the Lord of peace Himself give you peace at all times and in every way.
2 Thessalonians 3:16

The Lord gives strength to His people; the Lord blesses His people with peace.
Psalm 29:11

I pray this for all of you my friends. You bless my life in more ways than you will ever know. Thank you.

Friday, January 7, 2005 0:59 AM CST

I decided to post again today….actually technically it is Friday. I decided to go ahead because later this morning it will get hectic around here. You know how it is…getting Zach up and going, breakfast for the boys, taking Zach to school, and oh yeah popping over to Vandy for a quick surgery.
I am praying that all goes smoothly and I get to come home Saturday. I will admit to you that I am a touch nervous. I want to follow that with my secure faith in God and His plan for me. I just don’t particularly care for all the junk like IVs and stuff like that. But I’m a big girl and yes, I will have my “Big Girl Game Face” on when I walk through the hospital doors..

I’m not going to post about Hawaii…well, I mean, I’m not going to post from my Hawaii journal this time. You’ll just have to wait to read the rest…at least until I can get back to my computer. But I do want to add this. I bought this print in a shop in Hawaii. It has a quote by Ralph Waldo Emerson. You all know how much I love quotes. Anyway, I read this in the store and had tears in my eyes. This is true. So now I will share it with you, my friends.

SUCCESS

To laugh often and much; to win the respect of intelligent people and affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends, to appreciate beauty, to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition: to know even one life has breathed easier because you have lived.
This is to have succeeded.
Ralph Waldo Emerson

Tears are in my eyes once again. When I read this I thought how wonderfully he worded my exact thoughts. I had to buy that print and now I have it here so that I can see and read it whenever I am at my computer.

Okay, I’m going to share something else with you. I was straightening my office before I started this post and found an old journal. I flipped it open to a page that Zach had actually written to me. This is what he wrote…..

Momma,
I love you 500 million purple roses and 500 billion butterflies. I love you and you are the best momma in the world!
Love, Zach

You know God just knows when we need a little lift. There was no reason other than that, that I would happen to pick that journal up and flip to that page. So I thank God for my little boost.

I want to end here by telling you all how very blessed I am to have your friendships and prayers. It is such a wonderful comfort and blessing to me and my family. Thank you from the bottom of my heart.

Quote of the day:

Courage is not the absence of fear, but rather the judgment that something else is more important than fear.
Ambrose Redmoon

Verse:

Those who know your name will trust in you, for you, Lord, have never forsaken those who seek you.
Psalm 9:10

I will ask my mother to post on my guest book to let you know how things are going…that is until I am back. Feel

Thursday, January 6, 2005 10:36 AM CST

Good morning!
I have one more day before surgery. Like always I have a million and one things I want to get done today. But I know I need to make a decision on the top five I would like to accomplish.
Bennie is feeling better today. That virus really kick his feet out from under him. My buddy, Queen, got her feet knock out yesterday. Hopefully today will be a better day for her. I am just praying that I don’t catch this. I just have to get to tomorrow without getting sick.
Last night Bennie, Zach , and I were watching a show on TLC. I (we) got another “Glimpse and Blessing”. This show was about surgeries on two different people. One was a little girl with a huge growth on her ear. The growth was three times larger than her ear. Plus it was red because of the vascular supply to this area. She wasn’t even two years old yet. The other story was about an older man that had a port wine birthmark that covered the entire right side of his head (including his face). Also he had an overgrowth of tissue and bone on that side. His face was hideously deformed from this. He had been through numerous surgeries. But the overgrowth continued. The doctors were able to debulk some of the overgrowth. But that was all they were able to do because of the nerves and massive vascular supply to this area.
The doctors were able to remove the tumor from the ear of the little girl. They created a mold from her other ear to be able to form the ear lobe where the tumor had been. They did a wonderful job creating her ear.
We were amazed at all of this. Even Zach has started saying how thankful he is when he sees something like this. I haven’t even really talked to him about what my “Glimpses and Blessings” are. But I guess he just knows. He looked at me and said, “Momma, I’m so glad that I’m healthy.” I said that I was thankful that I could walk down the street and if you didn’t know me you wouldn’t ever guess what was going on inside me. These two people had to live with deformities that couldn’t be hidden. My heart ached for the older man that had lived his entire live with this.
So I thank God that I have been blessed, yes, blessed. As I always say, the outside picture is okay. It’s just the inside that is a little messed up. It’s all a part of this wonderful journey that God has chosen for me.

Okay, now for more Maui…………..

12-21-04 Tuesday

I’m on the beach with my music and journal. Happiness & Joy!!!!!! are my thoughts and feelings right now.
This morning until about 9:30 it was overcast. But the sun is out in full force now. Another glorious Maui day. I will be back to this island paradise. I don’t know when…but someday. Next time I have made the boys promise they will do the Road to Hana, scuba dive, and surf. Yes, I did say surf. Everyone told us that they have great instructors. They said that we could do it. We’ll see about that. That is one of the things on my “List to do in my life“.
Yesterday we went on our helicopter tour of Maui and Molokai. It was so great!!!!
We have just hung out at the beach and enjoyed it. Then Bennie and I went to Safeway to pick up stuff to grill. You know while we were there we just happen to stop at Cold Stone for one of their ice creations.

12-23-04 Thursday

These are my thoughts on our last day in Maui……
The beauty, as I have said, is beyond words of description. During the two weeks we have been in Hawaii I have felt good most of the time. I had a few bumpy spots. But I think I covered these times well enough that Bennie and Zach didn’t pick up on them. I didn’t want that to be a part of our time in paradise. Zach has had a blast. We all did. He has had fun running around with his buddies. They love to hang out at the pool and hot tub, throw the football, play monopoly, and hide and seek. Yes, they loved playing hide and seek. It was funny to walk out to the beach and hear kids running around saying, “Did you find him? Where’s Zach?”
Of course, he enjoyed girl watching too. He met a girl that he likes named Maggie. She is from Washington - most of his buddies are.

It’s almost sunset and I am sitting on our lanai listening to the waves crash and looking at the beautiful scenery. I’m trying to drink in every single drop of it. Maui - until you have been here - you just cannot comprehend the beauty.

That’s all for now. So how about you leave me a note on my guest book or send me an email. You know how much that brightens my day.
Please remember to say a prayer for my family, doctors, nurses, and me. I am praying for smooth sailing through this surgery.

Quotes of the day:

The supreme happiness in life is the conviction that we are loved.
Victor Hugo

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, “I used everything you gave me.”
Erma Bombeck

Verses:

The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace.
Numbers 6:24-26

We have different gifts, according to the grace given us.
Romans 12:6

Tuesday, January 4, 2005 9:13 AM CST

HAPPY NEW YEAR!!!!!!

Can you believe it is 2005? I pray you all have a wonderful 2005. I am praying for some smooth sailing for this year.

I took a few days off from posting to recoup. The past three weeks just hit me pretty hard. The everyday stuff that you don’t even realize because your adrenal glands (both of them) are doing what they are suppose to do…helping you deal and cope with the stresses in life. Well, add the normal everyday stuff with trying to get all the Christmas shopping done and wrapped (for Josh & Becky), packing for the three of us for two weeks away from home, taking care of all the little things before we leave, then the trip, jet lag, unpacking and so on. Now don’t get me wrong, I am not in anyway complaining or ungrateful. I am just explaining why I have not posted as I normally do and like to. But I am back on track. I will be out of pocket for a few days the end of this week. I am having another surgery on Friday. I mentioned this in an earlier post. I have to have an ampullectomy. If all goes well the doctor has promised to just keep me overnight. He wouldn’t go for doing it out patient. I actually did ask him if he would/could. He laughed and then quickly said, “No, Stephanie. Don’t even think about it.” Oh well, it was worth a try.
So, I might not post for a couple of days. But I will ask my mother to sign my guest book to let you know how everything went.

Enough about all of that. I still have more from Maui to share with you.

12-20-04 Monday

Today we went on a helicopter tour of Maui & Molokai. It was breathtaking and beautiful. It left you speechless. We saw where they filmed Jurassic Park. Our pilot also showed us the leper colony. It is a peninsula of Molokai where people with leprosy where left. Back in the late 1800’s in Hawaii (prior to this there had been no disease) when ships started to come into Hawaii they brought disease, rats and other stuff. Leprosy was one of the diseases. So these people were taken on a boat and dropped at the edge of the island with nothing…left to die…exiled. Father Damien came and started a colony for these people. He built churches and they have their own little town. Later, he actually die from leprosy. This land is reserved for these people for as long as there are people with leprosy. It is the Hawaiians’ hope and dream that Father Damien be canonized so that he can become a saint.
Our pilot also showed us the Wall of Tears (waterfalls) and told us a love story about it. The shortened version of it goes like this…..
There was a spirit (don’t remember his name or the woman’s name…you know…chemo brain) from the mountaintop he saw a beautiful girl. He came down from the mountain and took the form of a man. They fell in love and wanted to get married. But he realized that if he stayed a human that the mountain would no longer get rain and the people would die. So he returned to the mountain to save the people. The girl cried and cried. Never got over her loss. The pilot said that every time you see a waterfall to know that those are her tears. How sad.

This afternoon Bennie is laying out at the pool. Zach is throwing the football on the beach with some of the buddies he has net. I am sitting on the beach, listening to Thomas (CD), and watching sailboats on the ocean. Life doesn’t get any better. This has been a wonderful, peaceful, healing time for the three of us. It has been nice to just be us. No doctor visits. Okay, okay, I did have to go to the doctor here in Maui. I had a staph infection in my right thumb and a photosensitive reaction to some sunscreen I was using. But no other doctors, no procedures, just hanging out - soaking everything up. To be here is as close as you can get to heaven on Earth. The beauty is indescribable!

Like I said, I know it will be time to go home before I am ready. I have started joking around with Bennie and Zach. Every time they say something about going home or how many days we have left, I pout and say that I don’t want to go home. I asked Bennie if he thought we could call Delta to have our tickets changed. He laughed and said that we would have to go home eventually. Now don’t get me wrong, I do miss all of you and I miss being able to post and hear from you all. But this little piece of paradise is exactly what the doctor didn’t order, but should have. I told Bennie that we have to come back…someday. The plane trip is a killer. But it is well worth it when you arrive.

We have enjoyed grilling out and eating at sunset. The sunsets here are absolutely gorgeous. God’s magnificence is right before you to drink in. If you doubt there is a God come to Hawaii. You cannot walk away not believing.

From now on when I am having a tough time I will picture these beautiful beaches - Footprints in the Sand. I have looked up and down these beaches. I’ve pictured me and God walking hand in hand. What a comfort! I will always have this in my memories and in pictures. Can you believe that I have tears running down my cheeks - sitting here in paradise? The beauty and God’s glory is all I have to say.
As I sit here I am listening to a praise and worship cd I put together. The song on right now is “Show Me Your Glory”. The perfect song for right now.

Well, that is the end for this post. Bennie is under the weather today. So, I need to check on him. Zach went back to school today. I got use to having him here with me. So I am really missing him this morning.

Take care and let me hear from you. Leave me a note on my guest book. When Bennie is feeling better I will get him to post some pictures of Hawaii.

Quote of the day:

Even God’s smallest plan is bigger than any dream we’ll ever hope for.
Unknown

Verse:

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
James 1:17

Thursday, December 30, 2004 0:03 AM CST

MAUI - 12/16/04

We are in Maui now. Like I said in the last post, words cannot do justice to the magnificent beauty here. It’s so incredible to be surrounded by the ocean & mountains. Maui is like no other place on this earth. It is just breathtaking!

I’m sitting on our lanai (balcony) watching & waiting for the sunrise. It’s about 6:45 am. The sun should be peeking out in about 20 minutes. Our condo is right on the ocean. You could practically throw a rock & hit the water. When we look straight out we can see two other islands (Lana`i & Kaho`olawe) off in the distance. To the right and left there are the most awesome mountains!

Here are a few interesting things about these two islands.
Lana`i is the island where Bill Gates got married. This island has two luxury resorts there.
The island was purchased by the Dole Company in the early 1920’s for a little over a million dollars. Dole turned the island into the largest pineapple plantation. It then became known as the Pineapple Island.

Until recently, Kaho`olawe was used by the military as a target for bombing practice. In 1994 ownership of the island was officially transferred by the US Navy to the state of Hawaii.
A little history for you.

We heard that this week the surf is the highest it has been in ten years. Some of the waves are 50 to 70 feet! We took off in the jeep to check it out. We rode through Pa`ia. This area has a lot of surfers and hippies. The surf here was breathtaking. God’s power and grace was evident.

Last night Bennie and I went to dinner alone. Zach stayed at the condo to hang out with his buddies he has met. We drove to Lahaina to have dinner at Kimo’s. We had heard it was wonderful. The drive there (17 miles) takes about 30 to 40 minutes. It was a beautiful drive. We stopped along the way at a scenic lookout to take pictures. One of the pictures we took is of the most amazingly beautiful Doorway to Heaven with Heaven above. I will have to post this picture for you to see.
We had a fabulous dinner. Bennie bought me the prettiest lei. We walked along Front Street and looked at some of the little shops. Then we headed back to the condo.

Let me tell you here that in the early morning and evening you need a jacket in Hawaii. The middle of the day is just right. The temperature ranges from 70 to 85, no humidity.

12/18/04

The three of us are enjoying the beach at the condo. This morning we went to the “Swap Meet”. It’s what we would call a flea market. They had everything you can imagine there - fruits & vegetables, books, pottery, jewelry, and on and on. We had a lot of fun.

12/19/04

Pure happiness, joy, & peace!
I am sitting on the beach (Kihei - Sugar Beach Resort) listening to the ocean and my praise & worship cd. God’s unbelievable glory and magnificence is everywhere you look. I am sure it will be time to return home before I have gotten my fill. This morning we are hanging out at the beach. This afternoon we are going whale watching. December is the start of peak season for whales. They migrate from Alaska at this time. Once they get here they have their babies and then in a few months travel back to Alaska.
Tomorrow we are going on a helicopter tour of Maui & Molokia. That should be a lot of fun. Counting today we have four more days here. Then we fly back to Honolulu for a day and a half.
See, before we know it we will be on our way home. But I have already made up my mind…I will be back.

Okay that’s all for tonight’s post. It’s almost midnight and I have some things that I need to get done before I sleep. Speaking of sleep, I am still sleeping about the same. Pieced together about 5 hours a night on a good night.
I think I mentioned that I had to go to the doctor in Maui because I had a staph infection in my thumb. Well, guess what? It’s back. Yuck. Let me tell you, it hurts!!!!! I can’t stand for anything to touch that thumb. Luckily I still have the medicines that they gave me in Hawaii. If it doesn’t clear up in a few days I guess I will have to see my doctor here.

Anyway, good-night.

I just want to say thank you to all of you that have emailed me and/or signed my guest book. Your emails and notes brighten my day.

Quote of the day:

Beauty is God’s handwriting. Welcome it in every fair face, every fair day, every fair flower.
Charles Kingsley

Verse:

God has made everything beautiful in its time.
Ecclesiastes 3:11

Tuesday, December 28, 2004 10:16 PM CST

Here’s the next installment……

We arrived on the island of Oahu (Honolulu). By the time we got checked into the hotel it was midnight. Which is 4 in the morning Nashville time. Remember we had left at 9:30 am on the 12th and now in Nashville it was the 15th. We were so ready to get here. When we checked in the guy gave us a free upgrade. He gave us a corner room with balconies on both sides. We were on the 29th floor with a beautiful ocean view! I had asked for a garden view because to have an ocean view was another $100. I was trying to be thrifty. Then look what God worked out for us. I have to tell you that the bed in our room was heavenly. The most fabulous bed I have ever slept in in a hotel.

The next day Bennie rented a convertible so we could drive around the island. We went to the Dole Pineapple Plantation. A friend of mine had already told me this (I didn’t know this before she told me) that pineapples actually grow from a brush type plant. Everybody always assumes they grow from trees. So it was cool to show that to Bennie & Zach. We had pineapple ice cream there. It was wonderful. From there we continued on…destination….The North Shore. We stopped along the way to take pictures. While we were there in Hawaii they were having some of the largest waves in 10 years. Some of these waves were 50 to 70 feet. The beaches were closed there…except of course the North Shore because they were having the “Pipeline Classic” that day. We stopped at the beach right before the Classic and right after. But at the classic it was TOO crowded to even try. These waves are just unbelievable. We stopped at this van “Giovonni’s”. It was suppose to be the best shrimp around. You go up to the window, place your order, and then wait at a picnic table. It was delicious. While we were there a cat jumped up on the bench beside us. He was the coolest thing. He would just barely tap you on the arm, no claws, to get your attention. Of course, that was all it took. We were all buddies after that. He got a belly full and we took pictures of him.

That afternoon and evening we checked out the area around the hotel. But I guess I should back up. Because I haven’t told you enough about the hotel. We stayed at the Hilton Hawaiian Village. Let me just give God the glory here once again. Everything about this trip just worked out better than imaginable. We got such a wonderful deal and then to be upgraded! Plus, this hotel was like it’s own little city. Everything you could possibly need was there. There were multiple towers with different themes for each (Diamond Head, Tapa, Rainbow, and so on). I remember those three for sure because we ended up staying in all three before the trip was over. The Rainbow Tower was the first 2 nights. The Tapa Tower was the last night. The Diamond Head Tower was when we used the Hospitality Room before flying out on the 24th. We had to check out….wait that is for a later post. Back to where I was.

The area we were in had every kind of shop and we had fun walking around. This is the day we discovered Cold Stone Creamery. Let me just tell you, I’m not a huge ice cream fan. But this has got to be about the best. It is so cool how they fix it for you. Absolutely delicious! I had never heard of them before and it’s probably a good thing there aren’t any around us. That could be dangerous. We had that and Kks quite a few times while we were in Hawaii. Lets just say it was no holds barred. Everytime I turned around Bennie was trying to feed me.
That night we collapsed in the beds. We had walked ourselves till our feet were sore.

We woke up to the most beautiful view at sunrise. We got our stuff together and headed for the airport. We were flying over to Maui. It’s just a 30 minute flight.

I have to tell you this. We saw a lady at the airport with the biggest hairdo I have ever seen in my life. Bennie took pictures. But the pictures in no way do it justice. Everyone in the airport was staring at her. Her hair was so big that she barely made it through the door at the gate. I promise you. Now that is more than just Texas big.

I am going to stop here for now on the Hawaii part. Because Maui is just too fabulous to rush through. I will tell you that on just about every postcard I wrote, “Words cannot do justice to the breathtaking beauty. God’s glory is evident everywhere you look.”

I am trying to get us unpacked and back in order here at home. That may take me a while. A week from this Friday I am scheduled for another surgery. Hopefully if everything goes good I will just be in the hospital a couple of days. No complications allowed this time. I’ve had my share and then some. Plus, I don’t have time for it because I am scheduled to speak at the Hereditary Colon Cancer conference on the 15th of this month. I found out that this is a conference just for doctors, a continuing education course. I’m excited about being a part of this.
In a couple of weeks I will go for another CT to check on the tumors. I am praying that I hear the word I am longing for…..shrinkage. Remember that will make it party time!!!! We could all use a party, right?

Well, I need to stop here for now. I have to get Zach packed. Yes, packed. He is leaving tomorrow on a youth retreat. He is going from the sunny beaches of Hawaii to the snowy mountains of Gatlinburg, opposite extremes.

Quote of the day:

Encouragement is the oxygen of the soul.
Unknown

Verse:

Your love has given me great joy and encouragement.
Philemon 1:7

Just knowing that you are praying for me and my family is so encouraging. Thank you for your commitment to prayer.

Monday, December 27, 2004 11:07 AM CST

I AM HOME!!!!!!!!!

We got back home Christmas night about 11:00 pm. Twenty-four hours after we left from Honolulu. It was a long 24 hours. But it made us (me) ready to be home. Because the last couple of days there I would look at Bennie and put on a fake pout and say like a little girl, “I don’t want to go home.” He would laugh and tell me how much he loved me.

Even though I was not allowed to take my computer to post on our trip I did take my journal and write in it just about everyday. So I will share some of that with you all. Not all at once. Just some everyday.

12-12-04 Happy 18th Anniversary to us!

9:00 am We are sitting at the gate. We should be loading soon. Bennie & I have just said that we’ve felt the first butterflies of excitement. Until this point I haven’t believed that I was going. We are listening to our cd or mp3 players. It’s funny because Zach’s phone keeps beeping with text messages from his friends. You know it’s really cool he has his phone. So he can still have that connection with his friends, even 6,000 miles away.

9:15 am
I know, you are thinking…oh my goodness at this rate it will take her the rest of her life to write about 2 weeks. But that is 9:15 Atlanta time.
We are about to land in Atlanta. I miss my friends a little already. I’m thinking about ss and church. It’s the middle of ss right now.
We just touched down on the runway…hard landing.

1:40 Our lay over is over. The plane is at the gate and it is huge. We fly from here to LAX. We are getting more excited. Zach is excited about watching a movie on this flight. Not sure what it will be. This flight is 5 hours…long flight. I did all of my preparation the doctor told me to for the long flights. I am looking awesomely cute…ha ha..that is if you could see what was underneath my pants. My doctor said that I had to wear the white hose (you know the ones they put on your legs for surgery) and take a baby aspirin for the trip there and back. He was concerned about my legs forming blood clots due to the long flight and the medications I am on. But you know they kept my legs nice and toasty. (I was thankful for those hose on the trip back)

3:30 Well, we are watching “Without A Paddle” on the plane. Zach & I are sitting together. Bennie is behind us. This is funny. When we first got on the plane Zach was looking around for the tv screen. He found the remote in his armrest. Then he said the funniest thing (but not trying to be funny. He was serious) “Dude, is this the only remote?” I’m sure he was thinking, “Score, I’m in charge of the tv.” I laughed until I had tears running down my cheeks.

Okay, so it’s 1:10 am Nashville time - 9:10 pm Hawaii time. Our estimated arrival time is 10:30 pm. Zach & I are seat partners again. We have both agreed that we are so tired of this plane. We are so ready to be there. On this flight we had a meal & a movie. The movie was “Cat Woman”. After the movie they show you flight info. So you can see where you are, how high you’re flying, what speed and so on. Then you get to watch what they call tv. We’ve seen the same episode of “Friends” twice. After that they show just a bunch of junk. Bennie has slept most of this flight. He had 2 seats to himself.

I will stop here for now with the journal part from Hawaii.

I will go ahead and tell you that throughout my writing I wrote what was just pouring from my heart. One thing that I wrote over and over again is..

“Pure happiness, joy, and peace!”

Maui is a little peace of heaven on earth. Everything that you have heard about Hawaii is absolutely true. Everywhere you look is a picture. We took lots of pictures. I will start posting, hopefully this evening.

For most of the 2 weeks I felt pretty good. I did have to go to the doctor in Maui. I got a staph infection in my thumb. It was extremely painful. Bennie laughed because I have had so many surgeries and just fly through them. But the thumb took me down.

The tumors left me alone for the first week. After that they made themselves known. But I covered so the boys didn’t realize it.

I’m glad to be back in our home. It will take me forever to get everything back in order..you know unpack, do laundry, groceries and stuff. Oh, the grocery thing. I told Bennie that I would not complain about how expensive groceries are here after grocery shopping in Maui. A loaf of bread there was $5.00. But it was pretty fabulous Hawaiian made bread. A package of salad was $5.99. The same package cost like $2.50 here. Anyway, I will post more about Hawaii later.

I hope you all had a wonderful Christmas and enjoyed lots of quality time with your families. I missed you all.

Please let me know how your Christmas was.

Quotes of the day:

The greatest miracle of all is the love of a true friend.
Unknown

Where there is great love, there are always miracles.
Willa Cather

Verses:

It is God who arms me with strength, and makes my way perfect.
Psalm 18:32

The Lord will give strength to His people; the Lord blesses His people with peace.
Psalm 29:11

Don’t forget, I love to read your notes on my guest book (or email). They really brighten my day.

Saturday, December 11, 2004 6:39 PM CST

Hey everybody!

I know, I know, you’ve been waiting patiently for me to post. I got the copies of the reports. My sinus CT was basically good. I already knew that I have a deviated septum. Although I didn’t realize I had a spur also. So the nose is okay.
The neck, abdomen and pelvis were basically the same as the last scan. Which means as far as they can tell there has been no growth. You know how I feel about this. No growth is a good thing…but I’m anxious for shrinkage. Remember, when I hear those words there is definitely going to be a party at the Crowe house! One thing that I did find out, or I should say they found out (because I already suspected it) the “abscess, cyst, fluid filled collection” (all the things they called this area on my right side) no longer has fluid in it. It’s actually another desmoid. Not a surprise.

Well, now that’s enough about doctors and medical stuff. I have to let you all know that tonight’s post will be my last one for 2 weeks. I know, shock surprise. I had planned on taking my laptop with me. But Bennie has vetoed that. We are going to spend this time together, the three of us. I hope you all will enjoy this time with your families also. I think it will be exactly what we need. I will miss posting and reading your emails and notes. But please don’t stop checking on the site. If I have a chance I will post.

My Christmas wish:

For all of you to enjoy every single moment of this time of year with your family and friends. Love each other a little more. Hug someone a little longer. Remember, enjoy happiness and treasure joy. I love you and am very thankful for you!

Thank you so much for all of your love and support!

Please, please one more thing. I know that I probably won’t get to post for the next two weeks. But I would love to come back to a ton of emails and notes on my guest book. That would just be awesome. Talk about making the sun shine! What a Christmas present! So I can’t wait. I will check my email and the guest book in the morning before I leave.

ALOHA!!!!!!!

Quotes of the day:

Those who bring sunshine to the lives of others cannot keep it from themselves.
Sir James Barrie

Faith makes all things possible.
Love makes all things easy.
Hope makes all things work.
Unknown

Verses:

Your love has given me great joy and encouragement.
Philemon 1:7

May you be blessed by the Lord, the Maker of heaven and earth.
Psalm115:15

MERRY CHRISTMAS!!!!!!!!!!!!!!

Wednesday, December 8, 2004 1:41 AM CST

Hi.

I thought I would catch you up on what happened the past couple of days with the doctors. I found out on Monday that my ears are still infected and I have suffered hearing loss. The doctor advised me to wear ear plugs to protect my ears when I am in or around loud situations; like basketball games, loud machinery, concerts and so on. He also decided to change the day of my CT scan. It was scheduled for Friday. Now it’ll be today. I will have my sinus, neck, abdomen, and pelvis scanned. Since I’m having it done this morning I am hoping to have the reports in my hands by late afternoon. I sure would love to read the word shrinkage in the reports. Wouldn’t that be great?
After I have my scans done I have to get another B-12 shot.
Yesterday I got my new machine to help with my back, shoulder, and abdominal pain. Each treatment last for 45 minutes. I have to do it at least twice a day. It’s a pretty cool machine.
I can’t think of anything else for right now. I guess I should probably try to get a few hours sleep before I have to get ready for my scans. I haven’t been to sleep yet for the night.

Quote of the day:

We can consider ourselves a Loved Person, not because of our circumstances or situations but simply because God loves us perfectly, totally, and eternally.
Marie Chapian

Verse:

“You are precious and honored in my sight, and…I love you,” says the Lord.
Isaiah 43:4

Monday, December 6, 2004 4:41 PM CST

Okay, I am going to try to put into words some of what I have been going through and learning to handle. Not sure how good a job I will do. Saying anything other than, “I’m fine.” is so hard for me. That’s such an easy quick, no strings attached answer for anybody. To me it gives the person and answer and relief. But a couple of my friends have been on me about not giving that answer. They say that it is unfair to all of you that are praying so diligently for me. So, I will try to be more open.

I will start by telling you that the past week has been extremely hard for me and on me. More so than even my family truly knows. Like Bennie always says I am a pretty good actress. A lot of times I just think to myself…if I can make it through this or get this done, then I can get back to what I have come to think of my “Safe Zone”. That’s usually my car or back home again. I’m a very determined girl and can usually (at least always in the past) go go go. But this past week, has been so different. I believe that it has been creeping up on me, but when I got these ear infections and upper respiratory infection that I just couldn’t shake it just hit harder. But that is to be expected, as I have found out with adrenal insufficiency. Like I said in yesterday’s post the past couple of days I could just feel myself shutting down. Just knew I didn’t feel right or good and that if I didn’t take care of myself and “Be still and know” I would be in big trouble. So, I am trying to take things easy and the stress level down.

Thank you guys for all pf your wonderful notes on my guest book, emails, cards and phone calls. You just don’t know how much that brightens my day. You all are the absolute best!!!!!!!
Thank you to my sweet friend that sent me the beautiful rainbows. You know how I love them. They are such a special promise to us. And so beautiful. Thank you for thinking of me.

Quote of the day:

Do not follow where the path may lead. Go instead where there is no path and leave a trail.

Verse:

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
John 14:27

Please leave me a “little bit of sunshine” on this rainy day.

Sunday, December 5, 2004 6:55 PM CST

I’m having a really down, bad day. Sundays are usually such a great day for me. So this is sad for me. I think all of this is because I’ve not been feeling well (double ear infection and upper respiratory infection I can’t seem to shake). For a normal person, and I say normal meaning with functioning adrenal glands you feel under the weather and I remember that. But this is different. I have been doing my usual research to better understand this. Since my right adrenal gland is asleep and they removed my left one, I now have surgically induced Addison’s disease. So Bennie and I have read up about it so we know the signs of a crisis. Unfortunately I have a lot of these symptoms on a daily basis. So I will have to let the doctor know tomorrow. Hopefully we can adjust my medication to help me out. I have been taking a double dose for the past 3 days but can’t tell that it has helped any. Actually, I feel as bad or worse, so it worries me just a tad. But for those of you that have been through all of this with me from the start, you know I don’t get too worried or freaked out about stuff. I mean after going through having an open wound, MRSA, Sepsis, 3 different PICC lines with TPN and on and on it’s all just stuff to me. I can rattle it off to anybody like clockwork.

Enough about that though. Here’s something happy. I got my Christmas tree tonight. We have always had a live one. Our deal is and has been since Zach was a baby is that he picks out our tree, a live one. He always picks out the biggest one that will fit in the house and that we can afford. This year, after a lot of thought, I decided to get an artificial tree. We are going to set it up in about an hour. I hope it is pretty. I bought some candles to make the house smell like we have a live tree. Anyway, I am like a big kid when it comes to all of that. So I am very excited. Also, just one more week. The countdown is on. I still can’t believe it.

Well, I am going to get some rest. Need to build up my energy for when the family gets home to decorate the tree.

Quote of the day:

Be careful how you live; you may be the only Bible some people will ever read.

Verse:

Be still, and know that I am God.
Psalm 46:10

That verse is so simple and yet means so much. Read it more than once. What a comfort. What a blessing. “Be still, and know that I am God.”

Please leave me a “little piece of sunshine” either on my guest book or email. I could sure use the boost.

Friday, December 3, 2004 4:38 PM CST

Hi everyone!

Answered prayer.
You know how strongly I believe in giving the glory, honor and praise for all prayers answered; whether they are big or small. Sometimes it’s the small answers that pull us through a tough time, just knowing God’s love and grace. I stand in awe of the love that He feels for each of us. Isn’t that a wonderful thought to carry with us?

Every day I have answers and blessings, sometimes just the smallest of thing, but each and everyone are like little treasures that keep my spirits up and the smile on my face. Some of you may not even really think about how much the note on my guest book or email will touch me, or the card you dropped in the mail, or the phone call just to say hi. But they are all treasures to me. Thank you for loving and caring so much for me and my family. I am so richly blessed.

Now on to other stuff. I want to let you all know that I have in my possession Cads from Thomas. For those of you that mentioned you would like one, just let me know. Email me. They are $5.00 each. Well, worth it.

I heard a friend of mine say today that there are only 3 weeks until Christmas! Can you believe it? I think we should continue the celebration. December 25th just gets here too fast. I love the togetherness we all share. My thoughts and love are with all of you.

Quote of the day:

Where there is peace, God is.
George Herbert

Verse:

Every good and perfect gift is from above, coming down from the Father of the heavenly lights.
James 1:17

4 today

Wednesday, December 1, 2004 4:14 PM CST

THANK YOU SO MUCH!!!!!!!!!!

I wanted to start today’s post by thanking all of you. You cannot even begin to know the strength, comfort, and encouragement you bring to my life everyday. So, thank you from the bottom of my heart. I continue to be blessed and amazed everyday by your love and kindness.

Well, I talked to the advanced biology class yesterday. Let me tell you if you had told me a year ago that I would speak to them (a bunch of teenagers) I would have said, “Yeah, sure, right.” It went well. I was still talking when the bell for lunch rang. They were very attentive (I tried to entertain them). At first I wasn’t sure how long I would talk. But between what I already knew I was going to talk about and what they asked me about the time just flew. I think they liked the bell jar full of M&Ms with the 1 Kiss in the center. I told them to imagine the M&Ms doubled (because I only had about 5,000) and the silver kiss in the center was me (1 in 10,000 people have FAP). Of course, I told them they had to grab a handful on the way to lunch. Who wouldn’t like that? Then I also asked them if they remembered being 8 years old. I told them that if I had memories from when I was 8, then they definitely had to have a couple. A few of them shared their memories, everything from learning French in 2nd grade to having a Batman birthday party. Then I told them my memory of being 8. It was the 1st time I was checked for FAP. I think I have posted about this before. If I have just realize….”chemo brain” strikes again…ha ha. I told them that I just didn’t understand why the doctor and nurse were being so ugly to me. I was a good girl. Try explaining to your child that this doctor (and it was a doctor I hadn’t seen before) was going to stick things in their bottom. Well, that’s just not even right! But that was just the first of many times. The class asked how this had affected my life. I said that until the past couple of years it hadn’t really affected it. I just knew that every 6 months I had to do my prep, get scoped, and if there were any polyps have them fulgurated. Every so often I had to have an out patient procedure so they could biopsy polyps they were concerned about. But for the most part it only took a few hours of 1 day every 6 months. Of course, years ago I had no clue of the magnitude of this syndrome. In the last couple of years I have been more affected. I will say that when I was a teenager I am thankful for the lack of knowledge. Looking back now, I wouldn’t change anything that I did for treatment. I belief that it was very important for me to be where I was when I had these surgeries.
Anyway, like I said, I talked and talked. I guess I am just getting practiced up for the Hereditary Colon Cancer conference in January. I wonder how long I have to speak then….hmmmmm…just joking.

Quote of the day:

The hero is no braver than an ordinary man - but he is brave five minutes longer.
Ralph Waldo Emerson

Verse:

Be strong in the Lord and in His mighty power.
Ephesians 6:10

Please leave me a message on my guest book.

Tuesday, November 30, 2004 0:09 AM CST

I know, I know, you were wondering where in the world I was, huh?
I wanted to leave the verses and quotes from Thanksgiving on a few days. Plus, I haven’t had the words. I have learned not to push them out. I’ve also been pretty under the weather for the past few days. Thanksgiving night and the day after I ran a temp of 101. No temp tonight.

I’m excited about tomorrow. I am speaking to the advanced biology class at the high school. Their teacher wants me to tell them all about FAP. I have been thinking about what I want to say and how to truly have an impact on them. Today I decided that I would ask them if they remember being 8 years old. This shouldn’t be hard for them to remember. They’re barely pass that now…ha ha. But anyway, then I will ask if they have any particular memories of when they were 8. Hopefully some of them will raise their hands and I will ask what their memory is. After I have heard a few, I will tell them one of my memories of being 8 years old. The first time I saw a doctor for FAP. Then I will continue on from there.

I have a number of thoughts and prayers for this opportunity. First of all, I want to be a wonderful witness for these teenagers. Secondly, one or possibly even more than one of these kids could decide to become a doctor or go into medical research. Maybe something they hear tomorrow could help them make that decision. One of them could be the one that makes a breakthrough for treatment of desmoid tumors or some other area of FAP. I figure the more I talk about and educate people about FAP the better. I am all about being a patient advocate. I feel like I’m on this journey to, I hope, be an encouragement to others. That is my prayer.

I know this is a short post. But it is late. Zach had a basketball game that was an hour and fifteen minutes away. We haven’t been home very long. It’s been a long, long day. I’ll let you know how tomorrow goes.

Quote of the day:

Don’t ask for an easier life. Ask to be a stronger person.
Anonymous

Verse:

The Lord is my strength and my shield; my heart trusts in Him….
Psalm 28:7

Please leave me a note on my guest book. Brighten my day with a piece of sunshine from you.

Thursday, November 25, 2004 7:38 PM CST

HAPPY THANKSGIVING!!!!!!!

I hope you all have had a wonderful day with your families. Today’s post will be a little different.

These are quotes and verses that I have read yesterday and today. I wanted to share them with you.

Quotes:

**Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving. W.T. Purkiser
(Read this one more than once.)

**To the world you might be one person, but to one person you might be the world.
(How true)

**The human heart feels things the eyes cannot see and knows what the mind cannot understand. Robert Vallett

**The future belongs to those who believe in the beauty of their dreams.
Eleanor Roosevelt

**A thankful heart plays a role in the maturity of our faith.

**God asks you and me to put our faith in Him and to believe that we can do whatever He asks us to do. He is mighty to uphold us and make us stand. He will support us and keep us from falling! Joyce Meyer

**It ought to be as habitual to us to thank as to ask. Charles Spurgeon

**Prayer is the peace of our spirit. Jeremy Taylor

**Faith does not concern itself with the entire journey. One step is enough.
Mrs. Charles E. Cowman

**When we are in a situation where Jesus is all we have, we soon discover He is all we really need. Gigi Graham Tchividjian

**Every day is something to cherish. Kerri Strug

**When I first open my eyes upon the morning meadows and look out upon the beautiful world, I thank God I am alive. Ralph Waldo Emerson

Verses:

The Lord said, “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

The Lord is my strength and my shield; my heart trusts in him, and I am helped.
Psalm 28:7

Be still, and know that I am God. Psalm 46:10

And in their prayers for you their hearts will go out to you, because of the surpassing grace God has given you. Thanks be to God for his indescribable gift!
2 Corinthians 9:14-15

Devote yourself to prayer, being watchful and thankful.
Colossians 4:2

Our steps are made firm by the Lord, when he delights in our way; though we stumble, we shall not fall headlong, for the Lord holds us by the hand. Psalm 37:23-24

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. Philippians 3:14

The joy of the Lord is your strength. Nehemiah 8:10

I will end tonight’s post with that verse. How powerful.

I am so very grateful and thankful for this life God has given me.

Wednesday, November 24, 2004 7:43 PM CST

Where do I begin? …….

I know you have been patiently waiting to hear how pain management went. To tell you the truth it has been a very stressful, hard time for me the past few days. I knew I had some pretty big things to get through. But it just seemed like it piled higher and higher. I am very thankful that those things are behind me now. But back to where to start to get you all caught up. This could turn into quite a lengthy post. Which I know for some of you is a bonus. I have told some of you bits and pieces of what has been going on. When I have talked about it I have tried to make it funny or say that you just had to laugh about it.

Okay first let me start by saying that today is my baby’s birthday! He is now an official teenager. I can’t believe it. He had a party last night. That was a blow out. One of the funny moments at his party was when he opened his cell phone. Almost every kid pulled out a phone and asked for his number. Bennie took a picture of all of them. Times have changed. I can’t remember what I got for my 13th birthday, but I know it wasn’t a cell phone.

Back to pain management. You know I had to wait 3 months for this appointment. It’s a good thing I wasn’t dying from the pain. I would have already been 6 feet under…ha ha.
I wrote down 12:30 as my appointment time. My appointment was at 1:00. But you have to be there at 12:30 as a new patient. Well, I got there at 12:05. The office door was locked. I could see the staff in there because the lobby is glassed in. So, I figured they were taking a lunch break and would open the door at 12:30. Well, at 10 till 1 someone walked out and I showed them my paperwork. She informed me that I needed to check in on the second floor. Bennie asked if we could have already been checked in if we had known to go up there. She said yes. When I get to this other office…that we had no clue was there…the lady behind the “closed” glass had no personality and didn’t even acknowledge my presence. I had already filled out a mound of paperwork, but there was another page to fill out there. By this point I was fed up. I stood up in the middle of the room (8 x 8 tiny) to fill this out and then flipped it back on the counter. The packet of papers I had to fill out before coming in had one entire page that had questions like; past medical history, past surgeries related to the pain, and other past surgeries. I drew a line through the page and wrote to the side; please ask me or see medical records. The nurse came out and asked me to fill that part out. I asked her if she was serious. Of course she was. I told her I would do the best I could. But that she had no clue what she was asking. All this time things are building and building. I can’t even do it justice so that you can know and feel what it was like. I finally get called back only to have to fill out more paperwork and be asked a ton of questions. The nurse asked quite a few times (even Bennie commented on this) if I had ever contemplated or tried to commit suicide. I told her that after all I had been through absolutely not and I felt very secure in saying that it wasn’t of any concern. During all of this I ended up in tears. Thankfully Bennie was there with me. Like I said I just can’t do it justice. He reminded me that we had waited a long time to get here to not let all the little things beat me. But I told him that I didn’t have high hopes about this. Because all they were going to do was mask the problems and that didn’t make me feel very comfortable. But in the interest of telling lots of other stuff also, I will get to the main facts. The doctor gave me a script for a new medication to try (not sure about this one) and I go back in 2 weeks to meet with a lady that will teach me how to use a machine on my back. Apparently due to the pain and the way I hold myself because of it my back is a mess. My muscles are like rocks (some people would consider that a good thing….but I guess this isn’t the same…ha ha). So I have to use this machine twice a day for 20 minutes. I am suppose to do this for a month to let them see if it will help. If it does then they will work it out with my insurance company for me to have a home unit. Remember I said that I arrived there at 12:05. Well, we left at 3:30! That’s not because the doctor took that much time with me either. On top of all of this, I hadn’t eaten before I got there. You know that is an issue for me. So Bennie and I stopped to eat real quick because guess what? On top of that Zach had a basketball game. Of course, it wasn’t a home game. No, that would be too easy. It was in Hickman county. So, we ended up finally making it home about 10:30 that night. I was so exhausted my bones hurt. Have you ever been that tired? My brain actually hurt too.

Yesterday, I spent the day getting ready for Zach’s party. Now that was good for some laughs. I made him a cake. He wanted a double chocolate cake. When I took the 2 pans out one of them shattered all over me. Scared me to pieces. Glass went flying everywhere. So after cleaning that mess up it was off to the store for more cake mixes. It was around 2:00 so the day was slipping away. Party time at 7:00 and I still had to get the cake made and iced, pick up the key for the building, decorate and so on. I definitely needed to up the hydrocortisone. But did I? No. You would think that lazy adrenal gland would get the message……WAKE UP!!!!!!
The kids all had a great time. We had about 40 to 45 show up. Because apparently it was “The Party“. I think at this age any party is “The Party” if they can just hang out.

I have more to post. But it will be later. At least this is a start. Didn’t want you to worry. But I do want to end by saying that I had an awesome opportunity to witness to a sweet lady I met today at Media Play. It was incredible. It doesn’t matter what else goes on in life. We always have the opportunity to experience that. I just can’t put that into words yet.

Also, I am going to have to get a calendar to keep up with all the speaking engagements I have coming up… ha ha. I am speaking to the advanced biology class at the high school on Tuesday. Then in January I am suppose to speak at the hereditary colon cancer conference and to a nursing class at an area college. Me. Can you believe it?

I hope you all have a wonderful Thanksgiving. Please know that I am so very thankful for your love, support, prayers and friendship. You are all a blessing in my life. Thank you and I love you!

Quote of the day:

Where there is peace, God is.
George Herbert

Verse:

May the Lord of peace himself give you peace at all times and in every way.
2 Thessalonians 3:16

Peace…what a beautiful word.

I love the words…peace, joy and grace.

Please leave me a note on my guest book.

Sunday, November 21, 2004 9:54 PM CST

Hi. It’s Sunday and you know what I say about Sundays. I love them. I look forward to being with my church family. What a blessing they are in my life! We had our thanksgiving meal and Lord’s Supper this evening at church. You know those Baptist can throw down some food. There were tables and tables of food. You wouldn’t believe the desserts. So you know nobody left there hungry!

This Thanksgiving week I am going to devote my prayers to praising our Father. That is just what is on my heart. I have been listening to some healing tapes by Dr. Creflo A. Dollar, Jr. If you get a chance to hear him (tv, tape or so on) he is very entertaining. I have enjoyed listening to him preach about “praying to the Father in Jesus’ name”. Tonight as I sat in church during the Lord’s Supper I had a wonderful time of prayer. I needed this (the whole day, church) because the day before had been a pretty tough one. Sometimes it’s just so big…but thankfully not for long…answered prayer.

Well, tomorrow is the day! It’s finally here. I see the pain management doctor. It’s a good thing I’m not dying from this pain. It just took 3 months to wait for this appointment. We will see what they have to say. My big thing is that I don’t like taking medicines anyway. So I want them to make the pain go away, but not feel drugged. Can they do that?

Quote for the day:

To be grateful is to recognize the love of God in everything He has given us - and He has given us everything. Every breath we draw is a gift of His love, every moment of existence a gift of grace.
Thomas Merton

Verses:

Every good and perfect gift is from above, coming down from the Father of the heavenly lights.
James 1:17

Praise the Lord. How good it is to sing praises to our God, how pleasant and fitting to praise him!
Psalm 147:1

Give thanks to the Lord, for He is good; His love endures forever.
Psalm 107:1

If you don’t have a church (church family) please find you one. When you find just the right one for you it will comfort your heart and bless your soul.

Friday, November 19, 2004 3:55 PM CST

I want to start this post by saying thank you to all of you. I am so thankful for each of you. I am continually amazed and blessed by your support and response to my journal. It’s just my thoughts, “Pieces of Stephanie”.
My thoughts today………

Deep thankfulness for family and friends, for the love we all share. As I type I am listening to “T.J. Brown”. It’s on Thomas’ cd, which by the way I will see him and Leah tomorrow morning. So if any of you are still wanting cds let me know. Anyway, I love this song and it always brings tears to my eyes. But then “Queen” would say that is just because I am a “Cry Baby”. But in this song he sings about growing up with his cousin. How they were best friends, played like little boys do, and shared the same beliefs. But as they grew up T.J. took a different road. It makes me think about growing up. Isn’t it funny to think about what your dreams were and what you thought your life would be like back when you were a kid? I would have never guessed the road, but I know it is the right one. Now that’s not to say it’s not unbelievably hard at times, just put your head down and bawl. But that’s where answered prayer is never failing. The phone call, the email, the note, a visit, a card, and etc. these are all things that continually keep me lifted up; that and all of the prayers. You talk about my strength, well I am strong because of my faith, God’s love, and your love and prayers. So you see, it’s a team thing and each part of the team is so important.

I hope you all have a wonderful weekend! I have to get back to my necklace making.

Quote of the day:

When the storms of life are thundering around us, if we’ll just stop right in the middle of it all and give thanks, it will keep us standing strong.
Kenneth Copeland

Verse:

Because of the Lord’s great love we are not consumed, for his compassions never fail.
Lamentations 3:22

I would still love to read what some of your favorites quotes or verses are. You know I love them.

Thursday, November 18, 2004 1:47 PM CST

****This is an "after the post" addition. I wanted to put it here at the top even though it is about something I posted at the end. I didn't want the ones that already read this post to miss it. For those of you that are just reading you will understand when you get to the last sentence of the post. As I was driving back home this afternoon in the rain, the sky was full of heavy rain clouds. But guess what? In all that rain the sun shined through the clouds just enough to show a beautiful "Doorway to Heaven". Answered prayer once again. Just a little bit of sunshine. Lets keep praying. Because that was a small thing.

Okay, I am probably going to get in trouble (again) for this post. You have to understand this journal is exactly that…my journal, my thoughts and some of my feelings. It’s easier to type some of this stuff out. So, I am ready for the calls and emails after you (you know who I am talking about) read this.

I have told you that music is a huge comfort to me. I have been listening to my Absolute Worship cd for the past few days. Some days I will listen straight through my cds. Some days a particular song might really touch me and I will listen to it over and over again. Today I have been listening to “Be Near”. This is really ministering to my heart and soul. Okay here’s the part that could get me in trouble. It’s times like this, when the pain is just wearing me out, plus on top of that I am dealing with the ear infections and upper respiratory infection. I’m just a whipped puppy, but still trying to be and do all the things that I have always done. Okay, I am sounding whiney, aren’t I? When I am going through times like this I hold tight to the words in “Be Near”, “Be near oh God, Be near oh God.” Sometimes that is all I can get out. But that is all that matters. All that has to be said.
I told a friend of mine that this has just been tough. Dealing with the after effects of the adrenalectomy and trying to understand the way I feel is hard. Sometimes when I am just at my end, exhausted, but trying to cover, I get short. I try to get by myself when that happens. The other night that happened with Bennie and Zach. Of course, they realize that is what happens. But I tried to explain it better to Bennie. Because they are relating it to just pain. It’s a combination of things. I am usually overly tired, at a pretty high pain level, and I should have probably taken more medicine for that day. I told Bennie that when that happens I try to keep my outside calm, but the inside is just horrible, so not me. I know, I know some of you won’t believe this, but when I get to this point, on the inside I just feel like screaming and clawing my skin. Everyday of our lives we deal with things all day long that we sometimes don’t even realize put stress on our bodies. I don’t have that luxury right now. The only cortisol (your stress hormone that helps you handle things) I have is what I take in the morning. Everyday I only take one. But there are times that I have to automatically double or triple it; like when I am sick or have a procedure done. I also have to get an iv dose when I have a procedure done, because it puts stress on your body to go through it even though you are asleep
It’s hard to know sometimes when to up the dose. Because it’s kind of a catch 22. You have to give your body extra to cope and live (you can’t live without this hormone) in certain situations. But also, we are waiting for my right one to wake up and do this job. So, part of me is like, I don’t want to give my right adrenal the impression it can just continue to snooze away. So, you see it is a tough call. Bennie says that I am the best actress, Oscar material. That’s funny.

I think I have posted about this before (chemo brain). I am not sad, mad, upset, angry, or any of those words that this is a part of my life. The way I choose to look at this is, this is my journey that God has chosen for me. We are walking this together. He has been beside me every step of the way (along with all of you). I also always say that I am honored that He believes in me and my faith. Because He never gives us more than we can bear. So, you see, this journey is a blessing and a gift. That is how I live this.
Thank you for sharing this with me. Thank you for caring about my journal ramblings. I love sharing this with you and reading your notes and emails about your thoughts.

Quote of the day:

Grace is but glory begun, and glory is but grace perfected.
Jonathan Edwards

Verse:

Wait for the Lord; be strong and take heart and wait for the Lord.
Psalm 27:14

I would love a little slice of sunshine on this cloudy day….hint, hint.

Wednesday, November 17, 2004 11:38 PM CST

1. Tonsilectomy
2. Colectomy
3. Hysterectomy
4. Adrenalectomy
5. Ampulectomy

What do all of these things have in common?

They are all surgeries that have been (the last one is to be scheduled) done on me. At this rate there isn’t going to be much left to donate…ha ha.

I had to leave my house by 6:45 am to be at Vanderbilt for my exciting day of blood work and doctors appointments. I didn’t get to bed until 2:30 am and the alarm went off at 5:45 am. Even in that short space of time I was still up twice. Not sure how much sleep I actually got….not much, that’s for sure. But anyway, let me try to catch you up to date. I got a good bit of information today. After I had my blood drawn, I went to medical records to get copies of my last 2 procedures. I have a file for all of this so I can stay informed. My last officially ct was on October 20th. But last Friday when I went in to have the drain placed they have to run scans to be able to place the drain. According to the report there are (as we already know) several mesenteric desmoids that are unchanged in size (no shrinkage yet). I also got a copy of the report from my endoscopes ultrasound. I wanted to read that one before I saw the doctor. That way I can be prepared. But he still threw me for a little loop. I went in ready for him to talk about how he would do another scope to either burn or cut the polyps out of my ampulla. That’s not what he said. Here’s the little loop, I have to have an ampulectomy. I asked if it could be out patient and his response was, “No dice.” I will be in at least overnight. There is a chance that this can cause pancreatitis. We need to say lots of prayers for me to skip this complication. I’ve had my fair share and that is one I want to avoid. I know some of you are wondering what an ampulectomy is. Your bile duct and pancreatic duct come together to form the ampulla. The doctor will place a stent to keep this area open.

There is more. But I am stopping here for now. It’s been a long, stressful day. By the way, my adrenal gland is still sound asleep. I’ll post more tomorrow. Oh yeah, I have another ear infection in both ears and upper respiratory junk. I feel puny.

Quote of the day:

No one can believe how powerful prayer is and what it can effect, except those who have learned it by experience.
Martin Luther

Verse:

This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us.
1 John 5:14

Please leave me a note on my guest book. It’s like a little piece of “sunshine”.

7

Monday, November 15, 2004 9:35 PM CST

Hi everybody.

I was away this weekend…a little retreat with some of my “girlfriends”. It was a wonderful weekend. Thank you girls for all of your love and pampering. It was fun just to be “Girls”. Saturday night we did our Sunday school lesson and then had an extended time of prayer. During this time I looked at each of these women and my thoughts were some of the following; I am so blessed to have all of you in my life (that this, our love for each other is what life is all about) and enjoying each other and sharing our faith, needs and celebrating each others victories. I looked at you all and thought about how God brought each of you into my life. You each have your own special place in my heart and I love you!
You know some people live their entire life and don’t ever understand what it is all about. That is so sad. Because no matter what happens to me in this life, God has blessed me with gifts (all of my friends and family) that are more precious than gold. Thank you for sharing yourselves with me. You make my life more beautiful.

Quote of the day:

God is the owner; I’m the manager. Every resource, every blessing I have today is a gift of God.
John C. Maxwell

Verse:

I will praise You, O Lord, with all my heart; I will tell of all Your wonders. I will be glad and rejoice in You; I will sing praise to Your name, O Most High.
Psalm 9:1-2

Just one more thought…..
I have thought about your question and my answer since Saturday night, and my answer is definitely a resounding YES. It is very well with my soul.

Friday, November 12, 2004 2:58 PM CST

Good morning!

I want to start this post by saying, yesterday didn’t go as the doctors planned. That’s not to say that it wasn’t exactly what God’s plan was. Yes, yesterday I was a little down and numb because they were not able to get the drain in where it needed to be. They worked and worked, pushed and pushed to no avail. The abscess actually is surrounded by my small intestines. There was no way that they could get the drain in where it needed to be without risking damage to my intestines. So, I am in the wait and see mode. But that’s okay. Because to tell you the truth I didn’t have a good feeling about the drain this time anyway.

Next week I have a few days at Vanderbilt. I have to have blood drawn for my cortisol, vitamin D and B-12 levels. Then see a couple of doctors. I am waiting to hear back from my surgeon for the name of another ENT. I’m definitely not going to let the one I have seen touch my neck again. Now that is not to say he isn’t a good doctor. He is a very nice person. But nice is not going to do the trick for me. I don’t feel he has the knowledge or experience he needs to treat me as a patient. That is not in any way his fault. I just happen to have a syndrome that is very rare. So it is up to me to make sure I see doctors that have the knowledge they need to best treat me.

I don’t have much else to post for now. I am quite sore today. But that is to be expected. What would you expect if they punctured your skin and then for the next hour pushed and pushed to try to get a drain inside of you? Sore, but that will pass. I am happy for today.

Go out and live life! Hug someone who isn’t expecting it. Tell everyone you love that you love them. Remember…”Make today count!”

Quote of the day:

MAKE TODAY COUNT!!!!!!!!
(I decided I liked that so much that it would be the quote. You know none of us are promised tomorrow. So what matters is what we do with today.)

Verse:

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Mark 11:24

I love and cherish your notes!

6

Thursday, November 11, 2004 8:25 PM CST

Hi.

I wanted to let you all know that I am home. Things didn’t go as planned. I will post more tomorrow morning. I’m very tired and sore. There was no resolve today.

Quote of the day:

Trusting in God brings peace.
Unknown

Verse:

He will have no fear of bad news; his heart is steadfast, trusting in the Lord.
Psalm 112:7

Please leave me a note. I could use the little bit of sunshine.

Wednesday, November 10, 2004 5:09 PM CST

Good morning!

Today I want to talk about other things besides doctors, procedures, pain level, and other medical stuff. That’s not to say that at the end I might add something. But for the most part my thoughts are elsewhere this morning.

In the past week I have been to our high school a number of times. The girls and teachers are crazy for my necklaces. I can’t get enough of them made. Now that’s a good problem to have, isn’t it. I enjoy making these and am happy others seem to like them so much. I also have spent some time with my nephew who is a junior at this school. It’s fun to listen to them. It brings back memories of when I was in school.
Of course, the funny thing and you know how I love to tell you funny stuff, is that on a number of occasions and by students and teachers I have been mistaken for a student. How funny is that? People have always thought I was younger than I am. When I was a teenager that wasn’t something I liked. But now as an adult, it is something that I am very thankful for. To me, age has always been just a number. I always tell people that God has blessed me with an all right outside, it’s just the inside that we are working on. Don’t let the number be all consuming. It is just a number. I gladly tell anybody that ask how old I am. Someone asked me one time why I blurt out my age so freely. My answer was that I had earned every one of those years and I am very thankful for them. So be thankful for the years you have been blessed with. They are a gift.

Okay, okay, I will tell you some medical stuff. But I’m not talking about pain this morning. I talked with one of my doctors last night. We had a good conversation about a number of things. It is so important for a patient to feel like they connect with their doctor, especially when the patient has a chronic illness. You need to feel like you are all a part of a team. Because that is what it takes to get the best care, a team working together for the health of the patient. We talked about the possibility of me becoming a patient advocate for FAP and starting a registry in TN for colon cancer. I am very excited about being able to be a part of this. This is exactly what I have wanted to do. I have always said that if I could help at least one person than it would be worth it all. Please be in prayer about this. It is so important to do this. Because there are so many people out there that need to be educated about colon cancer. They need to know that it’s not just their grandparents that have to worry about it. It affects all ages. It’s important to know your family history. So you know if you are at an increased risk for any genetic or hereditary cancers, not just colon cancer.

Girl, you need to jump back off that soap box…..
I’m done preaching. Anyway, I hope you all enjoy your day. Take care. I am as ready as I can be for tomorrow to get here.

Quote of the day:

Believing that you are loved will set you free to be who God created you to be. So rest in His love and just be yourself.
Lisa Whelchel

Verse:

The Lord’s loving kindnesses indeed never cease, for His compassions never fail. They are new every morning. Great is Thy faithfulness.
Lamentations 3:22-23

Tuesday, November 9, 2004 5:26 AM CST

I have been thinking and thinking since I spoke yesterday. I know you have been waiting patiently. So let me just start by saying….

OH MY GOODNESS!!!!!!!

It was amazing! All of the prayers were so answered. I don’t even know if I can put it all into words. But I will do my best to share it with you.

I have already told you about how I have not ever been able to speak in public. I use to sell contract contract office furniture. Every year we would have a national sales meeting. Let me tell you, the stress and nervousness of being in such a large group of people with the possibility of being asked to speak would actually make me physically sick. I always felt like I was trying to be someone I wasn’t. I never quite felt like I fit in.

So now you can understand a little better just how amazing yesterday was. I am still floating. Okay so where do I begin? I’m afraid this might be a pretty long post. I know some of you are probably happy about that. Because you say the longer the better. So here goes. I hope I can do a good job of sharing it with you.

Yesterday morning I started the day by listening to my cd, Faith Comes By Hearing. My church as a whole is doing this. Then you know I had to listen to my music. I sat down and typed up some of my thoughts, things I wanted to make sure to talk about. I did this just in case my nerves got me rattled. All morning I was just as calm as could be. Once I arrived at Opryland Convention Center I did start to get a little nervous. But not anything like in the past. My friend and I prayed right before we walked into where these nurse were meeting. The group turned out to be about 40 women. The other lady that was speaking and I sat in front of this group. She spoke first because she had to leave early. I was a little nervous during the time she spoke. Then before I knew it, it was my turn…..

Before I spoke they showed some slides to give the group a little information about FAP. Then it was all up to me. Let me just tell you, prayers were so incredibly answered. I will tell you like I told the group. Whenever I get nervous or sometimes excited about things I break out in red splotches across my chest, up my neck and sometimes when they are really bad even on my jaw line. So you would think I would wear a turtleneck yesterday, right? Well, no! I wore one of my favorite tops that has a round neck line. No way to hide the hives if they came. I did have on the prettiest pink fuzzy scarf though. I just had it hanging around my neck because it was a little chilly outside. So, when I started to talk I just decided to let it all out. I told them about how I had not ever been able to speak in public like this before. I also told them that I had joked about wrapping my scarf around my neck to hide the effects of those fears…hives. Then I said that they knew my secret and I could move on. Earlier I had timed how long it took to say what I had typed. Because even though it was a page and a half typed, I knew that it wouldn’t take very long to read. I had about 5 minutes. When I started speaking I had the most incredible calm. I did have a couple of times while I was speaking where my heart would race and I would feel nervous, but you know that was because I was so excited that I was able to be a part of this. I talked and talked. God gave me the words, strength and courage. He answered all of our prayers over and above what I could imagine.

I told the group about my life experience with FAP; being scoped for the first time when I was 8, how I didn’t understand why the doctor and nurse were hurting me, being diagnosed at 12 with surgery just before I turned 15 and on and on. I also talked about …
Why don’t I just post my notes…that way it will tell you most of what I said. But not all. I can’t remember everything I said. I laughed with Bennie, my mother and some of my friends and said that I was a maniac, that I talked and talked.

My notes ( I ended up adlibbing. But I did talk about all of this and then some. I did leave out the first part about FAP because the slides showed that.)

My name is Stephanie and I have FAP, Familial Adenomatous Polyposis, which is a mouthful. It is also known as Gardner’s Syndrome and that can get you a lot of funny comments.

FAP affects 1 in 10,000 people. Men and women are equally affected. FAP arises because of a mutation in the APC gene (on chromosome 5). This gene is suppose to regulate cell growth. But because of this mutation people with FAP develop 100’s to 1,000’s of polyps in their gastrointestinal tract. We can also have; desmoid tumors, osteomas, epidermoid cysts, and an increase risk of developing certain other cancers including: cancer in the duodenum, thyroid, brain, liver, pancreas, and adrenal.

I mentioned demoid tumors. I also like to call these tumors, desmonsters. Because they are truly monsters to deal with. A lot of you have probably never heard of desmoids. That’s normal. There are many doctors that go through their entire practice and never have a patient with FAP, much less a desmoid. They are very rare, fibrous tumors. They occur in 5 to 10% of people with FAP. Although these tumors are not malignant, they can cause major problems by invading surrounding tissues. They can be very difficult to remove surgically. Individuals with desmoid tumors have a 1 in 5 risk of death.
I have 4 desmoids; 3 in my abdomen and one in my neck.

My first experience with FAP was at the age of 8. That was the first time I was scoped. Of course, I didn’t understand anything about it. Back then it was a lot different. Hospitals were not as child-friendly as they are today. All I knew was that this doctor and nurse were hurting me and I didn’t understand why. I was scoped other times until at the age of 12 I was officially diagnosed. Then just before I turned 15 I had my first surgery, a colectomy.

My family and I didn’t know all there was to know about FAP. I just thought that I had to do my follow up scopes, have the polyps burned away, and life would go merrily on. Well, after the birth, by c-section, of our son things changed. I developed my first desmoid and the roller coaster officially started. I will say that the last 3 or 4 years have been the toughest.

I also want to talk to you today about genetic testing and counseling. When our son was 8 we decided to get tested. I think that this is a very valuable tool for families with genetic and hereditary syndromes. The way I feel is that by doing this, no matter what the outcome, it empowers the family to be able to seek better medical treatment. And in the case of our son, less invasive. Although, of course, he will tell you his own horror story of having his blood drawn for the testing. We are very thankful we had this done. He does not have this defective gene. But we will probably, as a extra protective measure still have him scoped when he is in his late teens. Because our son doesn’t have this defective gene, it stops with me. Now that is a wonderful blessing.

I could go on and on. But I would like to give you the opportunity to ask any questions that you might have.

Thank you for allowing me to speak to you today

There is so much more that I said. It was just so incredible to be a part of this. There were a lot of questions. My friend said that her favorite moment was when I got to share my faith with them. That was great.

Afterwards I was so excited that I laughed and said that it was the best pain medicine. I was on the best natural high. I just couldn’t put words to it. I still can’t adequately.
And guess what? Not a single hive!

Okay, so prayer buddies….
Big prayers are needed. After I settled back down from floating in the clouds the pain level has increased. As you can tell by the time of this post, I am having trouble sleeping and it is because the pain now is almost a 10. It has been a while since I have had to deal with it being this high and intense. Sleep is not possible when it is like this. At least not until the pain medicine kicks in. When I got home last night my level was a good 7 almost 8. I should have taken medicine then. But sometimes if I take a hot bath and then sleep with a heating pad it will ease up. But it didn’t work. So, now I am trying to play catch up to get ahead of the pain. Of course, you know this is a scary thing for us. Because it could mean that the tumors have grown, or are obstructing my small intestines, or something like that. I left a message for my surgeon yesterday to let him know that I am concerned. Hopefully I will hear from him today. You know, I can’t say that I am looking forward to having another drain put in and all that that entails. But if it helps relieve some of the pressure and pain then I will endure whatever I have to.

Okay, so lets get back to a more positive note. I want to thank you with all of my heart for your prayers, friendship and support. You are all such an incredible blessing to me.
Oh and I already have another speaking engagement, in January for the Hereditary Colon Cancer Conference. There are a couple of other times people talk to me about also. I am so excited about this wonderful opportunity.

Okay I am going to stop here for now. Today will be a good day. If you think it, it will be.

Quote of the day:

Your attitude, determines your altitude.
Unknown

Verses:

Never worry about anything. But in every situation let God know what you need in prayers and requests while giving thanks. Then God’s peace, which goes beyond anything we can imagine, will guard your thoughts and emotions through Christ Jesus.
Philippians 4:6-7

Don’t forget to check out my guest book. I love your notes. They brighten my day so much! If any of you have questions or are just curious, email me or ask on my guest book and I will either email you bac

Monday, November 8, 2004 10:07 AM CST

Good morning!

I just thought I would post a short piece this morning. I am still just as calm as can be about today. Thank you God. Also, thank you friends for your prayers. I am actually excited about this, which is so out of character for me…speaking in public. But that is the past and now I have important things to share.

I am working on the last few little notes I am taking with me for reminders. Of course, I am listening to my favorite music and just getting ready for the day. Pain is still an issue. I will call the surgeon to let him know (level 7). But I will not be stopped from doing this today. I have the determination and will deal with the other later.

I will try to post later about how everything goes.

Quote of the day:

When you are motivated by goals that have deep meaning,
By dreams that need completion,
By pure love that needs expressing,
Then we truly live life.
Anderson

Verses:

I sought the Lord, and he answered me; he delivered me from all my fears.
Psalm 34:4

I am willing to endure anything if it will bring salvation and eternal glory in Christ Jesus to those God has chosen.
2 Timothy 2:10

Today is a fabulous, sunshine day. Thank you God for the day and all your many blessings!

Sunday, November 7, 2004 4:35 PM CST

Hi!

Today is Sunday and you know how I do love my Sundays. Today was another great day at ss and church. I enjoy the day so much. We had open altar for prayer at the beginning of service today. I went up to pray about this week and to just give it to the Lord. One of my dear (don’t know what I would do without her) friends came up, put her arm around me and prayed with me. You know, I am so incredibly blessed. God has surrounded me with such wonderful friends. Bennie says that is just awesome to watch all of us together. Each of these women are so special and important to me. They are such a strength and encouragement. You should know who you are (my cabin buddies, can’t wait for next weekend! Boy, will we have some fun and laughs.) Okay back to the open altar. Like I said, my friend and I were praying. As we were praying I got one of my breathtaking pains I get in my spine. It was so bad I could feel my body shaking and the tears flood my eyes. When this happens it feels like it last forever. But it probably only last a minute or less. But let me just tell you, it is stop what you are doing kind of pain. I know why it happened right then. It’s the devil. I know that because he will try to do anything he can to scare me about tomorrow. For those of you that know me, you know that I have not ever been one to speak in public. I have always been a very quiet person. Just the thought of speaking even in a small group like Sunday school could give me hives. But I am very calm about tomorrow. This morning I thought about how surprisingly calm I was about speaking to who knows how many people. Then I stopped and thought, no I’m not surprised because I know with all my heart that this is what I am suppose to do. Also, I’m not surprised because it is answered prayer. So many of you are praying and it is amazing to feel the calm and comfort in the knowledge of that. It’s just awesome. Now that is not to say that I might not get a little nervous before I speak…but you know what? That’s okay. That’s human. I am just going to get up there and speak from the heart about something that is a part of my life. I have decided that I will start by telling them how for as long as I can remember whenever I have to go for a procedure, test, or anything that I am nervous or scared about I always say “my verse” to calm myself. Isaiah 26:4 Trust ye in the Lord forever, for in the Lord, Jehovah, is everlasting strength.
The session I am a part of is from 3:30 - 5:00. They have invited me to have dinner with them afterwards. Thank you to all of you for your continued prayers. This is just the start of what I know I am suppose to do. Thank you for sharing this with me.

This afternoon has continued to be a tough one. After lunch the pain level, which had been at a everyday 3, increased to a 7 then bumped on up to a steady 8. When I get there it is very hard for me to do much of anything. I was worried earlier because I didn’t want anything to interfere with tomorrow. But I am determined. The pain has eased back up a bit. I’m at about a 6.

I think I will stop here for now because I need to work on a few notes for tomorrow. I hope you are enjoying your Sunday afternoon.

Quotes of the day: (I couldn’t pick just one. I loved them both.)

The crown of victory is promised only to those who engage in the struggle.
St. Augustine

Faith does not concern itself with the entire journey. One step is enough.
Mrs. Charles E. Cowman

Verse:

Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.
Isaiah 46:4

Thank you, Father for that promise and for loving me so much!

Saturday, November 6, 2004 5:34 PM CST

Hi everybody. I hope you all have enjoyed your Saturday. I have. I got to spend some time (of course, it’s never long enough) with my mother. We always have so much fun together. That can make any day a good one no matter what else is going on. I am so blessed to have her for my mother and best friend.

You know I have told you that I get a lot of comfort and strength from music. I have my regular (Thomas & Leah) that I listen to and a few others. It’s funny how one song will just all of a sudden speak out to me. I get on a kick and listen to it over and over again. The past couple of days it has been a song that has these words…

Holy fire, burn away, my desire for anything that is not of You and is of me
I want more of You and less of me
Empty me, empty me
Fill, won’t You fill me,
With You, with You
I want more, I want more,
I want more of You, Jesus.
Thank You Jesus.

I just really love those words. They have really been ministering to my heart.

Quote of the day:

“The Lord will either calm your storm…
Or allow it to rage while He calms you.”
Unknown

Verse:

Come near to God and he will come near to you.
James 4:8

Friday, November 5, 2004 6:32 PM CST

Hey!

Okay, okay, for those of you that have emailed me and called me to ask…today is actually better…4. I’ll take that any day over a 7. I have had a busy day today, between trying to get my necklace orders ready and working on my talk (I like that better then speech because that is really what I will do) for Monday. It is going pretty good so far. At first I thought, how in the world can I fill more than 5 minutes? Because you know you can say a lot in a short period of time. But now that I have started writing my thoughts down I think it will be fine. I am very blessed to have some sweet friends that want to go with me for support.

I do have news for you today. I talked to my surgeon’s secretary yesterday. She said that he had scheduled for me to have the drain placed once again in hopes that this will do the trick to collapse the fluid/air filled area. They call this something different all the time. So I just call it an “Area”. In the past the drain did not work. I actually ended up have complications from it. For some reason this area in my abdomen has been a problem every since the first surgery. But you know, you just have to keep trying in hopes that maybe this time will be the time it works. I have to admit to you when I was talking to her about this I got the sickest feeling in my stomach, just the thought of the procedure and then dealing with the drain. But the “Big Girl” shoes are on and I am ready to march on! So Thursday is the day.

I hope you all have a wonderful weekend! I think it is suppose to be really pretty here in Nashville..but colder. But then again it is November. What do we expect?

Quote of the day:

We have to remember that while we want to change our circumstances - God wants to use our circumstances to change us.
Beth Moore

Verse:

Let us hold unswervingly to the hope we profess, for he who promised is faithful.
Hebrews10:23

Thursday, November 4, 2004 2:10 PM CST

I have to start this post with thanks and praise for answered prayer. Without that assurance we get from even the smallest of answers where would we be? I am so thankful and blessed. I can feel your prayers. Please keep sending them up. I know the devil would like to knock me down. I am keeping my thoughts clear and thinking positively about the opportunity I have on Monday to make a difference in the care and understanding of patients with chronic illnesses. Also to give these nurses a face (a person) for FAP.

I want to say thank you to my buddies (and you know who you are) that send me the most wonderful cards with the most beautiful quotes and scriptures. They have also evidently found out how much I love butterflies. You all are doing such a special ministry for me. The few minutes you spend signing these cards are such a blessing and encouragement to me. I am amazed and overwhelmed by the beautiful things you write to me. Today I received 2 of your cards. The things you wrote in both cards brought tears to my eyes. This is just another example of answered prayer. Just when I needed a little boost…I got a double boost! Thank you for sharing yourselves with me. I love you!

Oh, Bennie wanted me to post that we have AKC Boxer puppies. So if any of you have the hankering for a boxer puppy just email me. They will be 4 weeks old tomorrow. They are the cutest things. We have 2 boys and 4 girls.

I went to physical therapy today. My therapist changed things up again. She said that I am a tough case. Since the ENT doctor said that the tumor has grown in the last month she decided to do ultrasound, soft tissue therapy, and traction.

Okay I will give you the level for today. Some of you fuss when I go a while without letting you know. I am going to be very honest with you….level 7. It even hurts to breathe. My pain now is not only the back and abdomen, but also the shoulder and neck on my right side. My complaint with the ENT doctor is that he is so quick to want to do surgery. When actually there are a number of reasons I could be having this pain. It could be trouble with my pancreas, duodenum, or gallbladder…oh and of course, it could very well be the tumor in my neck. But lets rule out the others before we jump to more surgery. I was talking to Bennie about this last night. I told him all of this and then I stopped and you know what I said? I don’t believe I have said this before…..
I deserve better than this. After I said it I was quiet for a minute and then I said it again. Because you know what? It is up to me to let them know that I deserve better than that. It is time for the control to be turned over. This is my care, my body, my life. I don’t believe any one of these doctors are taking these issues as seriously as they need to. When you go to a teaching hospital for treatment, unfortunately you can become a number. So you just have to take charge of your care. I told my physical therapist today that I was just trying to make it to the 22nd for pain management. But I also said that it would just be help in masking the problems. She said that might be all I can hope for right now because of the tumors.
I have a few different doctors and stuff that some of you have emailed me to try. I am always open to any suggestions that you might have. SO please feel free to share them with me.

Quote of the day:

“The best and most beautiful things in this world cannot be seen or even heard, but must be felt within the heart.”
Helen Keller
(Thank you Mr. B. for this.)

Verse:

“…He is the source of every mercy and the God who comforts us. He comforts us in all our troubles so that we can comfort others. When others are troubled, we will be able to give them the same comfort God has given us.”
2 Corinthians 1:3-4

Wednesday, November 3, 2004 4:18 PM CST

Good afternoon!

Well, it looks like I have a bunch of stuff to tell you. I’ll start with the best first. I’m not going to save it till last. I have my first speaking engagement on Monday. It is for the Advanced Care Nursing National conference at Opryland Convention Center. Please be in prayer for this. Pray that God will give me the words and an inner peace to be able to speak to these people. I feel that it is very important for me to do this. There is another person that will speak about breast cancer. The nurses that are attending have knowledge about breast cancer and the gene that causes it. They are not knowledgeable about FAP. So, I am excited about sharing my knowledge of FAP with them. But even more important, being able to share what it is like to be a patient with a chronic illness. I want to stress how important the “Team” concept is for the patient, doctors, and nurses. Anyway, I am working on my notes and nerves…ha ha. I have known that this was coming. I know that I am suppose to do this. So, please pray with me about this. Thank you so much. The time for the session I am in is from 3:30 - 5:00 on Monday.

Okay, so on to the other stuff now. I have made phone calls this week to try to get some things taken care of. I have heard back from some of them. Finally talked to my ENT doctor. Let me just put in right here that I don’t think he is the doctor for me. I actually told my surgeon’s secretary that today. When I spoke to him (like always) he was very quick to recommend surgery. Now I know that sometimes that is the best thing to do. But lets think about this for a minute…no a second….we’re talking about my neck. There isn’t that much that can be safely cut away without defects to the area. Every
time I have ever spoken with him he has always talked about surgery. I don’t feel comfortable or confident in his knowledge or ability to handle desmoid tumors. He is a very nice person. But nice is not going to help me with this. So, I told my surgeon’s secretary all of this and asked her to talk to him about who I could see instead. She told me she had spoken with my surgeon and the other doctor about the needle aspiration of my abdomen. I’m not sure if that will be done now or after the holidays. They are going to call me back about that. They have decided that I will most likely have to come home with a drain for that.

There is more that I want to post about but my mind is racing. So I will stop here for now. Maybe more later, we’ll see.

Level 7

Quote of the day:

Waiting is the hardest kind of work, but God knows best, and we may joyfully leave all in His hands.
Lottie Moon

Verse:

I trust in You, O Lord, I say, “You are my God.” My times are in Your hand.
Psalm 31:14-15

Please click on my guest book, leave me a favorite quote, scripture, joke or just a note to brighten my day

Tuesday, November 2, 2004 8:52 AM CST

(This was typed last night at midnight. But surprise, surprise the website was not responding once again.)

Hi.

I know I am posting late. Zach had his first official middle school basketball game tonight. Then after that a group of my girlfriends went to celebrate one of their birthday. Boy, did we have a good time laughing and carrying on. You know God gives us laughter and those special friendships because it is so good for the soul. I told these women that I love them and that each one of them are very special and important in my life. I also have to add that another friend and her husband invited me to lunch today. We had a great time at lunch sharing scripture and just catching up. I want to say that today was just another example of answered prayer. I know I am always posting about answered prayer, but that is because I want you to know what is happening and also I want to thank God for His love. There was no reason why today should have been such a busy full day and to tell you the truth it was God that gave me the strength to be able to be a part of all of this today. He knew that I needed to be able to be a part of all of this. He knew that I needed this time.
To my soul sister, yes, I did what I promised I would do tonight. I will let you know how it works out tomorrow.

Well, lets see what I can catch you up on….
I went back to physical therapy today. I have been out a month, between the scopes and not feeling well. Today my therapist decided to re-evaluate me. I have noticeable decrease in range of motion and strength. So, she decided to hold off on exercises until I hear back from my ENT doctor. He is checking out the films on my last 2 MRIs to see if there has been any growth in the tumor on my neck. Hopefully I will hear back from him tomorrow.
I also went ahead and made my appointment to see the doctor that will take care of these polyps I have in my duodenum. But I can’t see him until the 17th. So in the next 2 weeks I will see him, schedule that procedure (out patient), get blood work for my cortical, vitamin D and B-12 level, see my endocrinologist, see pain management, and I am sure I am forgetting something. I also made some phone calls about another out patient procedure I need to have done. Still waiting to hear back from one of those doctors.

But that is enough about that stuff. There is more to me than just that. I am very thankful and blessed in so many ways in my life. I give the praise and glory to my Father who loves me. Thank you!

Quote of the day:

Prayer is the peace of our spirit.
Jeremy Taylor

Verse:

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18

This is so true. Thank you friend for sharing that with me.
Even when I am in the “I don’t like this game” mood, even when I am totally exhausted, I still know that this is my journey. I still know that there is a purpose and a reason for this. So, I always pray that God guides and directs me to be a positive influence in people’s lives.

This is the end of the post here. You know I’m not even sure how much sense any of this makes. It’s just what popped right out of my head. I’m tired and hope it makes some sense. Good night.

Well, as you can see, the website wasn’t responding last night. So, now I will just go ahead and add a little bit more this morning.

Today is the day. Go out and make your vote count. Don’t miss your opportunity.

I don’t really have anymore words right now. Maybe I’ll post again later. That is if the website will cooperate. I hope you all have a wonderful day.

Quote of the day:

He stands fast as your rock, steadfast as your safeguard, sleepless as your watcher, valiant as your champion.
C. H. Spurgeon

Don’t you just love that? Isn’t it awesome?

Verses:

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
2 Corinthians 4:17

Cast all your anxiety on him because he cares for you.
1 Peter 5:7

Sunday, October 31, 2004 7:05 PM CST

I want to start this post by saying,

Thank you God!

Thank you for loving me so much that you bring such wonderful friends into my life. Having all of you in my life is such a blessing. As I have told you, I have been having a tough time the last few days; pain, emotions, exhaustion and so on. Sometimes it’s just hard, I will be honest with you. This morning before church I was having a tough time with pain and just not feeling well. I think the devil knows how much I look forward to Sundays, so he tries his best to defeat me. But I pushed through. I was quiet in ss class. If you spend any time around me you will notice, if I’m not feeling well I am quiet or sometimes when I am in pain I shake my foot. The foot shaking is more often when someone is sticking me with a needle, changing a dressing, or so on. So now you know some of my secrets.
Like I have said, I love Sundays. Bennie and Zach laugh at me just about every Sunday because I always end up saying during the afternoon, “I love our church.” But it is so true. God has blessed us with such a wonderful church family. I want to say this about our ss class. We are studying about prayer now. While I was in class I wondered how I was going to make it through class and church. As I sat there I just thought, “Please make this pain go away. God, I’ve gotten use to the pain in my back and abdomen for the most part. I’ve learned how to handle it with a smile. But please, please, it hurts now more and more in my shoulder, arm and neck.” My joke when things get hard to cope with is to say…”I don’t like this game and I don’t want to play it anymore.” After my last surgery, while I was in recovery, every person that came in to see me, that is what they heard. I wasn’t really coherent, but I knew that the surgery had been tough. Well, today, and for the last couple of days the little girl in me just wanted to pout and say, “I don’t like this game and I don’t want to play it anymore.” But you know what? Surely you can guess what happened….
Answered prayer once again. At the end of ss class our teacher said that the class as a whole was going to pray for something or somebody. He opened it up. One of the guys in our class said, “Lets pray for Stephanie.” I had not said a word through the entire class. So no one had a clue how badly I needed that prayer. Whoever wanted to pray took their turn. They were so wonderful, remembering my boys too. Of course, by the end most of us were in tears. But you know what? My pain level before prayer had reached about a 8. After prayer it was down to a 4. Answered prayer.
On my way home later in the afternoon, I was kind of teary again. As I was driving I looked up into the sky and my breathe caught. I saw the most beautiful “Doorway to Heaven”. I’ve posted about these before. This one was truly magnificent. I don’t believe I’ve ever seen one quite so beautiful. I said thank you right then. Because you know to me that is a gift, an assurance from my God. It tells me that He loves me and is here with me. That it is okay to get tired and not want to play the game sometimes. That is why He has surrounded me with so many wonderful friends and family. I am truly blessed. Thank you.
I hope you all have had a great Halloween weekend.
I’ve already used this quote before. But I really love what it says.

Quote of the day:

A little faith will bring your soul to heaven, but a lot of faith will bring heaven to your soul.
D. L. Moody

Isn’t that incredible?

Verses:

If two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.
Matthew 18:19-20

Don’t forget to check out my guest book. Leave me a note there or send me an email. What a way to brighten my day!

Sunday, October 31, 2004 2:06 AM CST

Hi everybody.

I don’t think I have much to post today. I have been having a tough last couple of days. But you know what, the sun is shining and it is a beautiful Fall day. Some days I just have to take moment by moment. I woke up this morning at a 6 which is always a disappointment to start out at. It doesn’t matter what I do. There isn’t any one thing or combination of things that bring on the pain. I know that it is just the way these desmoids are. I do know the more tired I am, the harder it is to handle. But that would be true for anybody.

I am going to stop here for now. The words aren’t really here yet. Just having a tough time putting words to this today.

For those of you that are Trick or Treating tonight have lots of fun. Be careful please.

Quote of the day:

Only God can move mountains, but faith and prayer can move God.
E. M. Bounds
I really like that quote. Plus, Zach helped me pick it out. So that is special also.

Verse:

Anything is possible if a person believes.
Mark 9:23

Well, as you can tell, the website wasn’t responding earlier. I typed this post at 3:00 pm (Saturday). Then I had to leave to go to a friend’s house and didn’t get back till late.

Friday, October 29, 2004 10:51 AM CDT

Good morning!

I have to start this post out by telling you that today is Bennie’s birthday. So if you have a chance give him a call to tell him happy birthday (243-1212). That will really surprise him and make his day if he gets a bunch of unexpected phone calls. He always jokes that I could get a paper cut and the president would call to check on me. While he could lose a limb and not get a single call. So lets really throw him for a loop….what a hoot that will be!

I don’t think this morning’s post will be very long. I have to run some errands. But I do have something else to ask you to do. You might already do this. If you don’t try it. I love it. A friend of mine told me to put my name in the scripture I read. By doing this we claim it and make it personal. I believe that is the way it was meant to be read. It sure does make a difference when you do it. Give it a try. It will give the word a whole new meaning.

Quote of the day:

True faith is never found alone; it is accompanied by expectation.
C. S. Lewis

Verse:

(your name), Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with God’s people who are in need.
Romans 12:11-12

By the way, send your favorite quotes and/or verses either email to me or leave it on my guest book. Whatever you feel more comfortable with. I am really enjoying the ones I have received so far. Thank you to those of you that have taken the time to do that for me. Your emails and notes on my guest book really brighten my day.

Wednesday, October 27, 2004 4:14 PM CDT

Hey everybody!

I’m back at home. It went pretty smoothly today. I kind of know the routine for this stuff. I had a little bit of fun joking around with anesthesia before hand. Okay, but here is the whine….this doctor sprayed my throat before they gave me some sleepy medicine. Let me just tell you, I hope you don’t ever have to experience that. I have once before years ago. But I actually think this was worse. Then on top of that they gave me some medication to dry up my saliva! I know this doesn’t sound too girlie, and I am a girlie girl as Zach likes to say, but I am just now starting to get my spit back (that’s funny). I tried to eat a bite of bread earlier. You just can’t do it when your mouth is dry as a bone. Okay so back to what the doctor had to say afterwards. He said that these polyps do not appear to go into the wall of my duodenum. This is good. So now I will have to go in to see the doctor that did the upper scope a week and a half ago. After he talks to me he will set up another procedure. This one he will remove these polyps. From now on I will have to be monitored a lot closer to stay on top of this. But I still consider myself blessed to have not had any of these polyps until now. I knew that they would show up eventually, so it wasn’t a huge surprise.

So now on to other things. I’ve had a little bit of a weepy afternoon. Actually I’ve been like this for a couple of days. I talked to my “Soul” sister about this, a lot of people don’t know how to take me. Because they see me out and about and they tell people, “I saw her and she looks so good. She can’t be ill.” These days are better than some days I have gone through in the past. I am thankful for that. But my friend and I both agreed, the way I handle this is to run, to not be still. Because it is when I am still or am made to be still (like after one of these procedures) that it is sometimes more than I can take. For me I would rather be out (I might be able to see one of you) than at home being whiney. Don’t get me wrong there are days when it is all I can do to get up in the morning. But I am a fighter and it is just not in my nature to give in to that.

Okay so here is another little tidbit for you. The other day I saw an interview with a lady that had written a book about being a breast cancer survivor. I think the title of her book is “I wore lipstick to my mastectomy”. I just loved that. It is so me. It made me think about how Zach and Bennie always ask me, “Why do you bother putting makeup on and fixing your hair before you have a procedure done?” My answer to them has always been because it makes me feel better. A girlie girl just has to do that and a southern girlie girl most definitely has to do that. I think it is a rule somewhere…along with not wearing white after Labor Day and so on….ha ha.

Well, that’s all I have for right now. Keep those quotes and verses coming. I love them! They brighten my day so much.

I wanted to add this also. A couple of friends email this to me and I wanted to share it with you. I love it. These will be my quotes of the day.

1. Faith is the ability to not panic.
2. If you worry, you didn’t pray. If you pray, don’t worry.
3. As a child of God, prayer is like calling home every day.
4. Blessed are the flexible, for they shall not be bent out of shape.
5. When we get tangled up in our problems, be still. God wants us to be
still, so He can untangle the knot.
6. Do the math. Count your blessings.
7. God wants spiritual fruit not religious nuts.
8. Dear God: I have a problem. It’s me.
9. Silence is often misinterpreted but never misquoted.
10. Laugh every day; it’s like inner jogging.
11. The most important things in your home are the people.
12. Growing old is inevitable; growing up is optional.
13. There is no key to happiness. The door is always open.
14. A grudge is a heavy thing to carry.
15. He who dies with the most toys is still dead.
16. We do not remember days but moments. Life moves too fast, so enjoy your precious
moments.
17. Nothing is real to you until you experience it, otherwise it’s just hearsay.
18. It is all right to sit on your pity pot every now and again. Just be sure to flush
when you are done.
19. Surviving and living your life successfully requires courage. The goals and dreams
you’re seeking require courage and risk-taking.
20. Be more concerned with your character than your reputation. Your character
is what you really are. While your reputation is merely what others think you are.
~Author Unknown~

I hope you enjoy these. Let me know which one or ones you like the best.

“My grace is sufficient for you, for My power is made perfect in weakness.”
2 Corinthians 12:9

I needed this verse today.

Tuesday, October 26, 2004 9:49 PM CDT

Let me just tell you guys, you are just making my day with all of your quotes and verses that you have been emailing me and posting in my guest book. Keep them coming. I love it! It really brightens my day.

Well, tomorrow is the day for my endoscopic ultrasound. I’ll have to leave my house at 6:45 am in order to be at my oncologist’s office by 7:30/7:45 for my B-12 shot. Then it’s over to the Endoscopy Lab for my procedure. As soon as I know something, of course I will post it. You know I wouldn’t keep you in the dark.

I had something very strange happen to me tonight. I’ll have to let the doctors know about it. My neck swelled up. If I hadn’t already had the mumps, I would have thought that’s what it was. The swelling has gone down some now. For a little while it looked like I had swallowed 2 golf balls! I haven’t been feeling very good, so that probably has something to do with it. Anyway, that was kind of strange. We’ll see what they have to say about that.

Quote of the day:

Ten thousand difficulties do not make me doubt.
John Henry Newman

Verse:

“Have faith in God,” Jesus answered. “I tell you the truth, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in his heart but believes that what he says will happen, it will be done for him.”
Mark 11:22-23

I had to add this part before I close. I was emailing a friend earlier to thank her for words to a song she emailed me. She also mentioned “Footprints in the Sand”. Anyone that spends any time with me has heard me talk about knowing that feeling of “Footprints”. Even tonight as I was typing just briefly about the different times in the past 2 years where I have been so very exhausted and in so much pain that all I could do was pray, it still brings tears to my eyes because the feelings and pain are so real. I have a few stories of being so broken by all of this that I just fell to my knees and cried my heart out and asked to be carried for a while. And you know He has always scooped me right up on His shoulder! I have tears streaming down my cheeks now just typing. This has been and is still very hard to deal with every day. But God is faithful and He loves me. I trust in Him and know He has a purpose for this and me.
Thank you for letting me share with you. These were just rambling thoughts. Pieces of Stephanie.

Monday, October 25, 2004 4:04 PM CDT

Hi.

Today has been an okay day (5 most of day). I’ve been waiting to know what I would post today and it came to me as I was in the car rider line. You know you have to occupy your mind with something while you wait. I usually bring a magazine, book, note cards, and/or a notebook. It’s a good “quiet time”. Anyway, while I was waiting it came to me. I’m going to ask you to do something for me. It won’t take but a minute and it’s painless and easy. Please email me or post in my guest book (whatever you feel more comfortable with) your favorite quote and verse. I just think that will be so great to read from all of you. As you can tell I love quotes and the verses are such a strength for us all. I am looking forward to reading all of your emails or notes. My email address is at the bottom of this page. Feel free to give more than one of each, like I do sometimes. Sometimes it’s just hard to pick only one.

I have to stop here for now to take Zach to basketball practice. I might post more a little later.

Quote of the day:

Prayer is the peace of our spirit.
Jeremy Taylor

Verse:

The peace of God, which transcends all understanding will guard your hearts and your minds in Christ Jesus.
Philippians 4:7

Sunday, October 24, 2004 3:30 PM CDT

Hi everybody!
I hope you all have had a wonderful weekend. Today has surely turned out to be a beautiful day.

Bennie and a friend left early yesterday morning for Minnesota. Talk about a LONG drive. It was like 900 miles! He will be gone until late Tuesday or Wednesday. I was very thankful for their safety of travel. Even though they are there for a funeral I hope that they have a chance to enjoy being with their other friend while they are there.

Well, yesterday and this morning I have to admit I have had quite a tough time. Of course, I have to add here that Bennie, my parents and my best buddy and her family all went out of town. I don’t believe any of them realized that they were all leaving me on the same weekend. When they realize that they will be in a twit. But by then they will also see that everything was just fine. This morning I was having a tough time, just not feeling well. It was everything I could do to get ready for church. But I will tell you this, I look forward to Sunday. If I miss church I am either very sick or in the hospital. Zach and I made it to Sunday school. I’ve posted a lot of times about our Sunday school class and this is another one. As I’ve posted before, our ss class is doing a study on Adversity. This week started the 1st of 6 weeks on prayer. It was a wonderful class. I love the way we all, yes, even me, speak out. When I first got to class I was very quiet, nothing new about that. I have never been one to be very vocal. I am really a shy person. But I truly believe that a part of me going through this is to find my voice and to share with others. Some great points were brought up in our class today. The biggest being how do you answer a person that asks why God hasn’t healed this person or why this person died. Also especially when the person is a child. Of course that hits very close to home for the Crowe house. Zach, my precious boy, is so wonderfully good to me. I pray for God’s comfort, strength, and grace for him. He is just a little boy trying to become a teenager and on top of that has an ill mother. He loves school and basketball because those are his. It is so important for all children to have that, their own space. But back to the question. I had to speak up. I believe that there are blessings and answers everyday to our prayers. Some of them are very small. But I look for the smallest of blessings and answers to prayer; the unexpected phone call, card in the mail, sunshine, rainbow and so on. We have so many blessings everyday. I know a lot of you are praying for healing for me. Please don’t stop. Prayers are being answered. But I know that I am “still in the fire” (from a previous post) and that is okay because I want to be an encouragement to others. God’s grace and love surround me and keep me going.

Well, I have rambled on about stuff for long enough. I am looking out the window as I type and the sunshine is calling me. I think I will go sit on my front porch and just soak it in. You know that’s good vitamin d and I am vitamin d deficient…ha ha.
Go enjoy the sunshine and hug your family.

Quote of the day:

Faith is taking a step into the darkness and believing that either there will be something solid to step on or you were born to fly.
Unknown
(A wonderful, sweet friend posted this to me on my guest book. I had to share it today.)

Verse:

Now faith is being sure of what we hope for and certain of what we do not see.
Hebrews 11:1

I just have to add that the verse and quote are always something that I just know I am suppose to use. I have to tell you that because the verse, I just saw Hebrews 11:1 on the side of a lady’s computer after my oncologist appointment. I thought, that’s my verse for this weekend. Didn’t have a clue, but just knew. Then my friend posted that quote and I knew that was the quote. I had no clue how they would go together. But that is how it always works out. That’s why I won’t force the words, if they aren’t there.

Don’t forget to check out my guest book.

Friday, October 22, 2004 5:09 PM CDT

Good morning everyone!
I hope you are all having a wonderful Friday.

I have already told a few of you this next part, but now it’s time to spread it farther. I have decided (told Bennie after the “No Growth”) that when I actually hear the words shrinkage we are all going to party. Huge party! So get your party shoes ready. My next scan is in January…let’s get our praying power together…and then celebrate…shrinkage.

I don’t really have much to post right now. But you know there may be another post later. Maybe a story, you never know. Anyway, update for next week. I have to get back into physical therapy. I am really struggling with that. That is so not me. Then I have another full day at Vandy on Wednesday. I have to be there at 7:30 to get a B-12 injection. Then on to the Endo/GI Lab for my hydrocortisone iv and the endoscopes ultrasound. The nurse I talked to said that it would take at least an hour to do this scope. On this one they will actually put me to sleep. So I am expecting my throat to feel yucky afterwards. But that is all part of it. I just want to find out what the deal is with my ampulla and what treatment I need. Also, I have spoken to 2 of my doctors about the needle aspiration of the air collection in my abdomen. I’m not sure when I will have that done. The sooner the better as far as I am concerned. They are going to try to stick a needle into this abscess to draw the air out. It is possible that I will have to come home with a drain. But I’ve been there before. It’s definitely not my choice of fashion accessories, but if it can help me out with some of this pain then I am willing to carry it around.

Anyway, I wish you all a wonderful Fall weekend!

Quote of the morning:

Faith is nothing more or less than actively trusting God.
Catherine Marshall

Verse:

The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living.
Hebrews 11:1

Please check out my guest book. Surprise me with a note. Give me some ideas about the party we are going to have…just whatever.

Well, as you can see the website has not been responding until just now at 5:00. I might try to post again in a little bit.

Thursday, October 21, 2004 7:16 AM CDT

I’m back……and the results are in……

Our prayers were answered……

NO GROWTH!!!!!!!!!!

Basically everything is the same. No shrinkage just yet. But when the time is right I know we will see that. So, I will get to continue with this chemo for another 3 months. In January I will have another CT of the neck, abdomen and pelvis. I also had to have blood work drawn today, still waiting for those results. But he already put an order in for them to give me a B-12 shot next Wednesday before my procedure. The results from my blood work on Friday are in too…vitamin D deficient. So the doctor prescribed a high dose vitamin D that I take for 21 days. Then I have to go back in to have it checked again.

You know I just have to stop right here and say…

Thank you God for all the answered prayers in the last few days. Some you know about, some you don’t. So here are a few of the ones I’m talking about…

1. NO GROWTH!!!!!!!!!!

2. Tests and doctor appointment went smoothly.

3. This is another one for the doctor. Going through this kind of stuff really works on a person. Every so often I go through a cycle where I don’t want to deal with the doctors. I feel like the problem patient. One of my doctors told me that I am a patient with a chronic illness, there is a difference. So today’s appointment was an answer to prayer. I didn’t walk away feeling frustrated. He didn’t make me feel rushed and answered all my questions. And again….No Growth!!!!!!

4. My wonderful friends and family that are so excited with the results. Thank you for your phone calls and your enthusiasm.

Now I am going to post some funnies for you to have a giggle or two about. Well, my MRI was scheduled this morning for 7 am. Which meant I needed to be there by 6:50 am. Which meant I had to leave my house at 6 am. My CT scan was scheduled for 8:40 am. Which meant that while I was in traffic at 6:30 I had to down my first bottle of contrast. You know that refreshingly delicious morning drink. Let me just tell you. There is some so wrong about having to down this concoction, while in a traffic jam, on my way for tests were I am going to be stuck numerous times. That’s just not right on so many different levels…ha ha.
But I will say this, thank you Jesus….I didn’t have to drink the gastro graf. Now that stuff is pure nasty…the absolute worst. Another answered prayer right there, right? Yes.

Anyway, so when I got there, it’s funny because I walked in and the girl that works there said, “What are you doing here Stephanie? I saw your name on the schedule.” I told her that I just couldn’t get enough of the place so I decided to get the party started early and to make a day of it. We laughed and then it was time…not only for the MRI but also….yes, you guessed it…to down another deliciously refreshing bottle of contrast.

Right here I am going to tell you I use to think that having an MRI was easier than a CT scan. But you know what? I have decided that it’s 6 one way, half a dozen the other. Because with a MRI, true you don’t have to drink all the nasty stuff. But you still usually get stuck for an iv. You have to lay still in a very small, noisy tunnel for an hour. With a CT scan true, you do have to drink the nasty stuff and get stuck for an iv. But it usually only takes about 15 minutes. I think I vote for the CT. Plus, my doctors agree that CTs give them a better view on things. So, that’s fine with me.

Anyway, that is the news for today. Thank you for all your prayers. They are being answered.

Quote of the afternoon:

We must learn to wait. There is grace supplied to the one who waits.
Mrs. Charles E. Cowman

Verse:

But those who wait in the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not be faint.
Isaiah 40:31

Wednesday, October 20, 2004 6:17 AM CDT

Hi.

I am on my way out the door this morning. I have to be at Vandy for my MRI at 7:00 am, CT scan at 8:40, and then see the oncologist at 11:15. So it will be a full day of Vandy. Because by the time you factor in the waits at each appointment and then the time for the appointment it will be a day. But hopefully by the end of today I will have some good news to tell you. I am praying for the tumors to show no growth or even better…shrinkage. Either one will be good news in my book.

I hope you all have a great day! J

Quote of the day:

Patience means waiting for God faithfully, hopefully, and prayerfully. But patience also means being willing to accept God’s timetable, not our own.
Marie T. Freeman

Verse:

I trust in You, I say, “You are my God.” My times are in Your hand.
Psalm 31:14-15

Tuesday, October 19, 2004 2:29 PM CDT

Good afternoon!
I have a few words now. Earlier there were none. But this is just another example of God’s love and grace. I am so very richly blessed and surrounded by such loving family and friends. I never fully reach that bottom because of the blessings in my life of all of you. Thank you for the phone calls just to check, the cards and notes in the mail, the emails and notes in my guest book. Each and every one of those are such a boost and encouragement to me. More than you know.
I am blessed. Thank you.

Quote of the day:

Faith does not struggle; faith lets God do it all.
Corrie ten Boom

Verse:

Draw near to God, and He will draw near to you.
James 4:8

Monday, October 18, 2004 11:54 PM CDT

No words...

I hold firmly today to these verses...

Psalms 23, 91, & 121
Psalms 18:1-6 & 30-32

And this prayer...

I know that I am a child of God. I am saved. I have been placed into Christ. I am sealed with the Holy Spirit. My eternal destiny is determined, and nothing can change that. The Lord will never leave me or forsake me. The angel of the Lord emcampeth round about me. Nothing can touch me apart from what my loving heavenly Father allows. All things will work together for my good since I love God and have been called according to His purpose in Christ Jesus. Amen.

Sunday, October 17, 2004 8:38 PM CDT

Hi everybody! I am back! Of course, some of you already know that because I saw you at church this morning. Zach and I had a great time with my parents. Like always the time just flies by. But it was good to get back home also.

On our way to my parent’s house, Zach and I had to make the pit stop by one of my doctors. The verdict from him was that I have an ear infection and an upper respiratory infection. So I have an antibiotic (you know I just love taking more medicine…) plus I have to increase my hydrocortisone to 3 times a day for the next 3 days. Then take it twice a day for the next 3 days after that. Then if I am feeling better I can go back to once a day. He also told me that for the scopes I had done last week I should have been given an iv dose of hydrocortisone an hour before they did the procedures. Luckily everything went smoothly. But he did say that he would email the doctor that is going to do my endoscopic ultrasound to let him know he should do that for me before he starts. Which, by the way, I am having done a week from this Wednesday. For this scope they will actually put me to sleep, no little bit of Demerol and versed for this one. Also this scope will take an hour to do. So I am expecting that my throat will be pretty sore afterwards. This coming Wednesday I go for my MRI of my neck, CT scan of my abdomen and pelvis, and then to see my oncologist. Hopefully, the tumors will either be stable still or have shrunk. Either one I will consider good news and answer to prayer. If any of these tumors have grown I am fairly sure the doctor will want to start discussing changing my chemo. It is my prayer that we don’t have to talk about that. Because the next two types of chemo are more toxic and have pretty bad side effects. So, we just aren’t going there.

I don’t know if any of you watched 48 Hours last night. We did. It was kind of eerie because they were doing a story on “The Murder of Stephanie Crowe”. I had heard about this. She was a young girl that was murdered in her home. Parts of it were very strange to sit there and watch. Especially the funeral scene that showed the coffin and said her (my) name. Zach said that it “weirded him out”. A couple of times I got chill bumps. Kind of strange to watch and listen to that. I actually had a few phone calls when they were showing the previews during the week. Because people would just catch my name and then 48 Hours. Nothing to do with me though.

Well, I am going to stop here for now. I have some catching up to do around the house. You know the “clean up” fairies just forgot all about my house while I was gone….ha ha.

I have a few quotes and verses for today. I just couldn’t pick one of each. When that happens I just go with it. I figure there must be a reason for it. Plus, I guess it catches us up since I have been out of pocket a few days. I hope you enjoy them. Email me or leave a note on my guest book. Let me know. Also, I’m working on some stories for you. I hope you have a wonderful Sunday afternoon!!!!!!!

Quotes for today:

God walks with us . He scoops us up in His arms or simply sits with us in silent strength until we cannot avoid the awesome recognition that yes, even now, He is here.
Gloria Gaither

&

I have come to recognize that He never asks us to do anything He has not already done. He never takes us anyplace where He has not been ahead of us. What He is after is not performance but a relationship with us.
Gloria Gaither

Verses:

Show me your ways, O Lord, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.
Psalms 25:4-5

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
Roman 8:18

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28

Okay, okay, I said I was done but something else just popped out. Everyday I try to live my life as a positive. Because I know that there are people that are watching or people that may see what my family and I are going through. So it is very important to me to be that positive influence in everything I do. You never know how you can change a person’s life. This next part is just proof of others watching and seeing what is going on in your life. This makes us all very accountable. That is how I look at it. But anyway, I have a very dear, sweet friend whose children pray for me every single day. We don’t get to see each other a lot. Also we go to different churches. But today one of her children spent the night with a friend and came to my church. When she saw me in the sanctuary before church she hugged me. Then she said to the friend’s mother, “Ms. Stephanie goes to church here.” We should all be so excited about the people and things we pray for as this little girl. I am just an ordinary girl, but this little girl and her family, along with all of you make it a point to remember me and my family in your prayers. That humbles me and brings tears to my eyes just the blessing and thoughtfulness of that. Thank you more than words can ever express.

I love you!

Friday, October 15, 2004 7:21 AM CDT

(This post is actually from yesterday. But the website was not responding until this morning.)

Hey everybody!

Today has been a little bit busy. Bennie, Zach and I went to our dear friend’s funeral today. It was a beautiful service for such a special man. It was great to see so many friends there, some that we hadn’t seen in a while. Before I type my next words I want you to please understand that I in no way am giving up nor do I want to give that impression. In the service today I got the most wonderful calm. The thought that came to my mind was, everything will be okay. No matter how this turns out I am going to be okay. This is a important journey and I am blessed. In the service my brother-in-law, who is a pastor, read Psalms 116 kind of as a tribute to our friend. It is a beautiful chapter. If you have a chance you should read it. All of us should strive to touch as many lives as this man did. As we were driving home I asked Zach what he was going to do when we got home. He said that he was going to rest and try not to think about how much he was going to miss Brother Mack. I reminded him about what his grand-daughter had told us about seeing his face and knowing he was seeing heaven. That made Zach smile. Then I said just think about Granny and Papa, who passed away a few years ago. Now they know Brother Mack. He started laughing and telling what he thought they were doing. This I believe was a huge comfort to him. To us sometimes death seems like the end, but in truth it is only the magnificent beginning.

Oh, a little bit of news on the medical front. I received a call and a letter from the doctor about my upper scopes. He wants to schedule an endoscopic ultrasound so that he can better see what is going on with my ampulla. All of the biopsies came back as tubular adenomas. These type of adenomas are the pre-cancerous type. So I will definitely have to have closer surveillance of this area. Until this point this area has always been clear. But it was only a matter of time with this syndrome. I am very fortunate to have been clear until now. This is just another part of the journey.

Tomorrow Zach and I are going to spend the night at my parent’s house. You know, it’s just great to be able to go there and just hang out, just veg. My mother and I really are attached at the hip, as Bennie likes to say. We always say after we have been together that the time went by too fast. My parents are the best and I would be lost without them. They are an incredible strength and comfort. I am blessed. Well, I told you all about that just in case I don’t post tomorrow. I don’t want anyone to worry. And boy does the phone ring if I don’t let someone know. I love you guys, too. Thank you for caring so much!!

Quote of the day:

Put your hand into the hand of God. He gives the calmness and serenity of heart and soul.
Mrs. Charles E. Cowman

Verses of the day:

I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live.
The Lord is gracious and righteous; our God is full of compassion. The Lord protects the simple hearted; when I was in great need, he saved me.
Psalms 116: 1,2,5, & 6

Please check out my guest book. Your notes are such an encouragement to me. Thank you so much!

Okay, so this is an addition.
I have been trying to post all evening. But once again the website isn’t responding. I was getting a little frustrated. So, I decided to do something else for a little while and then try again later. Well, do you know more words just flowed. So here is the addition. I am typing as fast as I can to get them down.

Some wonderful friends sent me a surprise that I received today. They burned a song for me on a cd. The song is called “God Is Watching Over You” by The Newsboys. It’s a great song.

The chorus goes….

God is watching over you as always
You are loved whatever you go through
He’s right beside you
God is watching over you as always
And if you think He’ll ever leave you
You’d better think again

Thanks for thinking about me! Love you. The song is really cool. I was going to type all of the lyrics for you but thought it might be too much.

I have to tell you how very blessed I am. Everyday God blesses me. Some people have asked me…have you ever wondered why you are going through this? How do you stay so positive? Do you get down?
These are my answers.
No, I can honestly say that I have not ever wondered why me. I have always known this was my journey. The journey is just more clear now. There is a purpose. I have a positive attitude because that’s just how God made me. It’s just that simple. Plus on top of that, like I said before God blesses me everyday…with a wonderful family, fantastic friends, your notes and calls, little surprises in the mail, double rainbows, and so on. There are blessings in everyday.

Okay this is absolutely it now for today! I hope you all have a wonderful night. I have necklaces to make now.

Wednesday, October 13, 2004 12:55 AM CDT

Hi.
I wanted to share with you some stuff that happened yesterday. This is really cool. I got two phone calls, one as I was leaving for the Cancer Answer evening (from my mother) and one as I was walking out of the parking garage (from a friend). I’m telling you about these phone calls because they both called to tell me the same thing…they were looking at the most beautiful, brilliant double rainbow! They said that they had to call me to let me know. I just love that. Then I went to the meeting. It was great to meet some of the people I have spoken with over the last few years. I got to meet a lady that actually remember me from when I did the PR for the “Face The FAP” campaign. That was a campaign to promote awareness of hereditary colon cancer. I actually did commercials for this. It was great to be able to be a part of this. I am looking forward to being able to do more in this area. That is my mission, to be a positive in this fight for hereditary cancers. The women I spoke to last night are going to call me about some meetings they want me to speak at. I am very excited about this. I told them that I consider all that I have been through worth it, if I am able to help at least one other person. I told them that I had been through every possible complication and then some. I had had to experience some aspects of this syndrome that I had hoped never to have to deal with. But I told them that by going through those situations I learned that it wasn’t that bad and that I really want to be able to help others that probably had the same feelings about some of that. I haven’t spoken openly about some of the things I experienced. But I feel now is the time to start opening up in order to help others. One of the things I had to deal with was an ileostomy. I had to have one after my first surgery (Jan. 2003) due to the first of many complications. I developed a leak in the new j pouch just days after surgery, which lead to emergency surgery and my ileostomy. Every since I had the very first surgery, just a few months before I turned fifteen, I have always thought that if I kept up with my follow up I wouldn’t have to have that horrible thing. That is the way I thought of it. Of course, there was a person in my life that painted a very terrible picture of it. That if you had one life was basically over. Well, I am here to tell you that is definitely not true. Before the surgery in January I had to be marked for possible stoma sites, just in case this happened. I remember when the nurse was marking me I told her that it was fine for her to mark me, but that I wasn’t going to need those marks. I was still holding on to not having to deal with that. But that isn’t how it went. When I had to have the emergency surgery I was so deathly sick that I didn’t really care what they did to me. To tell you the truth the two weeks that I ended up in the hospital are for the most part a black hole for me. I was so incredibly sick that I don’t remember much, just pieces here and there. But that is a post for another day. Back to the ileostomy. At first I was very scared. But I had a wonderful support group around me, Bennie and my mother. I couldn’t have accepted and recovered from that the way I did without them. I have to brag on Bennie here. He is the best in this world. I have told him many times that any other man would have run screaming a long time ago. He has been the best. This is a little funny for you. I know Bennie is as excited as I am about the discovery of the nausea patch. Because before we found that I always got deathly sick after I was put to sleep. Every time he came in to see me in recovery, I don’t know how I always did it, but I always ended up throwing up on his shoes! But thankfully that doesn’t happen anymore with this patch. His shoes are safe now. But back to how very blessed I am. Bennie and my mother were there for me. They knew how scared I was. In the beginning they help me until I got a routine down with all of this. At this same time I ended up with an open wound also. That in itself is another whole post. Boy, the stories are just flowing out today. I can’t tell you about them all right now because the post would be too long. But that just leaves something for later. But I have to say that most people didn’t know that I had this at the time, unless I told them. I ended up having to have the ileostomy for six months due to other complications; open wound, malnourished, sepsis, MRSA and so on. Most patients only have their ostomy for six to eight weeks. But it was a learning experience for me. I am no longer afraid of that. Because with this syndrome there is always the possibility that I will have to have it again in the future. It doesn’t make your life any less. I actually was a little afraid when it was time for what they call the takedown. I had become use to my routine. But I am happy today that my takedown was successful. Okay I have rambled on long enough. Go have a wonderful afternoon. I have to stop here to take Zach to basketball practice.

By the way, I went to medical records before the meeting last night. I have my pathology report. Now I am just waiting for the doctors to call me about how we are going to handle this. It will most likely just mean closer surveillance of these areas. But I will post as soon as I know something.

Quote of the day:

Faith means believing in realities that go beyond sense and sight. It is the awareness of unseen divine realities all around you.
Joni Eareckson Tada

Verse:

Blessed are those whose strength is in you, who have set their hearts on pilgrimage.
Psalm 84:5

Don’t forget my guest book.

Tuesday, October 12, 2004 10:32 AM CDT

Good morning!

I hope you are all having a good Tuesday, even though it is wet outside. It’s wet here in Nashville.
I am still waiting to hear the results of my biopsies from last Thursday. Hopefully I will get that phone call today.
I really don’t have a lot to post this morning. The words haven’t really come to me yet. I’m just kind of giving a few thoughts maybe I’ll have more later.

I do want to ask you to say a prayer for some dear friends of ours. We went to church with them for years. This morning Brother Mack passed away. He was like a grandfather to all of us. You will never meet a more Godly man. So we can surely rest in the fact that he is in glory this morning. It is definitely a loss for us, but a joy for heaven. Please remember his family in their time of grief.

Tonight I am planning on going to “Cancer Answer Evening - Hereditary Cancers” at Vanderbilt. Vanderbilt does these evenings every so often. There is a different topic each time. I have an interest in this one for a couple of reasons. The first one is because I have a hereditary cancer syndrome. The other reason is because Susie Caro is the speaker. I have spoken to Susie quite a few times over the last 20 months. But we have never met. We have tried to a couple of times but it didn’t work out. So I am looking forward to meeting her tonight.

Well, that’s really all I have for now. Have a wonderful day!!!!!

Quote of the day:

Faith does not concern itself with the entire journey. One step is enough.
Mrs. Charles E. Cowman

Verse:

Let us hold unswervingly to the hope we profess, for he who promised is faithful.
Hebrews 10:23

Please check out my guest book. Leave me a note and brighten my day. Your notes are treasures to me.

Okay for those of you that persist……5 almost a 6 this morning.

Monday, October 11, 2004 9:39 AM CDT

This is Sunday's post. The website was not responding until just now. I will post again later today. Have a wonderful Monday!

Sunday, October 10, 2004 3:11 PM CDT
Hi everybody!
I hope you are all enjoying your Sunday afternoon. You know I look forward to Sunday because it is such a huge comfort to me to be with my church family. It feels like we have been a part of CRBC forever. We are so blessed.

For today's post I want to share something a sweet friend of mine sent to me. So that is what the following is.

Stephanie,
I read this today and thought about you! I know that God is almost ready to bring you out of the fire! I'm still praying for His miraculous healing!
Love,
L.

Malachi 3:3 says: And he shall sit as a refiner and purifier of silver.

This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God.

One of the women offered to find out the process of refining silver and get back to the group at their next Bible study.

That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver.

As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were the hottest as to burn away all the impurities.

The woman thought about God holding us in such a hot spot then she thought again about the verse that says: And he shall sit as a refiner and purifier of silver.

She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined.

The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy - when I see my image in it."

If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image in you.

Pass this on to everyone you know. This very moment, someone needs to know that God is watching over them. And, whatever they're going through, they'll be a better person in the end.

"Life is a coin. You can spend it any way you wish, but you can only spend it once."

I carry that story with me. It still brings tears to my eyes when I read it. Some people ask, how can I have such a positive attitude? Or how do I continue to smile through all of this and through the pain? With all the wonderful friends and family and support that God has blessed me with how could I not have a smile and a positve attitude? Plus, like I said in Sunday school today...God doesn't make mistakes. All of this is for a purpose and reason. Some of you may think this is crazy, but the way I look at this is that God believes in me. Remember He doesn't give us more than we can handle (of course, with His love and help). So, I am honored to be on this journey. Now that is not to say that I don't experience the ups and downs of this. I do. But with God's help and my wonderful network of friends and family I am able to move forward.

Quote of the day:

We look for visions of heaven, but we never dream that, all the time, God is in the commonplace things and people around us.
Oswald Chambers

I am not alone, because the Father is with me.
John 16:32

Don't forget to check out my guest book. Thanks. Hope you have a wonderful week!

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Monday, October 11, 2004 9:37 AM CDT

Hi everyone. I have been trying to post without much luck. The website is not responding. Check back later.

Saturday, October 9, 2004 9:10 AM CDT

I want to start this post by saying...

HAPPY BIRTHDAY to my Mother!!!! Today is her birthday and I am so thankful for her.

The rest of this post is what I tried to enter last night. But the site was not responding. So I am hoping it will this morning.

I wasn't sure if I would post today or not. I wasn't sure for a lot of different reasons. The first reason was because I'm not feeling too perky after yesterday. Plus I have had a rough time with pain today (anywhere from a 6 to a strong 8). Bennie talked to one of my doctors yesterday about my pain patch. They decided that I should cut the patch in half to see if I could tolerate it better. This morning I had promised Bennie and a friend of mine that I would do that. I wasn't real excited about the chance of getting sick again. But I cut the patch and applied it to my back. Of course when I cut it, it did exactly what I thought it would do...the center started seeping out. So I used some of my handy dandy surgical tape to tape the cut side to my back. But something about it just didn't sit right with me. So I called the pharmacist to ask questions. She said that their instructions read that you can't cut the patch. She gave me the 800 number to the pharmaceutical company that manufactures this patch. The lady I spoke to said, "Absolutely not. It can cause death if the gel gets on the skin. This is a time released patch for a reason. You need to remove the patch now. Make sure you clean the skin throughly where the patch was." Then I realized why I didn't feel right about cutting the patch. Just had a nagging feeling. The instructions I had about how to apply the patch read to wash your hands throughly after applying the patch. It also instructs to flush the used patch. Do not throw it in the trash. Anyway, I had the patch on for about 25 minutes. So I am back to square one in regard to pain until my pain management appointment next month.

I talked to the doctor about my bone density test today. He said that my lower lumbar T score and Z score were slightly lower than most people my age. My hip area scores were slightly lower than that. But he isn't overly concerned at this point. He said that I have a few risk factors that are the cause of this: 1. being female 2. total hysterectomy 3. hydrocortisone 4. tamoxifen. He wants to do another scan in nine months, sooner if any of my medicines change. For now he told me to take a calcium/vitamin D twice a day and to make sure I have a couple of servings of calcium also. So that was pretty good news.

I spent most of the day not feeling good and birthing puppies...yes, I said puppies. I actually just played midwife to Pituca, our boxer. She ended up having 8 puppies. Seven puppies made it. They are so sweet. But it was kind of stressful at times. I was by myself. But we made it through. Glad that's over with now though.

I'm going to stop here for now. I'm still working on feeling better. Some days the pain is just a little harder to cope with. Today has been one of those days. But I'm looking forward to a better tomorrow.

Quote of the day:

I choose gentleness. Nothing is won by force. I choose to be gentle. If I raise my voice, may it be only in praise. If I clench my fist, may it be only in prayer. If I make a demand, may it be only of myself.
Max Lucado

Verse:

The wisdom that is from above is first pure, then peaceable, gentle, and easy to be entreated, full of mercy and good fruits, without partiality, and without hypocrisy.
James 3:17

I hope you all have a wonderful weekend!

This is an addition this morning...

I want to say thanks so much to my girlfriends that took me out last night. You are the BEST!!!! You really picked up my spirits. You girls are always so great about that. What would I do without you? I don't want to know. The laughs were such good medicine. I love you girls.

Thursday, October 7, 2004 4:40 PM CDT

I'm home!
I have actually been home for a few hours. The procedures took a couple of hours. Bennie loves to laugh at me (it is funny) because of the medicine they give me. They gave me demerol and versed. Versed is an amnesia type drug. So when I made it back to recovery and woke up enough to know Bennie was there I did my usual thing...started asking questions. Well, that is all fine and good except for the fact that I end up asking him the same questions over and over because I can't remember that I have already ask. But my head has cleared up now. I asked him to tell ne just one more time what the doctors told him so I could post. That is the only thing I don't like about having to have the versed, I don't get to talk to the doctors and if I did I wouldn't remember.
Anyway, when they took me back I got to meet both my nurses. Yes, I had two. Because the upper scope was done in one room and the lower was done across the hall. Of course, I don't remember any of it, which is good. I have been awake for these before and it is not fun. The doctor came in and talked to me a few minutes and then said that he was going to give me a little push of medicine to calm me. Well, let me just tell you, I felt it go in, a little burning sensation in my chest. I can remember he ask me one or two more questions and I could feel myself falling asleep. The next thing I know I am in recovery.
So, I know you are all waiting to read what the doctors said. The lower scope went fine. The pouch looks good and no sign of any polyps. YEA!!!!!! That is a blessing.
The doctor that did the upper scope said that I had a polyp in my duodenum and my Ampulla of Vater was enlarged. He took a biopsy of both to have sent to pathology. We should know something next week, maybe on Monday.
I know some of you are saying what in the world are the duodenum and the Ampulla of Vater. I will try to explain them to you. The duodenum is a hollow jointed tube that connects the stomach to the jejunum, which is the first part of the small intestines. The Ampulla of Vater is the part of the duodenum where the common bile duct empties into the second part of the duodenum. So now you know, in case you are ever asked that on "Who Wants To Be A Millionaire".
So, now I am just resting and getting over the scopes. For the most part I just know that I have been "invaded". Believe it or not the lower scope isn't too bad. But I guess since I have had them done since I was eight years old it's kind of old hat. But the upper scope bothers me a little more. So if you talk to me in the next day or two you might notice I sound a little strange. It's just from the scopes. It makes my throat real sore. But I am thankful to have that over with. I have been very lucky so far because my upper digestive tract has always been clear. I have just had to have the upper scope done every two years. But after today that will changed to a shorter time. I will have to have this followed a little more closely.

But that is enough about that. Today was another glorious day! Tomorrow is Friday and begins Fall break for Zach. I am looking forward to having some fun with him next week.

Quote of the day:

Faith sees the invisible, believes the unbelievable, and receives the impossible.
Corrie ten Boom

Verse:

Let us hold on to the confession of our hope without wavering, for He who promised is faithful.
Hebrews 10:23
Amen

Wednesday, October 6, 2004 3:18 PM CDT

Just wanted to let you know that I added more to this post at the bottom. This addition was added at 5:00 pm.

Good afternoon!
This is the second post for today. I always try to make sure I let you know that in case you missed the first one you know to check the past entries to catch up.

God has laid it on my heart to share some praises with you this afternoon. It is just as important to share the praises as it is the prayer requests. A lot of times these praises are what fortify our prayers. They also assure us that our prayers do make a difference. The following are some answers to prayer that I wanted to share with you.
I have been praying for a young man that one of my sisters-in-love has become acquainted with at her job. He is a patient at Vanderbilt Children's Hospital. From the moment she first told me about him I just knew I had to pray for this young man. Prayers have and are being answered for him. He just recently celebrated his 18th birthday. That in itself is a huge praise for him.
I have praises to share about me also today. Last night I actually slept for 4 hours in a row! That is big for me. Today I will also say that it hasn't been bad at all being on my clear liquid diet. That is a blessing.
Then of course, I want to express praise for the glorious sunshine that we have enjoyed today. What a beautiful day it has been!

I also felt encouraged to post my thoughts about being on my clear liquid diet today. We all know, for the most part, how practically everything we do socially involves food. You are never more aware of this until you are not allowed to participate in that aspect of our social lives. It becomes blatantly obvious. But I have to say again here that prayers have been answered. Because I have not had to struggle with hunger or even thinking about food today. In the past when I was on TPN it was different. For those of you that don't know about that I'll catch you up real quick. I have had to be placed on TPN (nutritional iv) 3 times in the past 20 months. The last time was the toughest because I wasn't allowed to eat or drink anything for 6 weeks. After the first week my doctor agreed I could drink 8 oz. of water or unsweet tea a day. That helped a little bit. Those 8 oz. were like gold to me. But everywhere I turned there seemed to be something to do with the one thing I wasn't allowed. Needless to say, it was a very trying time. So, I am very thankful today that things are going smoothly. Also I know that it is for only a brief time with an end in sight. I will admit...okay here is the whiney part...I am NOT looking forward to drinking that green drink at 6:00. So, if you think about it would you please send up a prayer around that time. That's the end of the whine. It's out of my system.

I am going to stop here for now. But I do want to add that I have gotten into the habit of carrying pen and paper wherever I go now. Because I never know when the words are going to be there. It's just amazing how it happens. It always puts a smile on my face when it does. It's just really neat.

I have to add one more thing. I have said this before, but it's so very important. Thank you to everyone of you that visit my website. Thank you for your prayers and notes. That little bit of time that you give is an incredible strength to me. For that I am forever thankful and blessed. God bless you all!

Quotes for this afternoon:

Two wings are necessary to lift our souls toward God: prayer and praise. Prayer asks. Praise accepts the answer.
Mrs. Charles E. Cowman

God is worthy of our praise and is pleased when we come before Him with thanksgiving.
Shirley Dobson

Verses:

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things. Whatever you have learned or received or heard from me, or seen in me, - put it into practice. And the God of peace will be with you.
Philippians 4:8-9

This is the addition.

Zach and I have been listening to a song on a new cd we have. The name of the song is "This Is Your Life" by Switchfoot.
The chorus is: This is your life, are you who you want to be? This is your life, are you who you want to be? This is your life, is it everything you dreamed that it would be when the world was younger, and you had everything to lose?

I have thought about that chorus for the past couple of days. It encourages me to make everyday that I am given better than yesterday. The last part, is it everything you dreamed, I can answer yes. When I think about my life right now I can honestly tell you that it is everything I dreamed of. I couldn't ask for more. So to me everything else is a bonus. God has blessed me with pure joy and happiness. All of you are a huge part of that. Thank you!

I promise that is all I will post for today. I will try to post in the morning before I go in for my day at Vanderbilt. No promises though.

Wednesday, October 6, 2004 7:47 AM CDT

Well, I tried to post this last night before I went to bed. But after I got it all typed up the website was not responding. So I've got my fingers crossed that it will go smoothly this morning.

Last night I went to a gathering for MOMs in Touch. Seven of us went from Kingston Springs. It was a wonderful time of fellowship for all of us. The superintendent of Metro schools spoke briefly. It was nice to actually see and hear him in person. There was also music and a wonderful speaker. They had three baskets to give away at the end and do you know the friend that drove us won one of them. Of course, we told her she needed to share the prize. My friends decided before we left that they would have prayer together for me and my family. I am truly blessed to have these wonderful women in my life. They are such an incredible strength to me. After they prayed, the driver said that she wanted to read something to us. I don't know what everyone else was thinking. But I figured maybe it was something she had found in the basket she wanted to share. The following is what she read to us...

The world would be a better place if...

The world would be a better place if you could reach out to the people that are not christians. It would be awesome if we could get people to believe and stop going to Hell and start going to Heaven. It would be cool if everyone went to church every Sunday and not just on Christmas and Easter. It would be great if we could have a little time set aside for Jesus and the bible at school instead of the big bang theory. I would love for school to have a prayer before the lunch break. I wish that we could talk freely about God at school and not offend anyone. I would be so happy if the Godly people could go and reach all the stubborn people in the world. I would hope people's schedule wasn't too busy to read the bible before they went to bed. I wish people would pray before they went to bed. I wish people could come to see that the absolute truth is in a simple book called the bible. I know people can feel God working around them, but some can't and I know that we can help them. I hope in the future there will be more than 20% of all the christians going and being missionaries. I wish that when someone has a decision to make they would ask, "What would Jesus do?" and get the right answer. I think that the christian role models help people if they listen. I wish people would accept their physical bodies because God made you to do something special. I hope people will see the broader picture instead of what is right in front of them. I wish people would understand this verse in the bible and know what it is saying..."For God so loved the world, He gave His only begotten son for who shall believeth in Him will not perish, but have everlasting life." John 3:16. This is the last thing I am going to say for now, but it is probably the most important. I wish with all my heart that people would believe.

When she finished reading this some of us had tears in our eyes and we were all quiet. Then she told us who had written it...Zach Crowe...my Zach! When she said his name my breathe just stopped. He had told me last week that he had written something for a classroom assignment and that he would get me a copy of it. But I had no idea what it was about. When I got home I read it to Bennie. While I was reading it Zach came in the room. When I finished we both told him how very proud we are of him. I just wanted to share that with you all. Thoughts of a 12 - almost 13 year old. Our children are our future.

Oh, and to the gang that went last night...thank you so much for the laughs. I enjoyed the time we had together.

Quote for the morning:

Knowledge stamped on the heart makes one wise.
Beth Moore

Verse:

Wisdom is a tree to those who embrace her; happy are those who hold her tightly.
Proverbs 3:18

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I'm praying that you all have a fantastic Wednesday!

Tuesday, October 5, 2004 3:24 PM CDT

Good afternoon everybody!

Isn't today an absolutely beautiful day? I unexpectantly got to spend the day with Zach. I had to take him to the doctor. But I already kind of knew what was up. He's had this before, about two years ago. He's got Fifth Disease once again. The funny thing is that by the time you know someone has it they aren't contagious anymore. So, he went to physical therapy with me. We've gotten to enjoy each other today. We both needed that.

I haven't heard from my new doctor about the bone density results yet. Tomorrow I start my clear liquids for the day to get ready for my scopes on Thursday. Then at 6:00 pm I get to drink my deliciously refreshing green drink. (I say that very facetiously.) After that it's NPO until after the scopes. I am scheduled for 9:30 am on Thursday. It will probably take most of the day between doing the scopes and then recovery. I will be glad to get those over with.

That's really all I have for now. I am looking out the window in my office. The sun shining through the trees and the slightest breeze blowing the branches is such a beautiful, peaceful sight. It is very calming to my soul. What a blessing.

Quote for the day:

God uses our most stumbling, faltering faith-steps as the open door to His doing for us "more than we ask or think."
Catherine Marshall

Verse:

Anything is possible if a person believes.
Mark 9:23

Monday, October 4, 2004 4:57 PM CDT

I have made it back home. Boy am I glad. It has been a busy, hectic day. This morning I went to see a new doctor that specializes in osteopenia. I knew that I would be pushing it if he was running behind. Lets just think about that statement for about two seconds; a medical doctor's office and running behind. I don't normally mind that at all because the way I look at it is that doctor is taking time with his patients. But then there is also the patient that runs late, which throws the schedule off. I was trying very hard today not to cause Zach to be one of those patients today. Because today, you know was "The Day". He got his braces. Of course he goes to "The Best" orthodontist ever. I can say that not only as a mom whose child has braces, but also as a former employee of this particular orthodontist. So I know both sides. When we first left the office Zach wasn't real sure about the whole braces thing. He has looked and looked at his new smile. He just now told me that he thinks he's getting use to the way his teeth look. Right after that he asked for another advil. He's just a little bit sore. But that's to be expected.

Okay, so back to my doctor visit this morning. The new doctor was okay, fairly nice. My surgeon says that he trust my judgement of doctors because I am a connoisseur of doctors at this point. I guess I should be after the past two years. Anyway, we talked for a while. Then he sent me for a bone density test. He should call me by Wednesday to let me know the results and what, if anything needs to be done.

When I finished there I met Bennie and Zach for lunch before his orthodontic appointment. Getting braces now is a lot fast than when I use to be an assistant. But that just goes to show how times change and things improve.

Well, I think that is all for now. But I do want to say another huge thank you to all of you that remember my family and me in your daily prayers. That in itself is a wonderful comfort and blessing. Thank you more than you know.

Quotes of the day:

A little faith will bring your soul to heaven, but a lot of faith will bring heaven to your soul.
D. L. Moody

Faith is not merely you holding on to God - it is God holding on to you.
E. Stanley Jones

I had to use both of these quotes. They just touched me today.

Blessed are they that have not seen, and yet have believed.
John 20:29

Thank you God for giving me another day. What a beautiful one it was!

Level today so far: 5

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Sunday, October 3, 2004 4:13 PM CDT

Hey everybody! I hope you are having a great Sunday. It's a nice day outside. I thought I would post real quick while Bennie is watching the game.
Part of the post came to me during Sunday school class today. Our class, as I have posted before, is studying about adversity. I am enjoying this study very much. Some have questioned if I can and do get anything from this. My answer is, "Most definitely, yes." If you look in my book you will see that I have underlined and highlighted quite a bit in it.

While I was in Sunday school someone talked about recognizing even the small blessings in our lives. It made me think of something I have done with Zach since he was a baby. You know how sometimes when you look up in the sky and the sun shines through the clouds. Sometimes there is just a small openning, but the sun just shines brightly through. To me it is one of the most beautiful sights, that and rainbows. Anyway, I have always called them "Doorways to Heaven". Because I can just imagine that is what it would look like. It would have to because it's such a beautiful sight to me. So Zach, Bennie, and I, whoever sees it will point it out to the others. It is something that I think we take comfort in. So that is just another thought of mine.

Tomorrow will be a busy day. Actually the entire week is going to be busy. I am going to see a new doctor tomorrow. He is the one that will do my bone density test and some other things. Later in the afternoon Zach will get his braces on. He is excited, but also a little nervous. Tuesday and Wednesday are physical therapy days. Thursday is a big day. I go in to have my upper and lower scopes done. I will be there a good part of the day. I'm saying a prayer that both scopes will be clear. I have been very fortunate so far to have not had any polyps in my upper tract.

Well, I think that is all for now. Enjoy the rest of your Sunday.

Quote of the day:

Sometimes the very essence of faith is trusting God in the midst of things He knows good and well we cannot comprehend.
Beth Moore

Blessed are those who find strength in you. Their hearts are on the road that leads to you.
Psalm 84:5

Friday, October 1, 2004 3:16 PM CDT

Yesterday and today I have had trouble posting. I would get it all typed out and then the site wouldn't accept it. So that is why I have posted so late yesterday and today.

I want to post very briefly about Zach. You will understand why I say briefly after you read this.
I have always said, "What affects one of us, affects all of us." It is true. From time to time I have asked Zach if he has any questions or concerns about what is going on. Or if he just needs to talk. His answer for the most part has been, "No. I'm fine." Bennie has been the one that has talked to him after every surgery. He has been very good about telling Zach what is going on.
I'm not going to go into detail about last night. I will say that the three of us had a wonderful time of sharing. Zach openned up to us about how he is feeling. He cried his little heart out and told us how scared he is sometimes. It still brings tears to my eyes now. We all know how important our mothers are to us. We depend on their love and support. Children just need to know that their mothers (and fathers too) are okay. They need that feeling of security. We talked for a long time and ended with prayer. It was very good for all of us.
So, I have another favor to ask of you. When you see my baby (yes, he knows I still call him that) will you ask him how basketball is going, or what youth was about Wednesday night, or even something crazy like what his favorite color is? Anything but, how are you doing and how is your mom. I ask that because it's tough on an almost thirteen year old to handle. Just being that age is tough enough, without having an ill mom. I just don't want him to feel like it is all about me. He needs to feel important and have a life.

Okay, so on to other stuff. I have to say that when I posted yesterday about "The Team" I was afraid you would read it a different way. So I will clear things up here. I guess I will have to be more clear about what team I am posting about. I have always joked that the doctors and I make up the "Lets Keep Stephanie Healthy" team. So, yesterday I shortened it to "The Team". But those of you that posted are right, you are "The Team". The most important team, the prayer and support team (P & S Team). You are always there for me. It's the other team that I feel like "getting on to" sometimes. I wanted to make sure that you all knew I wasn't talking about you.

Well, I went to the ENT doctor yesterday. He said that the pathology came back after my neck surgery. There were negative margins. So this place on the back of my neck slightly above where my surgery was is another tumor. It measures 3 cm x 3.5 cm. He wants to see me in six weeks and do a CT scan in three months. He said that if I notice any growth to come in before then. He also talked to me about what we could do about the tumor. He was quick to offer surgery. I asked him if he had dealt with very many desmoids in his practice. He said that he had not. So, I told him that surgery is not always the best thing to do for these types of tumors. Sometimes that just aggravates the situation. I chose to continue the chemo. We talked about my pain issues and physical therapy. I also asked him for a prescription for Zofran. A friend told me that it is the best thing for nausea. It seems like my "sicky" feeling has been worse in the past few days. I'm not sure why. It is to the point that I almost wish I would throw up. Because surely I would feel better if I did. That's hard to deal with all day long.

Oh, and I had physical therapy today. They are really working on my range of motion. Plus they had a surprise for me...a TENS unit. They are hoping that this will help with the pain issue. So, if you see me out this weekend, you may think I am wearing a beeper....but no, it's actually my new "accessory". At least this "accessory" doesn't have to be placed surgically.

I hope you all have a fantastic weekend. Remember to smile. Thank you for your prayers. It is such a comfort knowing that all of you are out there lifting me and my family up in prayer.

Quote of the day:

Peace is a journey of a thousand miles and it must be taken one step at a time.
Lyndon B. Johnson

Verse:

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.
John 16:33

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Friday, October 1, 2004 2:02 PM CDT

Good afternoon. This was a test. It didn't take my post. But I will retry when I get home from picking Zach up from school.

Thursday, September 30, 2004 1:06 PM CDT

Okay guys and girls, you are going to get another glimpse of Stephanie in this post. I have had my little crying spell. It was unavoidable. Usually when I am feeling lost, past from one doctor to the next and not knowing which one will help me, I get like this.
You all know I have been having problems with my blood pressure. I am sure it is pain and possibly cortisol related. Last week when I had my level checked I talked to the doctor about my blood pressure. His answer was to double my medication. So I did. For the past two days I have been keeping up with what my pressure was through out the day. It has still been high. The only time it was normal was after I had taken my pain medicine. So you see why I believe (doctors actually do also) it is pain related. This morning Bennie said that it had been a week with no call from the doctor about the patch issue. We have a problem with your blood pressure, Stephanie call the doctor. So I called the endocrinologist's office and spoke to his nurse. I let her know about everything. She talked to him and called me back. His answer once again was to double my medication! That would mean that in a week I would go from 25 mg to 100 mg! Well, let me just tell you, I broke down on the phone. Total sob party. I told the nurse exactly how I felt, like I was being past around from doctor to doctor with no end in sight. I also said that if any of them lived in my shoes for an hour they would run screaming. I have been living with this for almost two years. She said that she understood my frustration. She then made me an appointment for Monday so he can evaulate how I am doing.
I have finished my crying for now. Who knows when it will sneak up on me again. I am praying for inner peace to be returned to me. Please join me in this prayer. I do not question the why. I just need to know that "The Team" is all pulling together. Because the wagon gets heavy at times. But that is usually when God steps right in and pops me on His shoulder for a while. Footprints.
Lets all have a wonderful day! The sun is shining and the temperature is nice. Pass a smile on to someone and brighten their day.

Quote of the day:

What we achieve inwardly will change reality.
Otto Rank

Verse:

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your heart be troubled and do not be afraid.
John 14:27

This is so true.

Oh, and I almost forgot, I have an appointment this afternoon with my ENT doctor to go over the MRI results. I'll let you know what I find out.

Wednesday, September 29, 2004 1:12 PM CDT

Hi to all of you. I hope you are having a great day. The sun is shining and the temperature is nice. I am back from physical therapy. I told my therapist that she wasn't my best friend yesterday. We both laughed. She was kinder to me today. I have a few things to post about today. I have to tell you that it amazes me that you all read my silly post. You are truly getting "Glimpses of Stephanie". I have to thank you again for sharing this with me and for of your wonderful notes. Your support and notes are such an encouragement to me.
When I got home from PT I checked my mail. You know I am just like a kid about the mail. I had four cards from friends. Two of the cards were from a group of friends that have made it their mission and ministry to send me cards every week (they all sign every card). Then I had a card from one of the sweetest ladies in my church. She enclosed two laminated cards with special messages on them. Then the last card was from two dear friends. Inside their card was a surprise. They had found a magnet that was made by the lady that made my favorite shirt..."Put your big girl panties on & deal with it.". Let me just tell you all of those things together have just put my day over the top! I can deal with all of the other stuff. How could I not with all of you wonderful friends. I am so very blessed and fortunate. I thank God for blessing my so richly.
This next part will be kind of long. But I just had it on my heart to share this. I know a lot of you are familiar with this song, If You Want Me To, by Ginny Owens. I have listened to this song more times than I can possibly count in the last two years. It has been and is still a huge comfort to me. So I wanted to share the words with you.

If You Want Me To

The pathway is broken and the signs are unclear.
And I don't know the reason why You brought me here.
But just because You love me the way that You do I'm going to walk through the valley if You want me to.

Cause I'm not who I was when I took my first step.
And I'm clinging to the promise, You're not through with me yet. So if all of these trials bring closer to you, then I will go through the fire if You want me to.

It may not be the way I would have chosen. But You lead me through a world that's not like home. But You never said it would be easy. You only said I'd never go alone.

So when the whole world turns against me. And I'm all by myself and I can't hear You answer my cries for help. I'll remember the suffering Your love put You through and I will go through the valley if You want me to.

Well, I am going to stop here for now before this gets much longer. I love this quote. Oh, and the verses for the day...yes...verses (8 of them).

Quote of the day:

Faith is not belief without proof, but trust without reservation.
Elton Trueblood

Verses for the day:

There is a time for everything, and a season for every activity under heaven:
a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance,a time to scatter stones and a time to gather them, a time to embrace and a time to refrain, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace.
Ecclesiastes 3:1-8

I truly believe this. I know that I am right where I am suppose to be. I do not question that one day. I have to say that I am so very thankful Zach does not have this genetic disease. Because he doesn't have the defective gene it means that this disease stops with me. He cannot pass it on to his children one day. But in the same breathe I have to say that my mother will say that she is so sorry that I have to deal with this. She wishes she could take it away. I understand how she feels, being a mother myself. But I am always very quick to assure her that it is part of what makes me the person I am today. That's why I never question why, it's just a part of me. Everybody has something they have to deal with. What matters most is how we handle it.
Thanks for reading my thoughts. I hope you enjoy them. It's just another part of me. Have a great afternoon!

Don't forget to click on my guest book. Your notes are such a blessing to me. They put a big smile on my face!

Tuesday, September 28, 2004 3:55 PM CDT

I am posting another journal entry today, like I promised I would. Earlier I wasn't sure what I would post. I just knew that I would. I actually do have things to post now. First I am going to start with a little entertaining tidbit. It was funny to me. I hope you enjoy it as well. I went to Wal-mart this afternoon to pick up a few things. As I was pushing my buggy out a lady in front of me had one of those flat carts loaded with 8 big tv boxes. I couldn't see her the boxes were so high. I noticed that one of the back boxes on top was sliding off as she rolled over the threshold of the first doorway. You know how Wal-mart is set up. You have two sets of doors you walk through. In the area in the middle were two older men sitting on a bench. I guess they were doing like my papa use to do, waiting on their wives to finish shopping. I could tell they were just enjoying people watching and visiting with each other. I smiled at them as I walked by. Then, I stopped my buggy and quickly pushed the box back into place for the lady. She had no idea it was about to fall offher cart. I couldn't let her box fall! The next part is what is so funny. As soon as I did that, one of the old men said, "Nice save.". Then slightly lower he added, "You sure are a cute young lady." I never looked back at them. I just pretended like I didn't hear his second comment and continued to walk out the door. But I did smile all the way to my car and actually laughed on the way home just thinking about it. It was just something so out of the ordinary. A lot of days I struggle with how I feel and of course, when you don't feel good it can make you feel like an ugly duckling. So, that little comment I took as a wonderful, much appreciated compliment, another answer to prayer. God knew something so small would be good medicine in alot of ways; good for a smile, a couple of giggles, and just an unexpected compliment, good for the spirit. Anyway, that is the funny part for today.

Now I have other stuff to post about. I had no idea my comment in Sunday's post would cause such a stir. I have heard from a few of you about how the thought made you feel. I promise I didn't mean it the way that some of you read it. But I do understand what you were saying. I meant my wish is that when people meet me that is how they remember me, smiling.
But it's good to reflect from time to time about how we live our lives. We need to know that we are accountable for our actions and how we affect other people's lives.

Well, I am done for now. I hope you are all having the most wonderful day. For those of you that are wondering...level 5, still. But it has been a pretty good day. Still no call or email from the doctor, though. Oh well, tomorrow is another day.

Quote:

"The greater the odds, the better for God."
Charles Stanley

Verse:

I will praise God's name in song and glorify him with thanksgiving.
Psalm 69:30

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Tuesday, September 28, 2004 8:09 AM CDT

Good morning!
I know I had said that I would post yesterday afternoon. But the day got very crazy, the words weren't there yet, and it was another "not too spiffy" day. But a bright spot in the evening was that I got to spend time with my step-daughter (I call her my baby girl). We don't get to do that as often now because she has moved into Nashville and works in Cool Springs. All of that, plus she is going to school. It keeps her pretty busy. We enjoyed being together last night.
I have to tell you that I unintentionally made Bennie cry because of something I said in Sunday's post. The part where I said, "...that is how I always hope to be remembered.". He said that it made it too real the possibility of being here without me. He said that he had cried off and on while he was working on yesterday. He told me that everytime I am having a bad day with pain or I am feeling nauseous and hurting he worries that it could be a bowel obstruction. Bowel obstructions, for those of you that don't know, can be a very dangerous thing for me. I am very sure that I prayed and worked my way through one on Sunday night. My pain level that night, or actually in the wee hours of Monday morning, was a strong 9. At one point I almost woke Bennie up to take me to the hospital. That is another reason Bennie was so emotional yesterday. So I have been very careful and will continue to be until I get back to my comfort zone.
A lot of you have asked me to post what my pain level is. You say it helps you when you are praying for me. Some of you have told me you are just curious, because you can't believe I can walk around and function at the different levels. But you know what? You just do and handle what is given to you. This morning I am starting at a 5 already. It's just crazy because there isn't anything I do that makes the pain worse. I know that it's the tumors, scar tissue, and abscess that are causing the pain. So I continue to take my chemo and pray for shrinkage.
I am going to stop here for now. I promise to post more later this afternoon. I hope you all have a wonderful day. I can see the sun shining outside my window. That makes it a good day already. Remember to smile.

Quote of the day:

Faith is the daring of the soul to go farther than it can see.
William Newton Clarke

Verses:

Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.
1 Peter 5:6-7

One more important thing, please pray for my mother today. She is having some test and possibly a procedure for her heart today. She is such an incredible woman and I depend on her strength. Thank you for remembering her today in your prayers.

Sunday, September 26, 2004 10:16 PM CDT

Well, it is Sunday night. I love Sundays. I look forward to them all week. I enjoy the fellowship and worship we all share together. It comforts and strengthens my soul. In sunday school, I think I have mentioned before, we are studying about adversity. Our class always has great discussions. Many people have talked to me about things they are going through. They are always very quick to say that what they are going through does not compare to what I am going through. My reply to them is always the same. What they are going through is just as real and just as tough. God knows what we are able to go through. He has a plan for all of this. You just have to put your faith and trust in God to bring you through it. Also know that it is for His glory. I do not ever ask why about any of this. I trust and believe God's purpose. I pray everyday that God uses this to bring glory to Him.

I have to tell you all something that is so very sweet. Some friends of ours told me today that one of their sons asked them, "How can Ms. Stephanie be so sick? Because she always has a smile on her face." That was such a wonderful thing to hear. Because to me that is how I always hope to be remembered. What a wonderful thing.

Tomorrow I have physical therapy in the morning. My therapist is doing some tough stuff to me. I'm not looking forward to that. Hopefully I will hear from the doctor about the patch. I emailed him to let him know it was a very bad thing. So I will post in the afternoon tomorrow. I hope you all have had a wonderful weekend.

Quote of the day:

The essence of faith is being satisfied with all that God is for us in Jesus.
John Piper

Verse:

Show me your ways, O Lord, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.
Psalms 25:4-5

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Saturday, September 25, 2004 12:51 AM CDT

I wanted to post now to all of you. Everyday you continue to bless and amaze me with the things you say and write to me. In the beginning, I started this journal for two reasons; one as a kind of therapy and diary for me of all of this, and two because some of you had said it would be an easy way to keep everyone up to date on things. So when you tell me what a blessing this journal has been to you it is overwhelming to me. I honestly just pour my heart into this. You are getting true "Glimpses of Stephanie". Thank you for sharing this with me. This journal and all of you bless me every single day. Words cannot express my heartfelt grattitude.
Well, I have to post about today. I love Saturdays like this. Our community is having another "Chicken/Rib Roast & Car Wash" to raise money to pay off the balance of the middle school basketball floor. It's great to live in a community like ours because the kids can go down there and run around, hang out with their friends, wash some cars and just enjoy the day. I love being there also just to be able to visit. I went down earlier to pick up our chickens (the ribs were already sold out for this time). I stayed for a little, had to get my car washed, of course. Then I decided to come home for a little bit to cool off and rest. I will probably go back in just a bit. I have to check on Zach and pick up the ribs. Zach is like me. He loves Saturdays like this. After we had the "Stephanie Day" here some friends of mine were talking about how much fun the day was and Zach said, "Yeah, it was. We ought to do that more often." We all laughed. It's just fun to have days of fellowship like that. It makes the "sun" shine a little brighter.
I have to tell you this also. I think it is so sweet. A friend called me yesterday to tell me she saw another rainbow and thought of me. I have to say that was such a sweet thing for her to do. It's the smallest of things that touch my heart. Thank you for that.
I also want to share this with you. One of the songs I have been enjoying, "Thank You" The Katinas, has really blessed me. If you can get it I know it will bless you. I have it on a cd called Absolute Worship. It has some wonderful praise music on it.

Some of the words are:
Just a little while longer I want to pray.
Can't get you off my soul, came to say,
Thank you Lord, just for loving me.
Many times I do forget every need that you have met.
Oh thank you Lord, I know you are showing me
You are there when I am down and out
You're holding me. Your love is so amazing. It changed me.
Chorus
So here I am with all I have
I raise my hands to worship you
I want to say thank you, thank you Lord.
For everything, for who you are, you cover me
and touched my heart.
I want to say thank you.

I just love this song. It really touches me and I wanted to share it with you.
Well, I have rambled on enough for this morning. Please click on my guest book. You know that really brightens my day. It's good for the "sunshine" factor.

Quote of the day:

Never lose an opportunity of seeing anything that is beautiful; for beauty is God's handwriting--a wayside sacrament. Welcome it in every fair sky, in every fair flower, and thank God for it as a cup of blessing.
Ralph Waldo Emerson

Verse:

And we know that all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28

Friday, September 24, 2004 10:43 AM CDT

I know you were all waiting for me to post yesterday. When I tell you about yesterday you will understand why I didn't. If I don't post on a day it is for one of a few reasons, either I am having a really bad day or the words just aren't there. Yesterday it was actually for both of those reasons. The night before I applied my first pain patch. I still slept about the same and still had pain that night and the next day. Most of the day it stayed at a 3, which is a normal day for me now. I started feeling yucky yesterday about mid morning. So, I laid down for an hour. For those of you that really know me, you know what a big deal that is for me. When I got up I felt a little better. I went to have lunch with some sweet friends of mine. We had a wonderful time of fellowship. I enjoyed it so much. It was such a blessing to me and a bright spot in what ended up being a bad day. I think I kind of scared them though when I got sick at their house. I tried everything in my power not to get sick. When I realized it wouldn't work I was afraid I wouldn't be able to make it to the bathroom. Thankfully I did. After that I felt a little better. We talked a little longer and then I left. When I got home things just went down hill from there. I became deathly sick. After throwing up 12 times Bennie called my endocrinologist's office and left a message for him. I had called my nurse earlier, but she was very busy and said she would page the doctor. The endocrinologist called back. He suggested that I should remove the patch and up my hydrocortisone dose for a day or two. If I wasn't feeling any better to call him back. He also said that I might want to try the patch again in a couple of days. I never heard from the other doctor. Last night I felt alone and with no help from the doctors or nurses. It was very frustrating. It just made me want to cry and I did. I really don't like times like that because I feel alone in this fight as far as it goes with the doctors. I know I am never alone though and that is what keeps me marching on. Today, I am feeling a little better. I am just taking it easy. Thank you all for your calls. I am very blessed to have you all in my life. You brighten my days. Your friendships are such a treasure to me. Thank you for sharing yourself with me.

Please go by my guest book and leave me a little sunshine.

Quote of the day:

If it takes my whole life I won't break I won't bend.
It'll all be worth it, worth it in the end.....
Sarah McLachlan

Verse:

For where your treasure is, there your heart will be also.
Matthew 6:21

Wednesday, September 22, 2004 5:42 PM CDT

I made it back! Boy, I'm a little tired and still processing some of the stuff I talked to the doctors about. First of all, I know you are all wondering about my cortisol level...still the same. But the endocrinologist had told me that he expected it to be. He also reminded me that it would most likely take 18 months before the right adrenal gland woke up and started to function again. So, no big surprise there. We did discuss my blood pressure and it's still running high. He changed my low pressor (doubled the dose). I'll have to monitor how I do with this new dose. After I finished there I went on to meet with my surgeon. We talked about a lot of issues. Of course we discussed pain management, my appointment with them, and what to do between now and then. He gave me a prescription for a patch. Hopefully this will make a difference and possibly help my blood pressure. We discussed the desmoids and what is the best way to handle them. We were both in agreement that no growth is something to be very satisfied with, because surgery is not an option. I am going to stop here for now. I am very tired and to tell you the truth, don't feel too good. That is a hard thing to admit. It's just not my character. But it is another lesson learned.
I do want to share this with you. It was a part of my devotion today.

Promise:

Waiting for God's timing brings great rewards.

Verse:

"...If it seems slow, wait patiently, for it will surely take place. It will not be delayed."
Habakkuk 2:3

Quote of the day:

The habit of giving only enhances the desire to give.

Walt Whitman

I just wanted to share that with you. I really like that thought. Please check out my guest book. Your notes really brighten my day. And yes, to the ones that called me to ask if I was enjoying the sunshine and a smile. Thank you!

Tuesday, September 21, 2004 11:44 AM CDT

Hi.
I got a call from the doctor's office for pain management. Yesterday I was trying to remember who was suppose to call me. I could remember being told someone (either pain management or the new ENT doctor)would call me to set up an appointment. But, of course, I was in a fog from the pain medicine and phenegran on Friday when I was told this. I called yesterday morning to both offices to see if I could figured it out myself. But neither office knew anything. In fact, I was told that the pain management doctor was not taking any new patients. This particular doctor is suppose to be the best. So I was disappointed and just said a prayer that it would work out one way or the other. At this point I would see just about anyone. But I would really like to see him. So, I was happy and surprised when I got the call from that doctor's office this morning. The lady I talked to said that she was asked to get me in. The doctor doesn't have an openings until November 22nd. She is going to put my name on a list in case there is a cancellation and she can move me up. Here I have to put in....prayers being answered over and over again. If you doubt that come to this journal or call me. I will tell you. Plus, just look outside at the beautiful day today.
Here I have to talk about my friends and family. I am so tremendously blessed with so many wonderful, thoughtful, caring, supportive friends and family. I could not have the smile I do without all of you. Everyday you all touch my life in one way or another. I love you all very much and am so thankful for you.
Please visit my guest book. Leave me a note. Go enjoy the sunshine today.

Quotes of the day:

Real friendship is shown in times of trouble; prosperity is full of friends.
Euripedes

Hold a true friend with both your hands.
Nigerian Proverb

Verse:

And now these three remain: faith, hope and love. But the greatest of these is love.
1 Corinthians 13:13

Monday, September 20, 2004 10:05 PM CDT

Hi everybody. I'll bet you have been wondering where I was. I have had a busy day. You know I had physical therapy this morning. Of course, all my therapist did was re-evaluate me because my blood pressure was still 156/106. But she decided to put some pain on me before I left today. My shoulder has actually frozen up. So, she worked on it for a while and let me just say.....ouch!
I have a copy of my MRI report from Friday. I am still going over it and comparing with the CT report I have from before my neck surgery. This report does read that there is a "lesion (16 x 8 mm) within the right trapezius muscle. This is likely a known desmoid tumor." I already knew that was there. So now we just have to decide what the best course of action will be. I have a lot of questions and thoughts that I plan on sharing with a couple of my doctors this week. I am also hoping to hear from the pain management clinic. Wednesday will be another busy day for me. I have to have blood drawn by 8:00 am to check my cortisol level. Then I see my endocrinologist. From there I go on to see another doctor. If that wasn't enough, Zach has a consultation with the orthdontist after school.
I am going to stop here for now. Not many words for today. I guess I'm just a little tired.

Quote for the day:

The way to see by faith is to shut the eye of reason.
Benjamin Franklin

Verses:

I will sing to the Lord all my life; I will sing praise to my God as long as I live. May my meditation be pleasing to him, as I rejoice in the Lord.
Psalms 104:33-34

Please click on my guest book and leave me a note. If you don't feel comfortable leaving it in the guest book, send me an email. Your notes and emails really brighten my day. I'm trying to decide on the next "Glimpse".

Saturday, September 18, 2004 9:16 PM CDT

Surprise, surprise, another post. Two in one day. I knew earlier that this one was coming. I have posted before that I don't sit down to do this until I feel the words. I did try to post once last weekend about how this all started when I was eight years old. But after about four or five sentences I deleted it. It just didn't come out. It wasn't time. So that is a story for the future. I have had a wonderful day. My day was made wonderful by so many people and things. First of all, it was such a beautiful day. I had lunch with Bennie, his sister and her husband. Then I got to have dinner with our Sunday school class. Now that was a lot of laughs. So there were a lot of smiles to help me through the day. My blood pressure and pain have been the same, no change. Blood pressure is still too high and tonight pain is a strong eight. I am ready for help from pain management.
Anyway, as I said, I already knew earlier that I would be posting again today. I had a wonderful sharing time with my sister-in-law (really she's my sister) today. While we were talking I just felt this post. So here it is. It will be another little glimpse of Stephanie. It will also probably be good for another laugh or two.
When I was a little girl I always thought I was here for a reason. Being a child I wasn't sure what the reason was, I just knew. I can remember my Granny use to always tell me how pretty I was. She would tell me that when I grew up that I was going to be Miss America. (Feel free to laugh your heart out here) Well, you know that's all I needed to hear. I thought, maybe that is the reason. So my cousins and I would have Miss America pagents on my grandparent's front porch. Of course, that meant we had to pick Granny's flowers for bouquets. Guess who usually got the crown? Well, of course it was me. Because my Granny had told me I would be Miss America. Later, I realized that was probably not the reason. One clue to me was that I wasn't ever going to be tall enough. But as time went on I thought many different things were the reason. After I had grown up I started thinking please, please I need to know what the reason is. It was so important to me to make a difference. I know now that I am making a difference. Thank you to so many of you for letting me be a part of your lives and for enriching my life. This wonderful sharing started years ago with our FBI youth group we had. I know without a doubt that God is a part of all of this. Some of you may think I am crazy but I know that I am right where I am suppose to be. Even when I am at my highest pain level and things look the darkest I still feel that blanket of comfort around me.
I have told you that music is a huge part of my life. Everyone that came to the benefit concert got to hear some of the music that I listen to everyday. There is not a day that goes by that I don't listen to Thomas and Leah. They have been a huge blessing to me. For those of you that have asked the website to purchase some of their music is: www.thomaspayne.net. It will be money well spent, I promise you. I have also been enjoying: Point of Grace (favorite - My God), Ginny Owens, and The Katinas.
I listen to this most of the day.
Well, I have rambled on. That is all for tonight folks. Go to bed, get some rest. You never know, I might give you another glimpse of Stephanie tomorrow.
Thank you to those of you that have been so kind. You know who you are: the cards to Bennie and Zach, the phone calls to all of us, the meals, and so much love, support and prayers. We are strong because we are in this together.
Please remember to click on my guest book. Plus, check out the new photos.

Quote for tonight:

Adversity brings knowledge and knowledge wisdom.
American Proverb

Verse:

The Lord will stand with me and strengthen me.
2 Timothy 4:17

Saturday, September 18, 2004 9:32 AM CDT

It's Saturday morning and the sun is shining. I am really concentrating on that because I told Bennie that the little girl side of me just wanted to cross my arms and pout. Now what do you think about that? I say that because I woke up this morning at a pain level of 8. I have been fighting taking my pain medicine. I didn't want to spend another day in the fog like yesterday. Even taking both medicines yesterday my pain and nausea never went away. Plus, my blood pressure is still pretty high. But they believe it has to do with my pain level. I have to praise my nurse. She use to be the nurse that works with my surgeon. She works with another doctor now in the same clinic. But she has become a wonderful friend. She told me just to let her know when I am coming in and she will be my nurse. That is such a tremendous comfort, more than she will ever know. God has truly blessed me by surrounding me with wonderful, caring people that take care of me. For that I am so thankful. Because of this nurse (friend) I don't have to wonder if it is okay to call to ask a question. She has been so kind and helpful and for that I am forever grateful. That is a huge stress relief for me and that is so important.
Well, I guess I better stop my rambling and catch you all up to date. It has been a pretty crazy, hectic few days. Yesterday, as I said, ended up being somewhat of a fog for me. I spent most of yesterday at my "second home", Vanderbilt. My blood pressure was still high, even after taking a second blood pressure pill. So, the doctor wanted me to come in for labs. The thing with me is that I go downhill very quickly. So there isn't time to waste. I have learned to be very in tune with what is going on because of that. We went in, had labs drawn. The nurse did it with an iv port in case they decided I needed fluids later. So, then we had to wait for the results. After lunch we came back. Most of my labs looked okay. One test that shows how your immune system works was off. But that is most likely due to the tamoxifen (chemo) and hydrocortisone (cortisol) I have to take. They suppose your immune system. I have been trying to find out about pain management since I got back from Texas. The nurse got me hooked up with a pain management doctor. They should call me on Monday. She told me they could give me a patch that I would wear for three days, time released, that way I can still function. How wonderful will that be? Just get me through till Monday! It makes me think of the verse...I can do all things.....true, true.
Well, after the results, she checked my blood pressure again...still high. I was still very sick to my tummy. So she gave me a shot of phenegran. Well, you know that just about put me to sleep. She talked to my mother and me for about an hour before we left for my MRI. Let me just tell you, I had the hardest time trying to keep my eyes open. You would have had a great time giggling at me. I know it was hilarious. So, then my mother and I go for the MRI. We have to wait for a while. Of course, I am still dozing in and out while we are waiting. Do you know that when it was finally my turn, I slept through most of the MRI. For those of you that have never had one, if you are scared of small spaces, this is not the test for you. They did an MRI of my head and neck. I had to put my head into this frame, he put all of these pads around my neck to keep my head still. Then he clamped the top over my head and shoulders. I imagine it kind of looks like an astronaut helmet. Then he slid me into this long narrow tube and for the next hour, whenever I was awake, I heard all of these very loud banging noises (even with the ear plugs in). I know that I fell asleep off and on during the MRI.
So, now we are waiting. It will be, hopefully, Monday when we hear about the MRI. The pain management place is suppose to call on Monday also. Plus, my "favorite" nurse (and friend) gave me the name of anothe ENT doctor. So, I will call on Monday to try to make an appointment with him. Please continue to pray for me and my family. I am looking out the window here and I see the sunshine. I am embracing that and bringing it into my heart. To me sunshine is happiness. But I do know that to have the wonderful rainbow we have to have the rain. I hope you all have a glorious weekend.
This is a added note. Zach and a friend of his are getting baptized tomorrow at church! We are so excited. So the weekend is already beyond wonderful.
Plus, check out the photos...there are two new pictures.
After you check out the photos leave me a little note, brighten my day a little more, I wanna wear shades because it's so bright...ha ha. Love to you all and many blessings.
Two quotes for today:

They can because they think they can.
Virgil

There are many things that are essential to arriving at true peace of mind, and one of the most important is faith, which cannot be acquired without prayer.
John Wooden

Verses:

"Have faith in God," Jesus answered. "I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."
Mark 11:22-24

Friday, September 17, 2004 1:49 AM CDT

Well, we've had another first at the Crowe house.
The paramedics came to our home. Yes, Bennie had to call them for me. Last night I had been to a Southern Living party that a friend had. I got home a little after 9:00. I had had a nagging headache all day. I figured it was due to the weather. After I got home it intensified very quickly. Within literally minutes it was so bad that I felt like the left side of my head would explode. I was sick to my stomach also. I have a very high tolerance for pain and this was more than I could handle. I was scared. I wasn't sure what to do. I didn't want to scare the boys. So, I took my blood pressure. It was 164/115! I was scared. I came to my computer hoping and praying that a friend of mine, that use to be a nurse, would be online. She was. We talked back and forth and she said basically what I already knew. But you know how it is, sometimes you just need that. So, I called Bennie into the room and told him what was going on. He took my blood pressure again. It was still high. So he called the paramedics. They came, took my blood pressure and talked the doctor on call for my internist. I had taken my blood pressure medicine a little late last night. The doctor on call recommended that I take another blood pressure pill and monitor my blood pressure. If that didn't help or my blood pressure got any higher he said to go to the ER. The paramedics believe that this is being caused by some other problems...like a sinus infection, dehydration and/or a combination. As you can tell I am awake even after taking pain medication also to hopefully help with the excruciating pain. So, I will be talking to my internist as soon as she gets in. I just checked my blood pressure and it is 149/107. That's still pretty high, especially after taking a second pill. That has been the excitement at the Crowe house. I am too tired right now to post about the doctor appointment I had yesterday. Remember I asked you to pray about that? I will post later today about it. I will tell you that prayers were answered at the appointment and afterwards. I am amazed and blessed everyday by your continued love, support and dedication to praying for me and my family. Thank you from the bottom of my heart.

Quote of the day:

The harder the conflict, the more glorious the triumph.
Thomas Paine

Verses:

I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.
Psalms 27:13-14

Please click on my guest book. Leave me a little sunshine. I am forever blessed by your notes. I pray that you are as richly blessed in return.

Thursday, September 16, 2004 8:06 AM CDT

Good morning!
I decided to post this morning before my doctor appointment. I have to post about this. It ended up being another lesson for me. This one was a sweet and pretty easy one. Don't you like those? The tougher ones sometimes take a time or two to sink in. But anyway, back to the post. I decided to go to youth last night with Zach. I had actually decided to go a few days ago because my friend was going to be the guest speaker and she had expressed that she was nervous about it. I was amazed that she, of all people, would be nervous. I just didn't think she would be. Kind of thought it would be no big deal for her. Guess what she spoke about? Acceptance. Accepting ourselves as the beautiful creatures God has created. She also talked about insecurities. You know I think I was suppose to be there, not only for my friend, but also for me. I love it when my lesson is a pretty easy one. It was eye openning to find out that she could be nervous about speaking in front of a group of teens. She is a teacher and stands in front of kids all day long. But this was important, not that teaching isn't. It was such a blessing to me. Because I am not one to normally stand up and speak. But I am finding my comfort level in it more and more everyday. Thanks to my friend I know that I am not alone. I truly enjoyed your devotion last night. Thank you for sharing.
Now I have to get my "big girl" shoes on to go deal with this nurse and talk to the doctor. I'm going to ask him if he is going to be a part of the "Lets Get Stephanie Well" team or not. If not, then it's time to move on.
I hope you all have a great day.

Quote for the day:

Our prayers bring us into God's presence.
Unknown

Verse:

The Lord is close to all who call on him, yes, to all who call on him sincerely.
Psalm 145:18

Wednesday, September 15, 2004 7:33 AM CDT

Good morning.
I had planned on posting another journal entry last night after Zach's football game. But it was late and I was tired. I'll start off with the football part of the story. It's kind of entertaining. So I thought I would share it with you.
Zach, as I have already told you, has decided to play football. Monday was his first practice and yesterday was his first game. Of course, it was away. Bennie and I drove to Dickson for the game. When we got there Bennie looked for Zach. When he found him he said to me, "He doesn't have any pads on. Why?" I told him that he hadn't been given his equipment yet. Bennie replies, "So we came to watch him, watch his game." I just looked at him and said, "Yes. We are here because we're suppose to be and it's his first official game with the team." He just smiled at me. That's what he does because he knows that's just how I am. Anyway, after the game we leave to meet the team at the middle school. Little did we know what we were in for. We got on the interstate and right at the Cheatham County line we came to a dead stop. We stayed for the next hour and a half. So long that some people turned off their vehicles. Bennie and I actually fell asleep waiting. Let me tell you I dropped off so quickly. It was probably the best rest I have had in a while. Now that has got to be good for another laugh...falling asleep on the interstate! Remember, laughter is the best medicine. I'm glad I can help you out.
But I do have other stuff to post....doctor stuff. After I talked to my surgeon Monday evening I emailed another doctor of mine. He is the one that does my drains and drain studies. A lot of times when I have questions I will email him. He is very good about answering my emails and giving me his opinion. I truly value that. So, I emailed him about my last 2 CT scans. I asked him to look at them and tell me what he thought. His response was that the "fluid collection" is really an air collection and that that area is a cystic desmoid, which means the fistula probably never closed. He said that he wasn't enthusiastic about having to place another drain. He also wanted to know more about the mesentary desmoid. After I read his email I wanted to cry. Because it felt like a vicious circle. From time to time it feels like that to me. Just when we think we have one thing or a couple of things taken care of, they pop back up again. We thought the fistula was a problem of the past (have had to deal with a few fistulas...not fun), only to read yesterday that that doesn't seem to be the case. So, one step forward and two back. I emailed him back with some more questions. He was very quick to repond that he had never heard of a cystic desmoid before. He said that my surgeon had called it that. He talked to me more about the fistula and placing a stent in the ureter. He asked about my pain and said that is a reason to consider the drain. So, I answered his questions and am waiting to hear back from him. But I did tell him that after his second email I felt a little better. What he said answered some concerns that I had and explained some of what I am dealing with. Anyway, I will let you know what I hear from him next.
I hope you all have a great day!!!!!!

I want to add this...this is very important to me.
My thoughts today are that I am not on this journey alone. each and every one of you are an important part of this. Thank you for being here for me.
Please click on my guest book and leave me a note.

Quote of the day:

Friends are the sunshine of life.
John Hay (1871)

Verse:

Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up!
Ecclesiastes 4:9-10

Tuesday, September 14, 2004 9:10 AM CDT

Good morning!
I decided to entertain everyone a bit this morning. After reading my friend, Jackie's, post I have to tell you all this. It will be good for a laugh and feel free to do that. Laughter is the best medicine. I'm so glad I can help you all out with it. You will understand what I mean after you read my post.
Yesterday, Zach had his first football practice. Yes, the season has already started. He has been thinking about it for two weeks and finally made the decision to play. So, as I was waiting for him to finish practice, I was listening to a cd and watching the kids. Just as Zach started walking toward my car I looked up into the sky and saw the most beautiful rainbow! I can't remember the last time I had seen one. It has been a while. This one was just as Jackie described, very vibrant and beautiful, one to make you just take a moment and thank God for the gift of a rainbow. When Zach got into the car, of course, I shared it with him. Then as we were driving away (and get ready for the funny part) for those of you that don't live in this area, the high school is across the street from the middle school, we stopped at the traffic light and straight in front of us was the rainbow! It had been over the middle school. (laugh now) I stopped at the light and was just amazed at the thought of a double rainbow. When we got home I told Bennie about it. He smiled at me and said that it wasn't a double rainbow. That a rainbow is a reflection of light and that it moves, that is why there is no end to it. Well, my response to him was that I was going to keep thinking about my double rainbow. It was an amazing sight to me. He laughed and said that was one of the things he loved so much about me. ( I guess he is talking about the little girl in me...ha ha).
Rainbows are wonderful promises. I hope you had a chance to see yesterday's rainbow.

Quote for the day:

What lies behind us and what lies before us are small matters compared to what lies within us.
Ralph Waldo Emerson

Verse:

It is God who arms me with strength, and makes my way perfect.
Psalms 18:32

Monday, September 13, 2004 9:55 PM CDT

Hi.
Well, I have talked to my doctor. He said basically exactly what I had expected. The tumors didn't appear to have grown any. They haven't shrunk any yet either. But no growth is a good thing for now, at least until they start to shrink. I still have a unexplained fluid, soft tissue mass. He is trying to decide if he should go ahead and place a drain. He also emailed my urologist to see if he thinks I should have another stent placed as a protective measure for my ureter and kidney. The reason for that is because on the right side he could only remove about 80% of that desmoid. So, we will see what his answer is. I also emailed the doctor that placed the drains I have had. I asked if he would look at my last two scans and give me his opinion about placing another drain and the stent. Hopefully, I will get a response from him tomorrow. I did talk to my ENT's nurse today. I just have to tell you...this isn't very nice of me...but I don't care for her at all. She always talks to me like she thinks I am stupid, like I don't have a clue of what's going on. I had left a message asking her to please schedule a MRI for me either at the hospital or at another place I go before Thursday. I said that I wanted this done so that the doctor would have the report by the time I see him on Thursday. When she returned my call she asked me why I thought I needed this? My response was that this doctor had removed a desmoid from my neck. He was not able to remove it all though. So, follow up should include MRIs to monitor the part of the tumor that is left. By doing this it will also let us know if we should do any radiation. I also said that the doctor at MD Anderson had recommended this also. She was very short with me and said that it would be tomorrow afternoon before she could even give the note to the doctor. My thought on this is... that there is more than one way to accomplish something important like this. I already have it figured out and will work on it in the morning. I am scheduled for my next CT scan in the middle of October.
Please continue to pray for Bennie. His day was a little better today. But he said that he is still having a tough time. Give him a call just to say hi. Thanks so much to all of you. You just don't know what an incredible strength you all are to me. Please click on my guest book and leave me a note...a little piece of sunshine.

Quote of the day:

Faith is to believe what you do not see; the reward of this faith is to see what you believe.
St. Augustine

Verse:

Grace and peace be yours in abundance through the knowledge of God and of Jesus our Lord.
2 Peter 1:2

Monday, September 13, 2004 7:16 AM CDT

Good morning everyone! I hope you all had a great weekend. I'm sorry I didn't post yesterday. But I was very tired after the church picnic. We had such a wonderful time. I was so glad that we were able to go. We are very blessed to be a part of CRBC. Thank you everybody for being so loving and supportive. It is such a strength and encouragement to us.
I have a favor to ask of all of you that know Bennie. He is having a tough time right now. Sometimes it just gets a little overwhelming to deal with. It's funny because when one of us is having a tough time the other is stronger and we comfort each other. Our church is doing a study on adversity right now. Yesterday's lesson, Bennie said just hit a little too close to home. He was having a really hard time. I think he still is this morning. A lot of times we are so quick to comfort and offer support to the person with the illness. But we don't always remember that their family is right there in the heat of it also. So, my favor to ask of you is to please reach out to Bennie, give him a call (at home or on his cell phone 243-1212) or send him a note. Just let him know that you are thinking about him. You just don't know how much that brightens my day when you do that for me. So, I know it will truly surprise him. He won't be expecting it. He is such a wonderful, caring man and I am very thankful for his love and support through all of this. I am blessed so richly by my family and friends. Thank you all so much!

Quote of the day:

Courage is not the absence of fear, but rather the judgement that something else is more important than fear.
Ambrose Redmoon

Verses:

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
2 Corinthians 4:17-18

Friday, September 10, 2004 9:47 PM CDT

Hi.
I know you all have been patiently waiting for me to post. I've been trying to patiently wait for my doctor to call. Well, no phone call, no email. So now it will be Monday before I know anything for sure. I do have a copy of the report. I kind of know what he will probably say. But I sure would have liked to talk to him. This is a test of patience.
Since I don't have any news about the scan yet, I'll tell you about the experience. My scan was set up for Wednesday morning at 9:00. I was getting ready to leave and got a phone call from the imaging place. The lady that does my scans was out sick with strep. The girl on the phone said that I could go to Cool Springs to have my scan done or reschedule for another day. I ask her to reschedule me. So, my new appointment was for the next morning. I had to leave at 7:00 because of traffic to be able to be there by 8:00 (my new appointment). Well, when I checked in the girl at the desk said that she had tried to reach me before I left to let me know that Kathy was still out sick. She said that I could either reschedule (AGAIN), go to Cool Springs, or wait for the person they had called in to do the scans. This lady was suppose to be there at 9:00. I told her that I would wait because this was the second morning in a row that I had gotten ready for this and I can't eat or drink before I have my scan done. So, I waited. Little did I know what special concoctions they had in store for me. Let me just tell you, I have had barium contrast every way you can imagine. It's not a tasty drink either. But I will tell you it's not as bad as the gastro graph they gave me...after I had drunk the large cup of barium. I promise this is not a whine, it's just the absolute truth. That Gastro graph is the worst thing I have ever tasted in my entire life!!!!! It is SO nasty!
I was a good girl and drank it down because I wanted to get some good pictures. The radiologist said that I would light up real good for them since I had drunk both.
So, now we are just waiting...trying to patiently wait...to hear from the doctor.
I am going to move on now to other stuff. I want to say thank you to everybody that has been signing my guest book. Your notes and emails really brighten my day. Thanks also for the phone calls and prayers. I am able to keep a smile on my face because of the prayers that are being sent up for me. Thank you for continuing to pray...please don't stop. You know this journal is just my thoughts and stuff that goes on with me. It's a great way to let everyone know what is going on. But more than that it is such a blessing to me. Thank you all for letting me know what you think about it. Also, some of you have emailed me asking about my syndrome. If there is anything you want to know please feel free to ask. Sometimes it helps to know more about people you are praying for. Thank you more than you know for all of the love and support you give to me and my family. We are very blessed and thankful!
I hope you all have a wonderful weekend. Hopefully, I will have news to post about my scan on Monday.

Quote of the day:

A bird doesn't sing because it has an answer, it sings because it has a song.
Maya Angelou

Verse:

They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him."
Lamentations 3:23-24

Thursday, September 9, 2004 7:15 PM CDT

I know you all have been waiting for me to post. I did have my CT scan this morning. Now that is a story in itself. One that I promise to tell you tomorrow, along with hopefully what I hear from the doctor. I do have a copy of my report and of course, I have done my research. But I will wait until I hear from the doctor before I post about it. Plus, I have been sick since last night. I'm really not feeling like myself. So, I am going to take some medicine and go to bed as soon as I finish this. Thanks for continuing to pray for me.

Quote for the day:

Great changes may not happen right away, but with effort even the difficult may become easy.
Bill Blackman

Verse:

My comfort in my suffering is this: Your promise preserves my life.
Psalms 119:50

Wednesday, September 8, 2004 3:30 PM CDT

Hi everyone!
I had hoped to be posting this afternoon with the results from my CT scan. But, unfortunately, I wasn't able to have it today. The lady that does my scan called in sick with strep. So they have rescheduled me for tomorrow morning at 8:00. How's that for bright and early? My choices were either 8:00 or 10:30. I took the 8:00 because I can't eat or drink until afterwards. So, I decided to go ahead and get it over with. Plus, I should be able to get the results hopefully by lunchtime.
I just want to know what the deal is. If the abscess has gotten larger than I will most likely have to have another drain put in. My only concern is that in the past the drains have helped to relieve some pressure but the abscess never goes away. When I had my last surgery they cleaned out the abscess. But in under a week it was back. I know this because I was re-admitted into the hospital due to complications and they had to do a CT scan. The scan showed the abscess once again. They are not sure why this continues to be such a problem. Then of course, we have the "desmonsters" (desmoids) as I like to call them sometimes. If the scan shows that the tumors are putting pressure on organs and/or nerves my only options are to continue chemo and pain management, which is where we are right now. My pain level on a daily basis is usually at a 3 or 4 out of 10. That's a good day for me. I have learned to function with that. Today's pain level has been a good 6 or 7. Sometimes I will be going along and my 3 turns to an 8 in a blink of an eye. There doesn't seem to be anything that I do or don't do that causes the pain to be worse. So, I feel sure that it is probably a combination of the abscess and the tumors.
Well, that is enough for today about all of that. I got a card in the mail from a friend that really brightened my day. It was such a beautiful card, the colors. Plus, it was one of the Maya Angelou cards. I really like her cards. So, I wanted to share what the card says.

"You may encounter many defeats, but you must not be defeated. Please remember that your difficulties do not define you. They simply strengthen your ability to overcome." Maya Angelou

I have written in a personal journal something to that effect in the past.
This disease does not define the person I am. But it has changed my life in ways that others cannot understand.

I am very blessed to have such a wonderful, loving family. God has blessed me far more than I deserve also with such amazing, supportive, caring friends. Without all of you, I would not be where I am. Thank you so very much for loving me and praying for my family and me. I pray that God blesses you overwhelmingly. Thank you!

Quote of the day:

I need a faith that nothing can shake. Emphasis on NOTHING. Even when I do not know why, I can endure with a faith like that--even if I never find out why!
Growing Wise In Family Life, page 247

Verse:

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor foresake you.
Deuteronomy 31:6

Tuesday, September 7, 2004 10:41 PM CDT

Surprise!
I thought I would go ahead and post now. Because I have to be at Hillsboro Imaging at 9:00 am for a CT scan. I figured I should update now while I had a chance. I will hopefully hear from my doctor by tomorrow afternoon about what the report says and what he sees in the scan. As soon as I know something I will post to let you all know. I'm just praying for the radiologist and doctor to be able to help me.

Quote of the day:

Faith is not a risk. (What is the risk if you have faith in God?)

Verse:

For we walk by faith, not by sight.
II Corinthians 5:7

Tuesday, September 7, 2004 2:59 PM CDT

Hi everyone!
I hope you all had a marvelous holiday weekend. I have had company with me today...Zach is under the weather. He has a doctor's appointment in an hour. It is probably just viral, but we'll see. Of course, either way it's not a good thing for me. So, I have been Lysoling everything.

I just talked to my surgeon. He agreed with me that a CT would have been a better thing to do for me. So, he is getting one set up asap. He said that if it is the abscess that is growing and causing more pain than we will probably have to do another drain. Or as I call them another accessory on my hip. If the increased pain is due to tumor growth than pain management is my best bet for now. That is until the chemo has a chance to do it's thing. I am praying for shrinkage. I want the tamoxifen to work for these tumors so I don't have to go to any stronger forms of chemo. I can handle the side effects from this. If I hear from my other doctor or get a CT scheduled I'll let you all know.
I have to share this quote with you today. It goes with a verse my friend gave to me today. This is another quote I made up. It really tickled Bennie and me the other day when I just popped out with it. We laughed and laughed.

Quote of the day:

It's not a bad thing....it's just a thing.

Verse:

This is an easy thing in the eyes of the Lord;
2 Kings 3:18

Click on my guest book and brighten my day with a note....please.

Monday, September 6, 2004 8:42 AM CDT

HAPPY LABOR DAY!!!!!!
I hope you all enjoy today and have a lot of fun with your families.
I can see that the sun is shining outside today. I have a window by my desk so I always look out into the woods as I type my post. It's very peaceful to look out into the trees.
Remember to enjoy happiness and treasure joy. Life is precious and each day is a blessing.

Quote of the day:

It is not the length of life, but depth of life.
Ralph Waldo Emerson

Verses:

"Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation."
Psalms 91:14-16

Please click on my guest book and surprise me with a note. Your notes really brighten my day. They are priceless little gifts.

Sunday, September 5, 2004 2:17 PM CDT

Hi everyone.
I'm just going to make a short post today. No doctor news, of course, because it is a holiday weekend. I hope you all are having a great time with your families. Today's post is just an overflowing of emotion for my church family. On our way home from having lunch with friends after church I commented to Bennie and Zach that I feel complete. The source of support and love is so amazing. I feel very blessed and thankful to be a part of this church family. Thank you so very much! I love you all.

Quote of the day:

The storm also beats on the house that is built on the rock.
Unknown

Verse:

You will keep in perfect peace him whose mind is steadfast, because he trusts in you.
Isaiah 26:3

Please remeber to click on my guest book and leave me a note. Your notes are a bright spot in my day.

Friday, September 3, 2004 8:25 PM CDT

It's been a long and somewhat frustrating day. I did not hear from my internist about my back x-rays. I do know that she has the report. But I believe she was taking today off. That is also the case for my surgeon. So, I had to see 2 residents today that had no clue about me. The first one came in and said, "So you have ulcerative colitis." I said, "No." Then he said, "Crohn's." I said, "No, I have FAP." Kind of frustrated me because I felt he should have read just a bit about me before he came in. Bennie was real quick to let him know that I am a complicated case. The residents, after listening to what I had to say, decided that I should have labs drawn and x-rays. I questioned their decision about the x-rays. I felt that it would be more imformative to do a ct scan. They decided against that. I let them know also that I had a temp. Bennie and I went to get the labs and x-rays done. I have to brag on my surgeon's nurse. She is the best ever. Always so helpful and sweet to me. She said to let her know when we had finished and she would give me a call as soon as she knew something. Not long after we finished she called to let me speak to the resident. He said that my labs had come back okay, except two tests were slightly elevated, but not enough to concern him. He said that he felt my increased pain was due to the desmoids. He said that I had chronic pain and should stay on my pain medication through the weekend and follow up with my surgeon on Tuesday. He said that if I spiked a temp (which I already had one in the clinic), pain increased, threw up, passed blood, or so on to go to the ER. Well, I could have saved myself most of a day had I known that was what I would hear. Because I already knew all of that. So, for me it was a waste. I will make it through the weekend and call my surgeon on Tuesday.
I'm going to put that out of my mind though for the weekend. I plan on getting the rest they have stressed I need and taking my medicine as instructed...be a good girl. But most of all I am going to enjoy the long weekend with my family and friends. I hope you all have a fantastic weekend also. Thank you all for being such a blessing to me. Your prayers and support mean the world to me.

Quote of the day:

Happiness comes of the capacity to feel deeply, to enjoy simply, to think freely, to risk life, to be needed.
Storm Jameson

Verse:

Delight yourself also in the Lord, and He shall give you the desires of your heart.
Psalms 37:4

Thursday, September 2, 2004 8:27 PM CDT

* I won't post tomorrow until after I have seen the doctor and have heard about my x-rays report.

Hi everyone!
It's been a long, very tiring day. I started out the day with physical therapy, then saw my internist who sent me for x-rays of my spine. I have been having terrible back spasms that I haven't said anything about until now. They had eased up but unfortunately have returned with a vengence. My internist said because of my bone mass loss she wanted me to have x-rays to make sure I don't have any fractures in my spine. I haven't heard from her yet about the x-rays, hopefully tomorrow. I also talked to my surgeon's nurse because my ever present abdominal/back pain has increased to the point that I have admitted I need my pain medication. That is big stuff for those of you that don't know me very well. The medicine isn't able to take the pain away, but it does relax me, so that is a little bit of help. My surgeon is out of town for the holiday weekend, but he wants me to see the doctor that is covering for him first thing in the morning. I had to promise that if I got to feeling any worse during the night that I would go straight to the ER.
This next part might surprise some of you. I am going to open up and tell you things that I would not normally let anyone know. But I have had a few close friends tell me that I am not being fair to you all by not letting you kow some of this. So this is a big thing for me. I have to admit to all of you that I thought this afternoon, because I have been hurting so badly, knew something had to be done, and also just dealing with this for so long, that I didn't have a smile. For me being able to smile is very, very important. There were only tears. But you know God always knows what we need. Some of you called me this afternoon just to check on me. Some of you emailed me because I hadn't posted and you were a little worried. I had a wonderful visit with some friends this afternoon that really lifted my spirits. So, if you doubt prayers are being answered, like I have said before, just give me a call and I will tell you what prayers God has answered for me today.
I am going to end the post here for now. You know night time is not my favorite anymore because it is almost a frustration for me. Even being extra tired or taking my medicine doesn't ensure that I will sleep more than an hour or 2 at a time at night. So, if you could say a prayer for me to be able to rest tonight that would be wonderful. Thank you all so very much for your continued prayers. Just knowing you all are out there praying for me and the boys is such a strength and comfort. Thank you also for all of your notes on my guest book. They really brighten my day, especially on days when I am whimpy.

Quote of the day:

In the depth of winter I finally learned there was in me invincible summer.
Albert Camus

Verse:

When you pass through the waters, I will be with you; and through the rivers, they will not overflow you. When you walk through the fire, you shall not be burned; nor shall the flame scorch you.
Isaiah 43:2

Wednesday, September 1, 2004 7:52 AM CDT

Good morning!
Some of you emailed to check on me because I didn't post yesterday. Thank you for thinking about me. You know your notes and email always brighten my day. They are such a strength and encouragement to me. Well, I have been struggling since we went to Texas. I haven't been able to bounce back and now there are some new issues that I will have to talk to the doctor about today. So hopefully I will have news later. I have physical therapy today and I just have to say...I am whiney. So, I guess today is a good day to wear one of my favorite shirts. My mother bought me this shirt and it always makes people laugh. The shirt reads, "Put your big girl panties on and deal with it.". It's a saying that I have. It tickles me and makes me smile. Anyway, perfect day for that shirt. Thank you mother for giving me that "sunshine".
Well, I am going to stop here for now to get ready for PT. I'll try to post later if I have any news. I hope you all have a wonderful day!

Quote of the day:

"Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy."
Thich Nhat Hanh

Verses:

Therefore, since we have been justified through faith, we have a peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
Romans 5:1-5

Monday, August 30, 2004 11:59 AM CDT

I am posting for the second time today, as promised. For those of you that didn't see the earlier post it is in history. I have new pictures also in the photo spot.
Today is a trying day for me. I have made calls to several of my doctors because I am not sure what is going on. For me it not just a simple, "I've got a stomach ache.". I'm a little more complicated than that. I try to take care of stuff, but sometimes you just have to make the calls. I have to admit right now I kind of feel like I am dangling out there. It's at times like this that I feel like the ever present "problem patient". My doctors have assured me that is not true. They tell me that I am a patient with a chronic illness and there is a difference. It just gets tough at times. The human spirit has a natural need to be well. So, I just pray a little harder on days like this and I also listen to my music (thank you Thomas & Leah).
Well, my endocrinologist just called and advised me what to do and what to watch for. He wants me to triple my hydrocortisone for the next couple of days to see if that will help and let him know how I am by the middle of the week. He was very helpful.

Quote of the day:

Pray with perseverance and expectancy.

Verse:

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.
James 1:2-3

Monday, August 30, 2004 4:03 AM CDT

Okay, I have changed the pictures. That is the only disappointing thing about this web page. You can only put 3 pictures on at a time. But then, I guess it gives everyone something to look forward to...new pictures. I will switch them every couple of days. That way hopefully you'll have a chance to see them before they are changed.

This morning, and yes, I realize it is early morning, for those of you that like to keep tabs of my sleep or lack of I should say, I want to say thank you to all of you that have written in my guest book. You just can't imagine what a strength and encouragement your notes and emails are to me. Like I have posted before, they are little treasures to me. Thank you so much for taking the time to brighten my day. Thank you also, for your continued prayers. I will add to the post later this morning.

Quote for the day:

There are always two choices, two paths to take. One is easy and its only reward is that it is easy.
Unknown

Verses:

"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them."
Matthew 18:19-20
I hold firmly to these verses because I know we are all praying together.

Saturday, August 28, 2004 6:04 PM CDT

This week has been a tough one for me. I asume it is a combination of things; the trip to Texas, my medicines and so on. My energy level has really taken a nose dive. But enough whining.
Today's post actually has a title.

Glimpses and Blessings
This is what I call this. I have had this happen for many years. It's like a little check from God. This happened in Texas. I have told some of you already about this. Bennie and I were walking out of the hotel the morning we were leaving. There was a man that was evidently just arriving. I have to tell you this, everyong that stays in this hotel is either a patient or family member, so you know someone is ill. But anyway, this man was a well dressed man, dress pants and a golf shirt. Nothing out of the ordinary...that is until I saw that his right foot was at the same level as his left knee. He had a shoe on that foot with a metal stilt to make up the difference. When I see these glimpses, as I call them, I always stop and say a quick prayer. Thank you God for showing this to me. Thank you for this person that is out, unable to hide for a moment their illness or disability. Thank you for blessing me, that if someone did not know me they would not be able to tell that I have this disease. These people that are my glimpses can't get away from this a moment in their lives. I have seen a lot of glimpses in my life and each one I remember and have a story for. They are very important reminders and lessons.
Well, that is really all I have to share today. I hope you all are having a wonderful weekend.

Quote for the day:

Most look up and admire the stars. A champion climbs a mountain and grabs one.
Unknown

Verse:

Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction,faithful in prayer.
Romans 12:11-12

Please click on my guest book and leave me a note.

Friday, August 27, 2004 4:45 AM CDT

Time for a new entry. It's quiet here for now because everyone is still asleep. I don't sleep for very long stretches at a time. I may fall asleep for an hour. Then wake up and be awake for anywhere from 1 to 3 hours before I fall asleep again. So I get about 4 or 5 hours of sleep at night.
I decided to post about dealing with the adrenalectomy today. You know the doctor can tell you what to expect from the surgery, about recovery, and followup. But he can't tell you what it feels like and how it is to learn to cope with the changes. We don't realize on a daily basis how much our adrenal glands help us, even with the smallest of situations. They are so small, and sit on top of your kidneys. Until this happened with me, I never really gave them any thought. Now, though I am anxiously waiting for my right gland to wake up and start doing it's job.
Everyday, all day long these glands help you deal with life. Your adrenal glands produce cortisol, which is your stress hormone. When you get sick or are in a stressful situation the adrenals automatically produce more of this hormone to help you deal with these things. This has been quite a learning experience for me. Getting use to the differences after the adrenalectomy have been tough. Going to Texas and having all the stress of the trip was hard. Each day, the simplest stresses we don't really think about, because our bodies are such wonderful creations. They just deal with what is going on. But now I only have the amount of coritsol (hydrocortisone) in my body that I
take in the morning. So, extra stresses, ones that normally you might not think about too much, because your body just handles it, really work on me. That's why, when I got home from Texas I was so drained. I have said that my brain actually hurt, my body felt like someone had beaten it with a bat, and I was too exhausted to talk. I got Bennie to talk to most of you that called for a couple of days. I just didn't have the energy. But I am feeling better.
When we were in Texas, after the nurse had come in to talk to us, I tried to explain to Bennie what I feel. He had said that he was sorry for talking over me to the nurse, but he just wanted to make sure I didn't forget anything (chemo brain, you know). This was the perfect opportunity to try and I do mean try, to explain to him what is going on inside me. I told him that sometimes it's tougher for me to deal with a lot going on at one time because it's so overwhelming. When this happens I zone myself out or walk away from the situation. I get to what I call my "Safe Zone". It's hard for me to try to put into words what this is like. But I do know that it's just one day at a time and each day gets me closer to the one where my right gland will wake up and start working for me. For now it is a Sleeping Beauty...ha ha.
I had hoped I would be able to do a better job of putting this into words.
I hope you all have a wonderful weekend!

Quote for the day:

Choice not chance, determines ones destiny.
Unknown

Verse:

The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.
Psalms 28:7

I almost forgot (chemo brain). I have pictures now. I can only show 3 at a time. I had hoped that I could put all of the Saturday pictures up at the same time. But that just gives you something to look forward to. I try to remember to change them every day or two so you have a chance to see them.

Thursday, August 26, 2004 10:06 AM CDT

Good morning.
I am looking out the window as I type. What a beautiful, calming sight...the sun shining through the trees as a breeze blows the limbs slightly. What a wonderful day! I have been listening to my praise and worship music (this is how my day gets started). Music is and has been a huge comfort to me through this. It really ministers to my soul.

Okay speaking of music, I am posting about the concert today. For those of you that could not make it, let me just say it was AMAZING! Lindsey, Kendra, Matt and Thomas all gave so freely of their talent and time. I am so thankful for their sharing.
Lindsey could not have known before Saturday night, but the second song she sang, "If You Want Me To", is a very special song to me. I have listened to that song more times than I can count. It is a song that I truly feel. There have been times through this journey that I have been at my lowest, physically and emotionally, and I have prayed and listened to that song. Those times are hard, but they are the times when you truly understand "Footprints in the Sand".

Anyone that knows me knows that I think Thomas and Leah (his wife) are the best! For those of you that asked, yes, they do have cds. The best money spent. Let me know if you would like one.
I have to tell you all that I am so very blessed in so many ways. One of the ways is the music ministry that Thomas, Leah, Matt, and Kendra have shared with me. They have been so wonderful. They came (a couple of times) while I was in the hospital to sing to me. The nurses and patients all enjoyed it. Some of the nurses actually stood outside of my door to listen. We, of course, left the door open so others could enjoy it. They have come out to our house to sing for me. Then they gave this wonderful concert. I am blessed in more ways than I can put into words.
The whole Saturday was a wonderful, memory filled day. I have pictures that I am going to try to post of the day. Wish me luck on that.

Texas....yes, I did say that I would post more about Texas. The trip was educational. Some would say that all we heard could have been said over the phone. But if that had happened than someone might have thought that they didn't want to take the time to see me. That was definitely not the case. The doctor and nurses spent a great deal of time with Bennie and me. Most of what he talked about I already knew. But there were things that Bennie needed to hear and it was best to come from the doctor. Yes, I did get a spanking and learn a lesson about pain management.
The doctor called yesterday to let me know that he and a group of doctors had met and gone over my films. There was definite growth in the tumors from April to August. But no growth from July to August. So, he wants me to continue the Tamoxifen and have a CT scan in 2 months. Hopefully at that time we will see shrinkage.

Okay, I have talked enough about that. I know that is what this page is for. But I have to tell you something I am excited about. Now I am talking about my Zach. When he came home from youth last night he couldn;t wait to tell us about what they had talked about. He showed us a rock with John 8:7 written on it. This visual really made an impression on him. He put the rock in his backpack along with his bible this morning. He has been carrying his bible everyday to school. He said that he reads it whenever he finishes his work. I say that I am blessed because of his strong, eager little heart. To be 12 (he says practically 13, mom) and be such a witness. There are blessing everyday, some days you just have to look a little closer.

I have rambled on long enough. I hope I haven't put you to sleep. I have already typed this once and before I could save it I got kicked off and lost everything. So, I had to retype.

Quote for the day:

Of all the things you wear, your expression is the most important.
Unknown

Verse:

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11

Please remember to click on my guestbook. Leave me a note and brighten my day.

Wednesday, August 25, 2004 1:23 PM CDT

I have decided to post about Saturday this time. Because of how busy and hectic things were I didn't really have a chance to do that before we left for Texas. I am still very overwhelmed by the love and support you all shared with me. I can't think of a better way to spend a Saturday than the way we did. What a day of fellowship we all had. I have thought and laughed about the kids and how much fun they had just being together and laughing, and later on soaking each other (the teens), while the younger ones basically got their Saturday bath at the car wash. Isn't that just one of the many reasons we love living in Kingston Springs? I know it is for me. If people doubt community spirit and support (I think I might have already typed this before. But it is worth typing more than once) than they were not in Kingston Springs or at Charlotte Road Baptist Church on Saturday. When I arrived Saturday morning I was amazed by the number of people already there. For those of you that were there (on Saturday when you could have possibly slept in) thank you for your sacrifice. For the ones that baked and/or worked that day thank you for giving up your day. Thank you also to the hard working children at the lemonade stand (moms, too). And what about those guys on the grills? The smells coming from those grills were enough to make you hungry. Thank you for your hard work. For those of you that gave to this your generosity is overwhelming. I have been told by many that this is another lesson, and I know how those are, some you learn quicker than others, some you have to get beaten into you. Every single one of you are the most wonderful gift to me. I am blessed to have you in my life. I do not say that flippantly, I mean this from the bottom of my heart. God has blessed me with a wonderful family, friends, community, and doctors to travel in this "journey".
I am going to stop here for now about Saturday. But in the next entry I will post about Saturday evening. Then we can move on to the rest of the Texas trip.
I did hear from my doctor in Texas this morning. They have already had the conference about me. More on that later...

Quotes for the day:

Being challenged in life is inevitable, being defeated is optional.
Roger Crawford

If you want the rainbow you have to put up with the rain.
Unknown

But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Isaiah 40:31

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my right hand.
Isaiah 41:10

One more thing.....
Your notes are an incredible strength to me everyday (especially when I was in Texas). Thank you for taking the time to post a note in my guest book. They are like little presents to me...and they don't cost a thing...but I treasure them like gold.

Tuesday, August 24, 2004 8:00 PM CDT

I am HOME!
The past two days have been physically, mentally, and emotionally exhausting. I am still working on the words for our trip to Texas. It might take me a bit to get it all in the journal. So here is the first part and we'll see how far I get.
The trip was hard right from the start. I wanted to be home before I even left. It started out with trying to get the last minute things together before we left, get Zach where he needed to be, get to the airport, Bennie wasn't feeling well, I needed to take my medication, and so on. I usually take my medicine between 6:30 and 7:00 am. But it was 8:30 am before I got to take it. That makes things a little trying for me because one of the medicines I take in the morning is my hydrocortisone, very important.
Let me get back on track, the flight to Houston was long and hard. I am sorry to sound like sure a whiner, but I can't even adequately put into words all that happened and how hard it was from start to finish. The words just aren't there for that. So I am going to try to put into words what the doctor talk to us about.
I will begin by saying prayers were and are being answered. At first Bennie was very upset and almost angry. I was kind of numb, exhausted, and trying to smile and find the positive in making this trip. The doctor and nurses were all wonderful about discussing things and making sure we were okay before we left. Bennie says as okay as we can be. As you all know, it was a major deal to get an appointment. It took a few months, a lot of phone calls, and work. So, we left prepared for whatever they decided was necessary.
The doctor explained a lot of things to Bennie (things that he needed to hear) about my syndrome. You know Bennie is a fixer and this is just not something he can fix, so he has to find answers. The dr. said that I have not been on the tamoxifen long enough just yet to know if it will work. But even if it doesn't work I have to be off of it for at least a month before I can start something else. He said that this chemo is less toxic than many others and we don't want to jump around to others because you can't go back to Tamoxifen. The others that he named all have a lot of hard side effects, things I don't need to have to deal with if not completely necessary. He said that he wanted me to have a CT scan of the abdomen/pelvis in the next month or two and also a MRI of the neck. He has my last four abdomen/pelvis CT scans and will present them at a conference of oncologists, surgeons, and radiologists to see what they decide as a group. I should hear from him about that in about 10 days. He talked to Bennie about the desmoids because Bennie was very concerned that the radiologists had not seen the mesentery desmoid. The dr. explained that desmoids and scar tissue look very similar. They are both very fiberous. He also said that the inside of my abdomen looks like a battlefield. I am at as great of danger of a bowel obstruction, that if not properly taken care of can be fatal. A bowel obstrusction can be caused by the desmoids and/or scar tissue, because the scar tissue acts kind of like cement. Normally your organs can move around, mine cannot. So, diet, fluid intact, close monitoring is a must. The dr. also said that this is just part of this syndrome and what we had been through in the past year and a half is part of it. He said that life will not ever be like it was before all of this. But you know that is true for everyone. None of us are like we were 5 years ago, that's a part of life.
Well, my brain, body, and heart are exhausted. I am going to stop here for now. I have not done a very good job of getting this down in words. But after some rest I will try again. Thank you all for continuing to pray. Please remember prayers are being answered. I told Bennie God did answer prayers in Texas. But we all know that sometimes God's answer is different than what we think it should be. But He knows what is best. And as I have said before, He doesn't make mistakes.

Quote for the day:

Our real blessings often appear to us in the shapes of pains, losses and disappointments; but let us have patience, and we soon shall see them in their proper figures.
Joseph Addison

Verse:

I can do all things through Christ, who strengthens me.
Philippians 4:13

Monday, August 23, 2004 5:58 PM CDT

Hi everyone.
Well, we have just finished with the doctor. It is 6:00 pm and we are physically, mentally, and emotionally exhausted. How's that for honesty. We are coming home tomorrow. We will be back in good ole Tennessee by 6:30 pm. So, in a little more than 24 hours we'll be home. I (we really) are still trying to process what we talked to the doctor about. I know you all are patiently waiting to read and hear. Please give me just a little bit more time to get my thoughts together....the words aren't here yet. Please know that I know prayers are and will be answered. I love you all and I am so thankful for your prayers.

My quote for today:

You can ALWAYS find a positive in any situation.

Verse:

Trust ye in the Lord forever, for in the Lord, Jehovah, is everlasting strength.
Isaiah 26:4

This is my personal favorite and has been for as long as I can remember.
Please click on my guest book and leave me a note. Your notes mean the world to me and really lift my spirits.

Sunday, August 22, 2004 11:32 PM CDT

"Enjoy happiness, treasure joy", is what I think of when I think about Saturday. I enjoyed every moment of that day, and I treasure every memory. What a way to spend the weekend before I head out for Texas. Well, you know I am going crazy trying to get all three of us packed and get things in order before we leave. My post tonight will be short because things are crazy. But, I will post tomorrow after Bennie and I have met with the doctor. Please remember to pray for Bennie, Zach and me, plus, my doctors.

Quote:

"Enjoy happiness, treasure joy."

Verse:

Every day I will bless You, and I will praise Your name forever and ever.
Psalms 145:2

Please click on my guest book and leave me a note. Your notes really brighten my day!

Friday, August 20, 2004 12:37 AM CDT

Well, it's Friday. Tomorrow is the big, exciting day.
I went to physical therapy this morning. I didn't want to go, felt really yucky. Some days are worse than others (nausea). But I went and made it through...even got a star by my name..ha ha.
I joke about having "chemo brain" all the time, because my memory is shot. I say it's a combination of anesthesia and chemo. I have had to go to Bellevue 3 times this week for PT and have forgotten that I needed to pick up my contacts each time. My opthamologist is in the same building as my PT. Today I wrote myself a note and do you know that I almost drove out of the parking lot before I remembered. So, thankfully I remembered and have my contacts for Texas.
The other day I was asked if I could wish for something would I wish never to have had FAP. You know I've known the answer to this question for a long time.
No, I would not. The reason is that FAP is a part of what makes me....me. God had a plan. He doesn't make mistakes. We just have to trust in Him. Now I won't say that it's an easy road. Just ask Bennie. You know it's not just me that it affects. My whole family has been and is affected by this. I tell Bennie and Zach all the time, we are a team, what affects one of us affects all of us. I am very fortunate and blessed, yes, blessed to be surrounded by such a loving, supportive family and the kindest, supportive group of friends and community. Everyday I am amazed and blessed. Thank you to all of you.

Quote for the day:

Experience is not what happens to a man. It is what a man does with what happens to him.
Aldous Huxley

Verses for today:

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him,, and he will make your paths straight
Proverbs 3:5-6

Please remember to click on my guest book and leave me a note. It really makes my day!

Wednesday, August 18, 2004 3:00 PM CDT

Okay, I have promised myself and God that I would be as open and honest as I can about all of this. Because I've said from the start, if just one person is helped by this, I consider it all worth it. Well, I know personally of more than one person that has told me they have been helped. So everything else is just a tremendous blessing.
I hope that you all realize that I don't sit down to post a journal entry until the words, quotes and verses come to me. It just seems to flow. I post from my heart so my feelings are out here in the open.
Today's post is a surprise to me. I had not intended to say anything about it. But I feel that it is important to share this. I had an appointment today with HPI (Hair Prosthesis Institute). This was just a consultation. No, I am not losing my hair. But Bennie and I thought that it would be smart to have the consultation just in case my chemo were to be changed and I do lose my hair. I have been just fine with this, no big deal, probably won't need it was my kind of thinking. So, I'm there and the lady (very sweet) measures my head, takes pictures of how I wear my hair and then she takes out her scissors. She cuts a piece underneath and a piece on top for my file. This is so they can match my hair color exactly if I need a wig. Well, do you know my eyes filled with tears when I saw my hair taped on the paper. But the tears did not fall. Then Ann (the sweet lady) said that she was going to go ahead and print out the contract for me to sign. She said that it in no way obligates me, that it will just speed things up should I need a wig. Well, I sat there while she was entering everything in the computer and printing out the contract. While I was sitting there I just knew that I couldn't sign it. So, when she handed the contract to me I told her that I needed to talk to her. I told her that I had been praying about this and I knew that it was okay for me to be there for the consultation, because I believe it was another learning lesson for me. But I told her that I couldn't sign her contract because it would be saying that I didn't believe God would answer my prayer. Do you know tears came to her eyes and she said that she understood. We shared about our faith and she gave me the biggest, longest hug. Then with tears still in her eyes she gave me her card and said that she hoped I never called her for a wig. Then she hugged me again and said to promise to call her to let her know how I am doing. Something that started out to be no big deal, then became kind of emotional, ended in such a blessing for me.

The quote for today comes from the pastor of a very special friend of mine.

"You're not lucky. You're blessed."

This really made an impression on me because I thought about how often we say or hear someone else say, You're so lucky!". When truly we are blessed and to say we are lucky demeans the blessing.

The verse for today:

Thank God that he gives us the victory through our Lord Jesus Christ.
I Corinthians 15:57

Please remember to click on my guestbook and leave me a note. They really brighten my day.

Don't forget.....Saturday is a huge day out here in Kingston Springs: Chicken/Rib Roast, Lemonade stand, Carwash and Bake Sale. Then the concert that night. I know I have already posted it, but I am SO excited!

Tuesday, August 17, 2004 3:58 PM CDT

Hi everybody!
I have to start by saying I have had a very uplifting day today. In so many ways friends have blessed me today. Earlier today one of my friends introduced me to an incredible woman who shared her testimony with me. It was a very special time. Then a friend gave me a bracelet that a cousin of hers sent to her to give to me. I have never met the cousin. I've had numerous phone calls today from friends checking on me. Then, of course, there are the friends that are working so hard right now to get everything together for this Saturday. All of this just amazes me. I am so overwhelmed by the kindness, sharing and support all of you have given me. This is a precious gift to me and one that came at just the time I needed it. Words cannot express my mix of emotions. So I will say.....THANK YOU. And GOD BLESS YOU.

Well, I have the CT report in my little hands now. I am very anxious to talk to one of my doctors because I have questions about what I read. There are things in it that I had no clue were issues. My oncologist said that he would set up a neck, abdomen and pelvis CT scan for 3 months and see me also that same day. In my mind I just responsed, that's okay I'm headed to Texas next week. To me, waiting for 3 months to scan again is too long, especially with the desmoid I have in the mesentery. But I could be wrong. So, I will want to see what my doctor has to say and then of course, there is Texas. A few of the things that are in the report are: numerous gallstones, enlarged pancreas, and at least 3 (yes, I typed 3!) masses in the abdomen. The report says that there is not an appreciable change in these masses since the last study. It also mentions osteopernia. I talked with the nurse that did my hormone bloodwork and guess what? She said that now my hormone levels are non-existent. So, she is setting an appointment for me to see an internal medicine doctor that specializes in osteopernia and osteoporosis. I have to have a bone density test. Then they will decide what to do to stop the bone loss.
That is enough about medical things for now. I just keep thinking about Saturday. I am so very excited about it. I pray that things go smoothly and that we all just have a wonderful day of being together and fellowshipping.

Quotes of the day:

The greater the obstacle, the more glory in overcoming it.
Moliere

The dedicated life is the life worth living.
Annie Dillard

Verses for today:

Trust in the Lord with all thine heart, and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy path.
Proverbs 3:5-6

Monday, August 16, 2004 9:34 PM CDT

Hi. I know it is late and you have all been patiently waiting to hear how today went. It was a long and tiring day. At first I thought I would have to wait until in the morning before I would be able to post in my journal. But here I am.
Well, I will begin by letting you know I didn't go to physical therapy today. I knew that to try to do all of that in the space of time it was set up would be more than I could handle. I am learning...slowly.
I went for my CT scan and then on to the oncologist. They also did blood work before my CT since I am on chemo. The written report wasn't ready, so the doctor looked at the scan on the computer with me. He said that we would know more when the report was ready. But from what he saw it looks like the desmoid on the right side has stayed the same, which is okay. The one on the left side (mesentery) looks to have decreased in size just slightly. He said that I still have the fluid collection, but there appears to be no fistula. I am so very thankful for that. He did say that my bone density is too low for someone my age, that I am in danger of osteoporosis. There are a number of facts that could have caused this....nutritional issues, estrogen levels, medication and so on. So he told me to take two Tums a day for calcium.
Hopefully, tomorrow I will be able to get the report and then I can update. I am really tired tonight and my pain level is up there. I am ready to meet these doctors in Texas to see what they have to say. We are in the finally countdown...a week from now I will be in Texas.

Quote for the day:

In the depths of winter, I finally learned that there was in me an invincible summer.
Albert Camus

And I have to add this one.

I bend, but I do not break.
Jean de La Fontaine

Verses for today:

Psalms 121:1-2

I lift my eyes to the hills - where does my help come from?
My help comes from the Lord, the Maker of heaven and earth.

Please click on my guest book and leave me a note.

Sunday, August 15, 2004 9:16 PM CDT

I know, I know, a late journal entry today. Or should I say tonight. I wasn't going to post, but then decided I should to ask you to please say a special prayer in the morning. I have my first physical therapy session, then my first CT scan since starting chemo and I see the oncologist after that. I am praying that we will already be able to see shrinkage in these tumors.
Tonight's post is going to be short. It's been quite a long day for me. I will post tomorrow afternoon to let you know how everything went. Thank you for your prayers.

Quote for today:

Love cures people - both the ones who give it and the ones who receive it.
Karl Menninger

Verse:

Cast all your anxiety on Him because He cares for you.
1 Peter 5:7

Please remember to click on my guest book and leave a note. Your notes really boost me up and brighten my day.

Saturday, August 14, 2004 10:12 PM CDT

Hi to all of you.
I know it is kind of late to be doing a journal entry for today. But I decided to do a little one. First of all, let me start by saying, "What a glorious day God gave us!".
I don't think it could have been a better day.
I am trying to use this journal to first of all, keep everybody informed about what's going on and second of all, for me. I am slowly learning and trying to understand myself. I say that because after having gone through all of this and still with more to come the normal human reaction and response is to try to get your life back to what you called "normal". Well, it has been quite a long while for me. Everyday I try to do as much as I can to feel like "Life before this began". My mother says that this truly began when I was 8 years old. That is the first time I had to go to the doctor for this syndrome. But the last 3 years (and very much the last 1 1/2) have been very tough ones. I find myself now thinking through if I have the energy to do some things. Things I use to do without a thought. Now instead of having a full day of that kind of stuff I will pick one thing. But that is okay, it is part of the journey and the learning experience. Enough about that. Now for what I really want to post about.....

I'm getting very excited about next Saturday. It is going to be an incredibly awesome day. I can't find the words to adequately express my gratitude for all the kindness, thoughtfulness and hard work all those involved have put into the chicken roast, lemonade stand and concert. Not only will we be able to have full stomachs and quinch our thirst but also have our hearts and souls ministered to that night at the concert. If you can possibly come to the concert, please DON'T miss it. These two couples have ministered to my heart and soul this entire time. Their musical gifts are beautiful. I promise you will be glad that you came. Plus, it will be kind of like a party before I fly off to Texas. I can't think of a better way to spend a Saturday night, with a bunch of friends and some beautiful music.
Well, I have to say thank you to my buddy, Helen. She surprised us with tickets to the Titans scrimmage game tonight. Bennie, Zach and I went and had a wonderful time. Thanks so much, Helen, for thinking of us! We had a great time!
Please don't forget to go to my guest book. Leave me a note...brighten my day.

Quote for today:

There are some things you learn best in calm, and some in storm.
Willa Cather

Verse:

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perserverance.
James 1:2-3

Friday, August 13, 2004 2:33 PM CDT

Hi everyone!
I hope you are having a beautiful Friday. Well, today there were no doctor appointments...YEA! On Monday, I have a busy day. I go for my first full physical therapy session at 9:00 am, CT scan at 11:00 am, and appointment with my oncologist at 1:00 pm. I will be a whipped gal by the afternoon. This CT scan will be the first official one since starting chemo. Lets all band together and pray that God's hand is already working in shrinking these tumors. Wouldn't that be the best way to start out the week?

Now I have to post about the incredible people in my community. Bennie and I have always loved living in Kingston Springs. It reminds me of where I grew up, lots of wonderful memories. We wanted to have that for our children. We can't tell you enough how much we love living here. I do have to say that I am amazed and overwhelmed by the love and support of our community. You not only have shown how much you care and are praying for us, but you have also passed it on to build a larger prayer circle. I thank you for do that.
I hope you all have a wonderful weekend. I think it is going to be a pretty one for us.

Quote for the day:

Our strength grows out of our weakness.
Ralph Waldo Emerson

Emily, if you are reading this, I had to put that quote after the one you gave me in the guest book. I love you. Thank you for your strength.

Another quote:

The future belongs to those who believe in the beauty of their dreams.
Eleanor Roosevelt

Verse for today:

Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.
Joshua 1:9

Thursday, August 12, 2004 4:45 PM CDT

Hey!
For those of you in the Nashville area, has it not been a beautiful day? It lets us know that Fall is just around the corner.
Well, today, I went to have blood drawn to have my hormone levels checked. I joked with the girls there and said that I could save them some time and just stick myself. Surely, by now I am qualified...ha ha. I should know the results from that Monday or Tuesday. Don't ask me about physical therapy exercises just yet. I think with the number of exercises and times I have to do them this could be a full time job for now.
That's all for the doctor/medical on this post. The rest is just going to be stuff.
I have to tell all of you that are reading thank you. I am saying thank you because you all have and are strengthening me with even the smallest of gestures. The simple wave you might give me as we pass in our cars, stopping by to talk to me when we are out, a phone call, email...all the way to offering to volunteer a chicken roast and a benefit concert to raise money for my medical expenses. Of course, I can't leave out my sweet little FBI buddies; Bailey, Haley, Chandler, Carter and Henry, that are having a lemonade stand for me.
I am so very blessed to have all of you for my friends. I thank you from the bottom of my heart. Everyday I am amazed that someone would do these things for me. I just can't put it in words.....because thank you just doesn't seem to be enough.

My saying for today is not really a saying...more like just a thought from me.....
Give one extra person a smile, say something nice to someone for no reason at all and then watch their face light up.

Verse:

The Lord will stand with me and strengthen me.
2 Timothy 4:17

I had to add this one.

I have heard your prayer. I have seen your tears; surely I will heal you.
2 Kings 20:5

This last one has been one I have clung to. Today I spent a little bit of time reading back through some of my journal from the start of this (Jan. 2003). Some parts were very hard to read, while others I was very thankful for. This is still "My Journey" and I know it has a purpose.

Please remember to check out my guest book. Your notes really bright my day.

Wednesday, August 11, 2004 10:24 PM CDT

Okay, here's the news about my physical therapy session. My therapist said that I have very noticeable range of motion problems and weakness with my neck, arm and shoulder. She worded it differently, but as those of you close to me already know, I am having a bit of trouble with my memory since this last surgery. Of course, she gave me a BUNCH of exercises to do at home and I go for therapy 3 times a week.
Now on to the exciting stuff......
My buddy, Brenda, called today to let me know that the Chicken Roast had been set up for Saturday, August 21st, that is the afternoon before the concert. It should be a full, busy, but exciting day. Just what I need to keep me from thinking about Texas too much.
Another thing I have to tell you. Some of the sweetest children have decided to have a Benefit Lemonade Stand for me. These are some of the kids that were a part of our FBI (Fantastic Bible Investigators) that we had on Wednesday nights in our community for the 2 years prior to my surgeries. I really miss being able to have that. These children were and are still a blessing to me and have a special place in my heart.
I continue to be overwhelmed and amazed at the kindness and love you all share with me. Thank you so very much!!!!!!

Okay, my buddy and I decided the quote this time would be from one of our favorite speakers at a conference we attended. Her name is Jan Silvious. If you have a chance to hear her, she is great.
"Big girls say what they mean, and mean what they say."

Verse:
My comfort in my suffering is this:
Your promise preserves my life.
Psalm 119:50

I have to thank all of you for the wonderful notes you are leaving me on my guest book. They really brighten my day. And on days like I had today, those notes are a much needed bright spot. Thank you for your prayers.

Wednesday, August 11, 2004 8:32 AM CDT

Hi everyone!
I do have an appointment today. I go for my first physical therapy session for my neck, shoulder and arm. This is for the surgery I had on my neck 9 weeks ago. I'll let you know how that goes.
Okay, this morning I am going to try to open up a little and post some of how I feel. I don't like to talk about it because it's just easier to say, "I'm okay." or "I'm fine." But some of my friends have said that isn't fair to say.
This morning is a pretty good one so far. I consider it a good start when I wake up with just slight pain, about a 2 or 3. Most days, I range from a 7 to a 9. You know the pain scale the doctor gives you...1 being the least amount of pain to 10 being the worst pain you can handle. There isn't any one thing I do that makes the pain worst. Sometimes I can just be standing around talking to friends and the pain hits so hard it makes me want to curl up in a ball. Some days I wake up to a level 6 or 7. Those are very tough days. Sometimes I make it half a day before it reaches that level or more. The pain issue has been a constant since this all began with the first surgery January 2003. The desmoids and abscess are a big part of this problem.
Okay that is about all I can handle openning up for now. That was pretty hard. But a friend of mine said that it is important because people see me and the outside picture looks good. People comment about how great I look. But it's the inside that is a total mess. You can't see that. But I feel it and live it every day. Hopefully, I will be able to get some relief soon. Please continue to pray. Your prayers are a huge blessing.

I am looking forward to the concert on the 21st (that's Saturday, August 21st at Charlotte Rd. Baptist Church at 7:00 pm). Don't miss this opportunity to hear Thomas & Leah and Matt & Kendra. Their music will bless your heart and soul.

I have two quotes for today. I like them both so much I couldn't do just one.

Enjoy happiness; treasure joy.

Happiness comes not from having much to live on, but from having much to live for.

Verse for today:

The Lord of peace Himself will give me peace always in every way.
2 Thessalonians 3:16

Please remember to check out the past journal entries and sign the guest book.

Tuesday, August 10, 2004 8:26 AM CDT

Good morning!
Okay, so today I will educate you a little more about FAP (Familial Adenomatous Polyposis) as known as Gardner's Syndrome. FAP is a rare genetic disorder. It occurs in approximately 1 in 10,000 people and accounts for an estimated 1% of all colorectal cancers.
There are many other complications associated with FAP?Gardner's Syndrome. These include: skin cysts, dental abnormalities, retinal spots (CHRPE), osteomas of the mandible, skull, & long bones, adrenal & pancreatic tumors, desmoid tumors, gastric & duodenal polyps, and other neoplasms of the brain, thyroid, bile duct and small intestine.
Well, that is enough for today. Don't want to overload, just educate. For those of you that are wondering what CHRPE stands for...I'll tell you in my next post.

Here's a quote for today.

"Our greatest security comes from knowing the peace of God through prayer."

This was a part of my devotion today and I had to share it with you.

Verses for today:

Isaiah 41:10 & 13

Please remember to go to my guest book and leave a note for me. You just don't know how much that brightens my day. It is such a blessing and strength to me. Remember to click on the preview button after you type your message. You have to do that before it will let you add it to the guest book.
Thank you for your continued prayers for my family, me, my doctors and most important, God's will in this. Everyday prayers are being answered.

Monday, August 9, 2004 9:27 AM CDT

Good morning everyone!
Well, I just got the call.....the result is in....
My cortisol level is 1.1. The doctor said that basically there is no change, still non-existent. So, he wants to wait 6 weeks to test again. He said that there is no way to know how long my right adrenal gland has been asleep. Also, that most likely it will take 12 to 18 months before it will wake up and function again.
Well, I am going to stop here for now. But I will leave you with a quote that a friend of mine has at the bottom of his emails.

"Life is not measured by the number of breaths we take...
But by the moments that take our breaths away."

I really love that!

Of course I can't leave you without a verse....
Mark 11:22-24

And I have to tell you this great news...
Zach went on a youth retreat this past weekend. He was saved while he was there. When he was 8 years old he took the steps to be saved. But at the retreat he told us that he fully understood and knew beyond a doubt that he was saved. This is just another way that God's hand is in all of this. Everyday I wake up and wonder what prayers He is going to answer today. Not will He answer one.
I have to say a special thank you to some wonderful people that worked really hard to make the weekend such an incredible time for these kids...Bill & Kathy, and Jerry & Margie. Zach has talked about you all and how great you are. But I already knew that. Thank you so much!!!!

Please leave me a message on my guest book. All your notes really brighten my day. Thanks for taking the time to do that.

Saturday, August 7, 2004 7:34 PM CDT

Hi. I hope you all are having a great weekend. How could you not with this wonderful weather?
Well, by now I'm sure you all have guessed that I didn't hear from the doctor about the result from my blood work. So, I should know on Monday sometime. I thought I would use this journal entry to tell you a little about desmoid tumors. Some of you have said that you thought it would be a good thing for me to do since they are so rare.
Desmoids are benign growths of fibrous tissue that form either spontaneously or after surgery. But don't let the benign part fool you.
Desmoid tumors, an extracolonic manifestation of FAP (Familial Adenomatous Polyposis) occur in approximately 10% to 20% of patients with FAP. The risk of developing desmoids tumors is 852 times greater in individuals with FAP than in the general population.
Although it grows slowly and follows an indolent course, it is the leading cause of death in patients with FAP since they become symptomatic by mass effect on adjacent organs and by extensive infiltration of surrounding tissues.
Even if surgical removal is possible, the rate of recurrence is high.

On to another subject. Please remember to go to my guest book and sign it. I want to thank all of you that have signed so far. Everytime I check it and see a new note it's like a little present. You can't imagine how much it brightens my day. Thank you so much!!!!!

Friday, August 6, 2004 11:04 AM CDT

Hi everyone! I am so glad that it is Friday. I'm glad also that I have already been to the doctor and had my bloodwork done. Now we just have to wait for the result. Dr. Parks said that it will probably be Monday before we know.
So, about the doctor visit. He told me that my result for my cortisol level for last month was barely a 1, which is basically non-existent. The normal level for cortisol is 18 to 20. Before my adrenalectomy my cortisol was 8 to 10 times the normal amount!
I have to go in for bloodwork every month until my level reaches 12. Once it reaches 12 there is a special test he will do to check it further. Dr. Parks said that it will most likely take 18 months to get the right adrenal gland to wake up and function again. He did say that it might be possible for the gland to start functioning sooner. This is because my body has had so much going on and had to fight so hard. There is a small chance that it could cause the gland to wake up a little sooner. But he said not to get my hopes up. The way I look at it the adrenal function is small potatoes compared to the tumor issues.
I think that is about all the news for now. I will let you all know as soon as I hear from the doctor about my cortisol level.
I would like to say thank you to all of my "Prayer Partners" and we are partners in this. Because of all of you I am still hanging in there with a smile. Please know that everyday because of your continued prayers, prayers are being answered. Thank you more than you can know.

This is my verse that I have claimed as mine for years.
Isaiah 26:4

Thursday, August 5, 2004 10:42 AM CDT

Good morning everyone! My mother thought I should make a journal entry telling you to make sure to look at the past entries. It tells about my appointment being set with MD Anderson. I think when I post this entry it will put yesterday's entry in the past entries also. As you can tell it's all still new for me.
I want to say thank you to everyone that has signed and left a note in my guest book. I check the guest book a couple of times a day. It's exciting to see the notes from everyone.
Tomorrow I will go to have my blood work done. Please say a prayer for my sleepy right adrenal gland. It's time for it to wake up!
I hope you all have a wonderful day.
Psalm 28:7

Wednesday, August 4, 2004 9:54 AM CDT

I was asked to give some history for those of you that are praying but might not know the whole story. Well, I won't go into the "whole" story because that could get lengthy. But I will try to give a summary.
This part of what I call "My Journey" also known as "My Life as a Science Project" began January 30, 2003. For about a year prior to this my doctors had been talking to me about the need to have the J pouch surgery. It took quite a bit of talking.
For those of you that may not know, I have a genetic disease, Familial Adenomatous Polyposis also known as Gardner's Syndrome. The easiest way for me to explain to people about this syndrome is to tell them that my APC gene (which is the tumor suppressing gene) is defective.
But back to the J pouch surgery. It was our hope that this surgery could be performed in one-step. But as some of you know, that did not work. Over the last year and a half I have had every complications that the surgeon talked to us about and some that were not. Some of these complications were: emergency surgery, abscesses, open wound, malnurished, fistulas, and the list goes on and on. During this time I have had numerous surgeries, out patient procedures, PICC lines for TPN, and so on. In the last eight weeks I have had three surgeries: desmoid removed from neck, adrenalectomy and exploratory. The last two are pretty major surgeries. I had to have the adrenalectomy because there was a tumor surrounding my left adrenal gland. This tumor caused my left adrenal gland to over produce cortisol. My cortisol level was through the roof. This also caused my right adrenal gland to go to sleep. So, now I am on hydrocortisone until my right gland wakes up and gets to work again. The doctor said that it could take up to 18 months for that to happen. When I asked him about the side effects of taking this medication, his answer to me was..."If you don't take it, you will die.The body cannot function without cortisol and right now you have none." Not the answer I was looking for. But he obviously knew that I don't like taking any medication. So, he just cut to the chase.
The exploratory surgery is another part. The surgeon went in to remove an abscess that had been causing a lot of pain. The abscess ended up having a desmoid inside it. He was only able to remove about 80% of the tumor. The rest of it was too close to organs to risk it. Then he found a surprise, on the left side in the mesentery (this is the blood supply to the small intestines)was a desmoid the size of a baseball to almost a softball. This tumor is inoperable because of where it is. I am taking Tamoxifen (chemo drug) in hopes that it will shrink all the tumors.

I will try to keep you up to date on what is going on now. This week is an easy one as far as doctors go. I saw my surgeon on Monday. On Friday I go for blood work to check my cortisol levels. Then I see my endocrinologists for follow up.

I would like to thank you all for your continued prayers and all the wonderful ways you have shown your love and support for me and my family.
Also, just to let you know, there is going to be a "Stephanie Crowe Benefit" concert on Saturday, August 21st at 7:00 pm at Charlotte Road Baptist Church. Thomas and Leah Payne will perform. You won't want to miss this. Their music will truly bless you. AmSouth bank has set up a Stephanie Crowe Benefit account.

Psalm 28:7

Wednesday, August 4, 2004 0:18 AM CDT

We have started this web page to let everyone know what is going on with Stephanie. This will be a good thing especially in the coming weeks when we travel to Texas.
We will try to keep you up to date about how God is answering prayers. If you ever doubt that just come to this web page for proof.
These are just a few of the ways prayers are being answered. AmSouth Bank opened the Stephanie Crowe Benefit account for donations/contributions to be made for medical expenses. On Saturday, August 21st at 7:00 pm at Charlotte Road Baptist Church there will be a Stephanie Crowe Benefit Concert featuring Thomas & Leah Payne. You won't want to miss this! You will get a blessing from hearing their music.
A big answer to prayer is that we got the appointment to go to MD Anderson in Houston, TX. Our appointment is Monday, August 23rd. They have told us to be prepared to be there for a week. Please pray for our safety of travel, our meetings with the doctors,the type of treatment they recommend, and Zach while we are in TX.
We are so very fortunate to have all of you praying for us. It is such a tremendous comfort and blessing. Thank you more than you can ever know.
Psalm 28:7

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