Journal History
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Wednesday, December 28, 2005 8:57 PM CST
Good evening everyone.
Merry Christmas and a happy new year to all of you. what a great season this is for us. It seems natural to compare the season from year to year. And for us it has been a very good one. A large part of that reason has been you wonderful people. You truly warm our hearts with your kindness. Thank you!
I remember last year and the emotional struggles of Christmas time. All of us were feeling a little unsteady and unsure. That was our first Christmas without Sarah. Some days I felt like I was caring an extra bag of weight (grief) on my back. The older girls had these odd but perfectly understandable fears. Theresa was afraid of the VCR sounds and the running washing machine, while Zoe was afraid of the house burning down. Each represented an uncontrollable situation for them. Little by little, (and with good counseling help) we made it through.
Now, there is much to celebrate. The girls are growing and so am I. Their appetite for knowledge is voracious and I am learning how best to feed it. As they continue down the road to maturity, my role is changing too. It has gone from their complete dependency on me (and Sarah) when they were very small, to about half dependency, half facilitator now. Of course Ingy still takes more direct care than the other two. But she is rapidly following in her older sisters foot steps. On the occasions when I can step back and observe their interactions among themselves and with others, I feel very blessed. They are developing into the kind of young women Sarah and I had worked so hard for. Each one has their own distinct personality and style, and they all have a lively, happy spirit.
Did I mention how blessed I felt? Yes, this Christmas season is a good one, a very good one! Thank you again everyone. I can always tell when people are praying for me an my family.
Peace, and have a safe new years celebration.
Chris
Thursday, December 22, 2005 3:33 PM CST
Good afternoon everyone.
I thought that I would give a quick update. Two birthday’s down, Christmas to go and then Zoebo! It has been a really nice week. We had a great time at the big house Christmas party. The girls had fun playing with the numerous cousins, and I had a good time talking with adults! For us, it is about the only time all year to get together with some other family members. It was nice to hear first hand the goings on in my brother’s and sister’s families.
Thank you for your generous gifts for the girls! I am going to update the pictures page with the latest photos of the birthday galas. The girls truly love what they have received. Well, I will update again after Christmas. Peace to all of you wonderful people. Have a great Christmas.
Chris
Wednesday, December 14, 2005 7:32 PM CST
Good evening everyone,
First thing right off the bat is a great big thank you to all of you wonderful people! Thank you so much for the cards and the gifts with which you are showering our family. I am truly humbled by your caring and generosity. I still have that streak in me that says I must do, make or buy something for each one of you. But when so many of you wonderful people pour out your love for us, that task becomes overwhelming, and I must just accept your gifts of the heart with great humility. God truly loves us, and you are the proof. Peace to all of you this blessed season.
Time is rapidly moving by. This weekend is the K. family Christmas gathering at the big house. I have been thinking of how long it has been happening. The early ones were in the mid 70’s, so that makes about 30 years! Each year the family gets a little bigger. By the way, I’m not talking of a 10 to 15 person gathering, try 40 to 50 people or more directly connected to the family! Sometimes old friends pop in for a while too. Now all we need is some good traveling weather.
Miss T’s birthday is tomorrow (Dec. 15). Oh how well I remember that birth. Sarah and I were so happy. She was named after my mother’s middle name. That was 9 years ago already! Wow. Tonight Theresa is busy deciphering Egyptian hieroglyphics. She and I watched a NOVA special on raising obelisks last night and that really grabbed her interest. So today it was the start of the Egypt investigation.
That girl is really something. She and her sisters wanted to do spelling a couple of days ago while I was working in my basement shop. I started out with age appropriate words and quickly escalated to COLLEGE level spelling words (for Theresa). She did very well spelling and using in sentences 4, 5 and 6 syllable words. I told her that probably within a year or two she will have all the skills in reading and spelling that adults posses. At that point, gathering knowledge about various subjects will become primary.
Yesterday all the girls wanted to play Marzipan's Pastry Place. For those of you who don’t know what that is, Marzipan's Pastry Place is the girls imaginary pastry shop set up just like a real bakery. A few years ago, it was a fun game of exchanging money. Slowly but surely I have been making it more realistic. Before long, they will know how to run a small business. It is really fun to watch them take on their roles as baker, accountant, clerk, customer, etc... Ingrid always wants to be a customer so that she can eat the imaginary bear claws.
What a wonderful season and what wonderful gifts I have been given. I thank God very often for the blessings he has poured into my life. The girls and all of you are living examples of that.
Peace to all of you this evening.
Chris
Friday, December 9, 2005 8:42 AM CST
Seasons Greetings everyone.
Are you getting in the spirit yet? It’s easier around here. Theresa and Ingy’s birthdays are in December and Zoe’s is in early February. so this whole season becomes one big party. When I tell people of the girls birthdays, they usually say oh what a shame. I tell them that each birthday is their special day and we celebrate it appropriately. Just like anyone else. I think it would become a “shame” if I considered their birth proximity to Christmas unimportant and then lumped them all together.
The girls will finish up the first half of the academic year this week. I will not be surprised at all if they are at the top of their respective classes when the grades arrive. This evening, while I was praying with Zoe, I prayed for her to always be curious, ask questions and seek the true answer. I do this as a part of the bedtime prayers with all the girls every night. But tonight, Zoe said, “dad, do you know why I don’t ask questions of Mrs. Ross?” I said no, why? “Because I already know the answers to the questions she asks.” That, in a nutshell seems to be the story for both of them. They are well beyond their peers in many areas. These facts as well as several other factors are causing me to reevaluate and reconsider home schooling for next fall.
Life is certainly a growing, changing thing. Ingrid is becoming more and more independent and,.....how shall I say.... forceful, in her dealings with her older siblings. It is quite a sight to see her walk over to Zoe or Theresa and push them out of a chair so she can us it. Of course these types of antics often cause much distress and gnashing of teeth among them. So ole dad steps in and helps them sorts things out. One afternoon Ingrid was busy drawing an elaborate picture in her room when I heard her yell to Zoe, “Leave me alone. I’m doing something that requires concentration!” What a hoot.
This evening the older girls had their Christmas Cantata (singing) program at the school. The weather was pretty dicy but we made it. It was a nice time. Zoe was ready to leave after 3 songs. But she decided to wait it out when I mentioned that there were treats in the cafeteria.
Oh, before I forget. Thank you Lutz’s and Franznick’s for helping out with the kids. They really had a great time at your homes. And I got a little daddy alone time:)
p.s. I am not ignoring anyone, sometimes Caringbridge has problems accepting updates. this is the 5th time I have tried to update this week. Perhaps tonight is the charm.
Peace everyone. You are in our prayers.
Chris
Wednesday, November 30, 2005 7:54 PM CST
Hello everyone.
We all had a very nice holiday and weekend. The food was excellent and the conversation was too. The girls stayed with Aunt Joanie from Thursday to late Sunday. That gave me some open time to work on my latest project and complete a few of the many chores around here. Only one thing slowed that down. I got the flu. My body just said stop and take it easy. I went to bed Friday evening with a shirt, sweatshirt, and jacket on. Then I buried myself under the covers! It was hard to get warm. I took a bath earlier in the evening with the hot water on full and it felt rather tepid.
I felt a little better on Saturday, and much better on Sunday. Just in time to go pick up the girls. A funny thing, even though I was sick, it felt good to just do nothing for a while.
Theresa and I got into a discussion about when she was born. We talked about the hospital and how mommy and I felt after she was born. The it dawned on me. We have been living in this house for almost exactly 10 years. Theresa was born just over a year after we moved in. Wow times flies! During our first year, Sarah and I often talked about what things would be like 5, 10, or 20 years down the road. We both wanted to have 2 or maybe 3 children. Moving to a bigger place in a more upscale part of town after a few years of being here did not appeal financially to us. Our goal and purpose for this place was to comfortably shelter us and our children and be easily affordable on one income.
Of course, not all our plans worked out.....
One plan that has not changed is raising our children in the best possible way. Sarah used to say that “babies don’t keep”. Translation, you will never regret the time spent enjoying your children. Do it now. That is pretty good advice. Thank you my dear.
Have a good evening everyone. Peace to you all.
Chris.
Wednesday, November 23, 2005 8:13 PM CST
Greetings all and happy Thanksgiving.
This is truly a special time of year for us. It has become our season of thankfulness. With 3 major holidays and 3 birthdays all in the span of about 2 months if feels like a continuous celebration. And that feels good.
Earlier I asked each girl what they were thankful for and this is what they said:
Miss T., My friends, family, and my class at school. Oh yes! and God!
Zoe, I am thankful for Daddy, Theresa, Ingrid, and God. Grandma and Grampa, bowling.
Ingrid, I am thankful for going to Keely’s house.
As for me, I am thankful for so very much! I really try to live my life in a grateful and thankful manner. A couple of weeks ago I mentioned that when everything is viewed as a gift, a transformation occurs inside. Even seemingly crappy situations or events have a beneficial purpose. They create a bottom or low point from which you can discover inner strength not found in any other way. Bottoms also strip away useless worries, cares or things that seemed important before. That’s because so much energy is used in adapting to and/or coping with the new situation at hand. One is forced to live in the present. That is a good thing.
I pray that all of you enjoy your holiday and the coming weekend.
Peace,
Chris
Friday, November 18, 2005 8:20 PM CST
Greetings all.
I hope this week has seen you in good stead.
We had a little scare early in the week with tornados popping up all around our area. All we got right here were strong thunderstorms and wind. Some parts just north of the Ohio river in Indiana got 5 to 8 inches of rain.
In case you haven't seen the photo album lately, I updated it with a few new pictures. Life continues to churn away around here. The holidays are coming up and that means 3 birthdays too. This afternoon, I took the girls bowling. What a hoot! Zoebo got a strike and the other girls began screaming and jumping up and down with delight. I, on the other hand, bowled like crap. It’s amazing how rusty one can get after 17 years! Overall it was a smashing success. And pretty affordable too. The girls want to go back often.
Lately I have been finding “manuscripts” scattered about the house. They belong to Theresa. She is in the process of writing a chapter book about a young girl and her adventures. At last check, she was on chapter 7. Perhaps when she is finished, I’ll have her update the web site and tell you about her book. It is complete with illustrations also.
Well, this one is a shorty tonight. I’m tired.
Peace everyone, we love you.
Chris
Friday, November 11, 2005 8:28 PM CST
Hello all. Thank you veterans. We all owe you our deepest gratitude today and always. It is no exaggeration to say that without you and your sacrifices, we would not be here today. Thank you!
Well, it has been a busy week as usual around here. On Monday, I took the girls and their bikes to a local park where they rode around the half mile track. They were ecstatic. Ingy got going a little too fast and crashed. Thing only thing hurt was her pride. So I consoled her and all was well. Zoebo is in need of a new(er) bike. The one she has was designed for smaller kids and she has simply outgrown it. I’ll surprise her one day.
Also on Monday afternoon, I had a parent teacher conference with Theresa’s teacher at the Latin School. No surprises, just conformation with what I already knew. “A” work across the board. The teacher is amazed and quite pleased with her intelligence and politeness. Zoe’s teacher has similar kudos for her. Occasionally, I will add a bonus, or even double bonus question to the girls home work to be turned in. The are typically given math work sheet assignments to completed by the next day. Zoe’s math work sheets have simple addition or subtraction of 1 or 2 digets. Zoebo told me she found it “sooooo boooooring!!” So to spice things up, I wrote on her sheet some equations with numbers in the millions to add and subtract. Her answers were correct, and she turned in the sheet. Her teacher was quite impressed that a 1st grader could do that. I truly am blessed to have girls that are so bright and loving. I thank God every day for them.
On Wednesday of the past week, I was taking a break from my latest project and I noticed Ingrid having a great time playing in the sandbox. So I went over and joined her. I guess it must just be a female thing, but she jabbered and jawed for 20 minutes straight! She was preparing an elaborate banquet for ‘her royal highness”. It consisted of pizza and chocolate milkshakes. My job was to be a porter and not say a word. Otherwise I would be interrupting the feast. Her creativity and imaginary friends have no bounds. What a great kid!
Thank you all for reading and praying for us.
Peace,
Chris
Friday, November 4, 2005 6:32 PM CST
Hello everyone.
An interesting thing happens when you have children. Time seems to compress and before you know it, a week has passed. I had been planning to update the site earlier in the week, but “life” kept on getting in the way!
The girls had a great time trick-or-treating on the 31st. They dressed up in the costumes I described in the earlier post. Our route this year was shortened so that we would not be overwhelmed with candy. And also so that the girls would not be totally wasted when they got home. As it ended up, the total take was still over 7 lbs! That will last the girls a long time. (I dole it out one piece per girl per day.) It works well with them. So I don’t push the sweets.
Speaking of sweets, that gives me a good segway into the next topic. The dentist. I took the girls to the U of L dental school this afternoon. Theresa got a cavity filled, while Zoe got her teeth polished. Both of them bounded out of there with big smiles on their faces and, of course, grumbling hungry stomachs! They seem to be always hungry.
Earlier in the week Theresa was feeling tired and sleepy. The next morning, she was covered from head to toe with hives. At first, I thought that it was chicken pox until Grandma Hughes reminded me that the girls got chicken pox vaccinations when Sarah was first diagnosed with cancer. So that meant that c p would be very unlikely. It was all kind of strange. that evening, I gave her an oatmeal bath and benedryl before bed. The next morning I was ready to contact the pediatrician if she did not improve. When that morning arrived, the hives were completely gone! And Miss T. was active as ever playing with her sisters.
Ole dad has been doing pretty well this week too. I do get tired by the end of the day, but it is a type of tiredness that induces sound sleep.
Thanks everyone for you prayers. The girls are growing so beautifully. It is an honor to me to be so richly entwined into their lives. Sarah is smiling!
Peace.
Chris
Thursday, October 27, 2005 8:02 PM CDT
Good evening all.
Autumn is finally here in Kentucky, and the leaves are starting to change. If you get a chance to visit a park, or take a drive through the country, do it. This year, the sugar maples, sweet gums, and ash trees seem to be most vibrant. The temperature has finally agreed with the calendar. (I know that many of you in other areas have felt the crispness in the air already.)
The girl are getting excited about halloween. I think that this year, Theresa has invited another friend to come along with us. It should be a good time. The long range forecast indicates a nice evening on the 31st. As of today, Theresa will go out dressed as a piece of candy corn; Zoe will go out as an owl (complete with feathered wings Grandma made); and Ingy is going as a black widow spider! I love creative kids.
Earlier in the week we stopped by Ralleys for a dinner bite to eat. Theresa and Zoe got their usual plain ralley burgers. Ingrid, on the other hand opted for a “Mushroom Swish Boyger.” When she told me that, I about died laughing. It was certainly one of those you-had-to-be-there moments. What a cutie.
Yesterday, while I was working on a project in my shop, Ingrid came over to me and said, “Hold me daddy”. I picked her up and sat her in my lap. Once there she curled up and hugged me for a good 3 minutes! No words at all. Just arms wrapped around my waist. It was an incredible moment! All my thoughts about getting back to work on the project just melted. In fact everything around us seemed to be utterly unimportant. Here, in my lap was this pure angel, showing pure love. It was really beyond words for me. I hug the girls and they hug me all the time, but this was something very special. It’s like I got a glimpse of heaven. Then, in a flash it was over. She jumped down and began playing her game again. The thought of Sarah was strongly in my mind for the rest of the day.
That event got me thinking about many other aspects of life. It reinforced the idea that everything we have is truly a gift. All possessions, aspirations and even our bodies are gifts. We really don’t own anything. We are just privileged enough to use the wonders of this world while we are here. In some ways that is very refreshing, and in others it is difficult to get the mind around. For instance, the death of Sarah is not something that I would have put at the top of the “gift” list. However, her death has opened the doors to a much better understanding of God’s desire for us. It has also enabled me to grow much more too. So what we choose to do with life’s gifts is the important thing.
Thanks everyone for your love and prayers. We are very blessed by all of you.
Peace.
Chris
Saturday, October 22, 2005 1:22 PM CDT
Hello everyone.
My how the time can zip along quickly. It seems like only yesterday when I put in the last update.
The girls are out with Joan Huber and the fabulous Cassandra enjoying the “worlds largest halloween party” at the Zoo. The are all very excited. Kathy Markham sent them really neat costumes as a gift earlier in the week, and Theresa, Zoe and Ingrid just loved them! on Friday, The girls watched a new Barbie DVD in 3-D that Kathy got for them. About once a month or so, we have a Friday movie night. It is always a good time. This time we had pizza instead of popcorn.
Thank you so much Kathy, Joan, and Cece for your support!
Last Monday, The Latin School had their annual fall hay ride at the founders’ home. They live on a 230 acre farm in Nelson county. There must have been close to 250 people there. We had a cookout, hay rides, square dancing and a very arduous hike. A great time was had by all. The hike was actually pretty hairy in some spots. I had to do a lot of coaching and handling of the girls to make sure they were safe. Ingrid stayed back at the base camp with Susan, a wonderful helper. The hike did accomplish it’s objectives. They were, to wear the kids out, and make them very hungry. Zoebo pooped out about 3/4 the way through so I got to carry her on my back up a very steep path. (Daddy was a little tired and hungry at the end of the hike too!)
Several of the parents were hoping that the skies were clear because they knew that I would bring a telescope or two to show them and any interested kid. But it was not to be.
On Thursday afternoon, I met a mom at the school pickup point who looked vaguely familiar. We talked for a moment and then she told me who she was. I immediately recognized her name and face from some pictures Sarah showed me a few years ago. She said that her youngest son (who was bouncing all over the place) was born through Sarah’s Doula aid. She was so grateful for Sarah’s calm, wise and reassuring gifts during the birth. She said that it would have been so much more difficult with out her. A moment later, she nearly burst into tears recalling the memory of Sarah’s death. It is quite a tribute to her deep love for and caring of mothers during the birth process.
Thank you everyone for your prayers and love. Thank you especially my dear for the wonderfully positive impression you left on so many people.
Peace.
Chris
I have been trying to post this update all week! Hopefully this time it will go through:)
Monday, October 10, 2005 7:42 PM CDT
Good evening all.
I hope that your work week has started off well. Today we cycled through the clothes. All three girls exchanged summer for fall and winter stuff. As they grow, various things don’t fit them anymore. So we take them to the Salvation Army for use with the Hurricanes victims. It always amazes me to see how much stuff we donate! I took an additional 12 bags filled with clothes there today. They are always very gracious and appreciative.
We took a trip to the library today too. It is always a big hit with the girls. The librarians and the rest of the staff know them by name. Theresa devours books. She will check out 5 or 6 at a time and then read them all within a few days. Last week she checked out On the Banks of Plum Creek, A Laura Ingalls book and read the whole 329 pages in 2 days. Zoe has become fascinated with a horse book that has detailed information, drawings and photographs. It appears to be a rather sophisticated encyclopedia of the horse. She studies the pictures intently and then works her way through the description. It is really neat to watch. It fascinates me because that is the way I learned to read well. Nothing like a good old encyclopedia of an interesting topic. Ingrid has started drawing letters and pictures much better now. I will often trace an outline of letters and ask her to “connect the dots”. She really enjoys it. And is becoming proficient at it too.
Shifting gears now.
Over the weekend, I was perusing Sarah’s files on the computer and ran across a written speech she gave to an adult Catholic group at the Cathedral. The title of the speech was, “For Better or for Worse”. It was written shortly before she started the experimental chemo at the Sarah Cannon Cancer Center in Nashville. This was a particularly hairy time for her and us because she had just finished up a heavy radiation regimen to stop the ferocious back pain, and new cancer was found in her liver. All conventional treatment options had been used up. So she wrote this speech with a very clear understanding that her own mortality was staring her in the face.
So, I decided to select a few excerpts from this speech for you to read. It will take some time to read but I think that you will like it... Here it goes:
.....”Chris said “Good morning” and asked how I felt, etc. Then I asked what happened because I still did not know other than I obviously did not have the planned laparoscopic surgery. He cut right to the chase. “Dr Chipman removed half your colon, you have colon cancer” It took about a second for that to register, even through all the pain medication I was on. I said, “I kind of thought that is what it was.” Then I drifted for a few minutes. My immediate thought was that I was not dying. Then I said, “Well, I will be here a few days won’t I?” with that I began to give him a list of what groceries that we needed and how to use the WIC certificates and where I kept them. I even had the presence of mind to tell him to call Philip and tell him I would not be at the concert that night. It is still surreal just how calmly and matter of factly I took the information. It was true, though, I felt relieved to FINALLY know what had been giving me all this pain and anemia and worry ever since our third child, Ingrid, was born.
Sarah talks a little about her previous relationship with God, and how it was one of fear and conditional (in her mind) love.... Then she throws in some humor...
It was not until my divorce and subsequent remarriage that I was to learn about true love, trust and a loving God.
My current husband, Chris, and I met when we were in the 6th grade. Our families knew of each other for years because of mutual school attendance and because our mothers worked in the same doctor’s office. Chris says he always had a crush on me. Of course he never enlightened me on this fact and even if he had, I would never have taken him up on it because I was a smart nerd and he was also. In the toxic breeding ground of high school a “two nerd” mix is the kiss of social death. So we never dated. I married two weeks after my 19th birthday. Chris did not marry for the first time for many more years. Over the years of my miserable marriage, I would hear of Chris through my mom or his mom and think of what a nice guy he was but alas, I was married and happily so, so I thought. Anyway it was impossible.
Sarah continues....
To shorten the story, Chris and I finally did re-meet and hit it off and we married a couple of years later. We are happily married with 3 children.
When I say happily married, I do not mean what most of my friends or acquaintances mean. No, I don’t run gleefully into his arms whenever he arrives on the scene, nor do I dread his presence when not planned. I deeply, truly and honestly know the presence of God in our marriage and have a deep abiding love and respect for him and he for me. We work together to make our marriage fulfilling and our parenting rewarding. We both weathered some very miserable first marriages and both had agreed to ourselves to never be untrue to our natures or selves in a relationship again. As a result we have formed a much better relationship that we ever had before.
Now comes a whole bunch of stuff I will skip over, to perhaps put in in another update....
The next section is about another “curve ball” in life just after Theresa was born.
Chris went back to work and mom and I began my new life as a mother. About 4 days later I received a call from Chris who was at work. “I have some incredible news.” All giddy I happily asked what it was and he told me he was laid off effective immediately. I could literally feel the floor drop from underneath me. I gasped and my mother came running. It was one of my biggest fears--an unemployed husband.
I think God was tempering our faith by fire....
Fears of money needs, work needs, etc raced. Over the next few weeks I learned to know and respect my husband in a profoundly deeper level. God not only helped us, he provided Chris with a “Lay off proof” job. He is self employed and has been ever since that fateful day......All needs were met, often before asking God. I gradually came to get an inkling of a loving, forgiving God rather than a judgmental one.
...Over time our other 2 daughters were born and with each birth and my growing motherhood, I got more and more peaceful about God, love and forgiveness. I also began to worry a bit less.
Here is a profound and wonderful discovery of truth Sarah came to realize. Here’s her words:
Since last year I have learned so very very much about life but most of all about love and trust. There is nothing that is bettered by worry. I have learned that
Worry and fear are the opposite of love. You need to
Love yourself more than you ever have.
Love yourself enough to stop worrying.
Love yourself enough
to give yourself the gift of peace. Also I learned that
Worrying does not empty tomorrow of its troubles....
It empties today of its strength.
So true my dear, so true.
I cling to my very comforting knowledge that none of us.....>NONE of us knows how long we have. We truly don’t. To squander our time with the luxury of worry is so very disrespectful. It denies the gift of today. It denies us joy and pleasure and love. It empties today of its strength.
Sarah finishes up with these words:
As a result of all that has happened thus far, I don’t claim to be totally free of fear and worry. However, I do claim a much more intimate love of God. I know now of God’s love for me and his forgiveness--not a desperate love but a deep and lasting one. He gives me all sorts of gifts each day and each moment. The musical laughter of our girls, the beauty of the sun and moon, the blessing of air conditioning and a mini van. I know it sounds sappy or trite but I have finally learned to live in the moment all of the time rather than just when it is convenient.
My hope and prayer for all of you is that it does not take the experience of cancer or severe loss to cause you to learn and accept the love of God. I pray you can look to those of us who had to be hit over the head with it to learn it. It is true. Each moment counts
Each moment is worth it.
Peace to all of you tonight.
Chris
Tuesday, October 4, 2005 7:22 PM CDT
Hello everyone,
Happy birthday to me. Happy birthday to me. Happy birthday to daddy,.... Happy birthday I’m 43!
I had my birthday on October 1st. My sister took the girls for the weekend, and I had an opportunity to relax and enjoy a quiet couple of days. Quiet, alone time is so valuable to me. Of course, all I have to do is look around this place and see the many chores that need to be done, and my quiet time vanishes. But this weekend, I went to our astronomy club’s dark sky observatory site in Indiana and spent most of Friday night quietly watching and photographing the heavens. The heavens is more grand than we can even imagine. Then on Saturday afternoon, I came home watched a football game and then did a bunch of chores. For me, it is easier to relax after chores are done.
Thank you mom for the new wallet and gift. And thank you Grandma and Grampa Hughes for the dinner tonight and the gift. I am surrounded by wonderful people! God has surely blessed me tremendously over the years. The girls continue to be an outpouring of that blessing. After such an enjoyable weekend, I am kind of pooped tonight. So I will sign off.
Thank you everyone. I mean this with all my heart, your prayers and help are a tremendous gift to my family. Each night we pray for you too!
Peace
Chris
Tuesday, September 27, 2005 7:13 PM CDT
Good evening everyone.
Well, the days keep marching on. And the girls keep growing right along with them. Theresa and Latin go together really well. She enjoys memorizing all kinds of words and sayings. I let her know that Latin is the basis for 5 other languages, and if she wants to, she could become quite the linguist. That would be really interesting to have a daughter who is fluent in 5 languages. Time will tell. I’m glad she enjoys it.
I had 4 years of Latin in high school and won 2 first place awards for outstanding performance at a state wide competition. So perhaps it is genetic.
This may seem a little corny, but I have been feeling Sarah’s presence a lot lately. The other day, a book on the crowded book case in the bedroom caught my eye. The title was “daddy”. The interesting thing is that when I pulled the book out, it automatically opened to a page in which Sarah wrote to me the following: “You’re going to make a great daddy! I love you, I love you, I love you.” I had not even opened that book or paid any attention to it since 1996. But for some reason, I pulled it off the shelf. I did not even remember Sarah’s note to me.
Another incident happened a couple of days back when Ingrid was playing in the van. When it was time to pick up the girls, Ingrid handed me this tape that had “es” written on it. I had no idea where from where it came. So I put it in the tape player and bigger than life, there was Sarah singing beautifully! Ingrid said, “daddy, that’s mommy!” Tears choked up inside me.
Then, a few hours later, I was thinking about her and told the girls that I missed mommy. Not more than a couple of seconds later, I read some graffiti on a bridge overpass that said, “Chris, I love you”. Call me weird, but these things are happening. And I often think of what a dear friend told me once. The veil between here and heaven is sometimes very thin.
Changing the subject. I had my 3 month appointment with the Endocrinologist the other day. We discussed my diabetes lab results . She started off with this statement: “you’re about the healthiest diabetic patient I have.” I like positive feedback! My A1c was 6.1, cholesterol was good, as was blood pressure and weight. My resting heart rate is still hovering around 50 bpm. So we had a little conversation about what diabetes means in my case. The bottom line, it seems, is that my body is still producing about the “average” amount of insulin. But, when a slug of carbohydrate enters my system, my pancreas does not have much of a capacity to “squirt” additional insulin into the blood stream to quickly lower the blood sugar level. My own testing has indicated as much. So I am an unusual case. Gee.... Imagine that!
Oh well, I am determined to keep this thing under good control from here on out. As I mentioned to the Dr., I have all the incentive in the world to remain healthy. She agreed.
Take care everyone. Peace to you and yours this evening.
Chris
Monday, September 19, 2005 7:02 PM CDT
Hello everyone.
Tonight I will take dictation from Theresa. Here it goes.
Hello! Lately we have been turning toys into different things. Zoe has a chameleon toy and I have a dark magician toy. We turned Zoe’s chameleon into a fire breathing dragon, and my dark magician toy into a wizard with a glittery sword, moon reflector on her hat, and a belt to hold her sword.
Today, I made a newspaper called the Scribbler Gazette. The headline read; Sunny Found! (Sunny is Zoe’s Polly Pocket) I have been playing with my yellow canary doll. And I turned her into a princess by slipping her legs into a crochet hat for use as a petticoat. And using an old porcelain doll dress for her princess dress.
And Friday, Zoe found a dollar on the sidewalk by the library! She is going to us it tomorrow to by a drink at the school cafeteria. In school we are reading Farmer Boy, the third book in the Laura Ingalls little house series. The other day at school while I was walking with my lunch box to the trash can to throw away my trash, when the girls at the third grade table cried, “your lunch box!” My lunch box was not zipped, and everything fell out onto the floor. Everyone even me started laughing. So I picked the stuff up, zipped up my lunch box, and threw my trash away.
That is all I have to say. And thanks to dad for taking dictation for me.
There you have it. The active mind of an eight year old. Perhaps at a later date, I’ll include Zoe into the mix.
Peace everyone, have a great week.
Tuesday, September 13, 2005 12:01 AM CDT
Good afternoon everyone,
Time continues to march by and the girls continue to grow. Zoe, Ingrid, Grandpa Pal and I went swimming Sunday afternoon, while Theresa and Grandma went to see a concert put on by Miss T’s piano teacher. Theresa really enjoyed the concert. And we had a great time at the pool. Sarah would be (is) so proud of them.
Zoe and Ingy are like fearless fish in the pool. Zoe actually likes playing in the deep end (7 to 9 feet) more than the shallow side. Ingrid wears a floaty suit that keeps he upright while she happily wanders around. I just got this strong feeling that Sarah was smiling and laughing. I also got the feeling that she was very pleased with me.
Last Thursday, Theresa and Zoe came home with homework to do. To start with, it was pretty simple. Zoe said that it was “booooooreing!”. Theresa didn’t complain. What Theresa got excited about was her Latin class assignment. Part of her homework included a fairly lengthy mealtime prayer in Latin. The students were supposed to study it over the weekend and try to memorize it during the week at school. Theresa memorized it by Thursday night, and said it at most meals throughout the weekend.
Well, it’s back to work. Ingrid is with Cece and her daughter Keely today, so that gives me some uninterrupted cabinet making time. I have put up a couple of new photos of the girls. Check them out if you have time.
Peace and thank you everyone.
Chris
Wednesday, September 7, 2005 7:35 PM CDT
Good evening all.
It has been pretty busy around here. The girls have started the Latin School and they enjoy it. The teachers are quite impressed with them too. (That doesn’t surprise me). Ingrid has been happy with this new situation. That’s because she gets me or sometimes Grandma all to herself for 3 days a week. And, as I had planned, I get the time necessary to work pretty uninterrupted on client’s projects.
There are a lot of us homeschooler parents sending our children to this school, and we have very high expectations of their performance and that of the staff. The combination of high expectations, rigorous classical education, and a loving christian environment appears to be coming together quite well. There is ample opportunity for parents to contribute in various ways throughout the day if they so choose. And the majority of us are Catholic.
Throughout this whole process I have felt Sarah’s presence. I remember months ago I used to write about past, present and future things coming together at the right time. Well that has happened again. Yesterday was Sarah and my 10th anniversary. Well, would have been. It also was the girls first day of school. Two seemingly unrelated events happening on exactly the same day. But wait, there’s more. Two days ago, I finally had the time to meet my new neighbors from across the street. They moved in a couple of months ago. The wife helped set up the Latin School! Hummmmm interesting coincidences? I think not! There is still more.
A client I met early last week (through an associate) has a wife that was one of Sarah’s doula clients a few years ago. They are really nice people and had great things to say about Sarah. I found out that they are sending their children to the Latin School too! The oldest child’s name is........ ZOE! She is in Theresa’s grade. They also have a son, he is in Zoebo’s grade! Still think things are just coincidence? Not me! I have also met members of the Cathedral choir (they sang with Sarah for years) who have their children at the Latin School. The last thing, so far, I view as a gift to me. Last Labor Day weekend, my sister Joanie took the girls to her place. That left me free to join my astronomy club members at our observing site for a couple of nights. We had a great time. It was a moonless night, perfect temperature, no wind, the darkest, clearest skies in memory, and a holiday weekend to boot! Those kind of things happen only very rarely.
Thank you my dear, my wonderful bride.
Well, I hope all of you are enjoying your week. Thank you very much. In a few days, I will try to get some new photos uploaded to the site.
Peace,
Chris
Saturday, September 3, 2005 12:04 AM CDT
Hello everyone.
Just a shorty today.
I hope that you all are finding this Holiday weekend to your liking. With the recent hurricane events, there is no doubt that we need it.
It does my heart good to see so much help traveling down I-65 through Louisville. I have seen many convoys of electric company trucks, army trucks and contractors galore loaded up with supplies. The air national guard is in on it too. We have around 10, C-130 Hercules aircraft stationed at the airport. And at least 3 have been stuffed full of medical supplies, an elite Para-rescue team and 10’s of thousands of sandbags. On their return trips, they have been bringing back wounded and sick for care at our hospitals. Despite what you see on the sensational images driven media, America is fully mobilized and helping!
The girls, Grandma Hughes and I went to The Latin School for an open house yesterday. It gave us a chance to meet the teachers and some other classmates. The girls liked it and I think that they will do well. The first day of class is Sept. 6th. I will fill you in on how things went for them a little later.
Peace everyone, help out if you can.
And last but not by any means least..... Happy birthday MOM!!:)
Chris
Sunday, August 28, 2005 10:31 AM CDT
Good morning everyone.
I trust you are having a restful weekend. Ever since I have been self employed, it has been a temptation to work on clients projects Saturday and Sunday. However, I have been really good at avoiding it. It’s interesting what happens. My productivity actually is considerably improved when I take time to rest and go to Mass over the weekend. Saturday is our clean basement and clothes day. Gradually, it is becoming easier and easier for us. (The girls are getting the message!)
Earlier in the week, Grandma took the girls to the library while I did some errands. When they arrived home. Zoebo was extremely excited to show me her new library card! Her face was all aglow and beaming. She is gaining in her book reading confidence. Friday afternoon, we went back and she wanted to check out 6 books and 3 audio tapes! (A little too much of a good thing?) It will be interesting to see where she will be with her class at the Latin School.
Last week, I started reading bible parables to the girls during breakfast. After the parable, I ask them to explain to me what they think it meant. We usually had a lively discussion filled with all kinds of funny kid thinking. They seem to enjoy it and it helps give them a good scripturally based foundation. It helps me too.
At about 6:30 am the other morning, I heard this beautiful, angelic voice singing in the basement below my bedroom. It was Theresa singing a pretty little song that Aunt Joanie taught her. I just thought to myself, how wonderful a way to wake up. Blessings seem to come at all times and in many different ways with these girls. Last Sunday, one of the nuns who usually sits behind us at Mass talked to me in the hall later about the girls and me. She said that she was impressed with the joy I seem to show with them and the role I have been dealt. I told her that this is where God wants me to be right now, and I have chosen to take the task with a joyous heart. She said it shows.
Well everyone, I hope the rest of your weekend will be a restful one. It’s important. Thank you for all your prayers and help.
Peace,
Chris
Thursday, August 18, 2005 8:50 PM CDT
Good evening all.
It has certainly been a busy week this week. Come to think of it, when has it NOT been a busy week around here?!
Early in the week, Ingrid started responding to my commands very slowly. I would ask her to wash up for dinner, and she would mumble quietly and move slowly. It frustrated me so I asked her what was going on. She told me that she moving like a “girlequin”. A girlequin?, what the heck is that! She then explained very calmly to me that a girlequin is a girl mannequin. And that mannequins don’t move very fast. I about died. It was hilarious! So now I have her turn off the girlequin button before asking her to do something for me.
Tuesday afternoon, I took the girls to the pediatricians office for physicals. Dr. P. is very good and he and his nurses spent considerable time with the girls, asking them questions and checking them out. As usual the girls were not shy about answering questions. Everything checked out well. Dr. P. says they seem to be in excellent health physically and emotionally. He then said to me not to be too concerned about them entering school. He believes that they are “easily 1 1/2, 2 or maybe even 3 grades higher than their age.” He said, “what ever you are doing, keep it up.” And, “You can trust me on this, I see a lot of kids.” He then asked if I could teach his son. We both laughed.
I felt good hearing his opinion of the girls. So often the home schooling I have done with the girls has been misunderstood by folks. There is often an unfounded fear or concern of the children being “unsocialized” and “isolated” from the community and friends. The facts are completely opposite. (Just spend 5 minutes with the girls and you tell me.) The bottom line is that they are very bright, well adjusted, confident, highly creative and happy children. They really are a tremendous blessing.
Yesterday, Grandma Hughes took all three girls to the Zoo to see the lorakeets. (sp). For those of you who do not know, the lorakeets are exotic and very friendly birds on exhibit. You can go into the cage and feed them. The big girls loved it, but Ingy became a little frightened when one decided to land on her head. Overall, the girls said it was a great time.
Thanks everyone for reading and offering your prayers and support. Some days it is a little hard to write, but I feel better later on. After all, I don’t have a spouse to bounce things off of anymore. So, you who are married, don’t ever take your spouse for granted!
Peace everyone.
Chris
Saturday, August 13, 2005 6:43 PM CDT
Good evening all.
Today we celebrated Sarah’s 42nd birthday. We had Grampa and Grama over for a cookout. We ate inside because it was so hot. Theresa became really interested in making a birthday cake. At first she wanted to make a German chocolate cake from scratch. (German chocolate was Sarah’s favorite). But we were a little short on ingredients, so she settled on a chocolate cake. With just a little help from me, it turned out very well.
So we celebrated Sarah’s birthday with good food, good family, good cake and good stories. I know Sarah was smiling. And yes, I still miss her.
Not much else to say tonight, other than keep cool and thank you all for your support and prayers.
Peace,
Chris
Sunday, August 7, 2005 7:57 PM CDT
Good evening everyone.
The weekend is drawing to a close. The girls are in bed and I have my precious private time to relax, think and pray. As usual around here it has been busy. Not frenetic, but busy nonetheless.
The girls had a special treat a couple of days ago. Grandma K. came down to buy the new school uniforms for the girls. Grandma Hughes helped out a lot too. School starts for Miss T. and Zoe on the Tuesday after labor day. That’s a full 2 or 3 weeks later than the other schools around here. Classical education is considerable different than the standard fare.
All the girls have had an abundance of pool time this week too. Thank You Joan H. for taking the kids to the pool! It was a great time for them, and a nice free day for me! The girls and I also swam this afternoon at Grandma and Grampa pal’s pool. Sarah would be so proud of how comfortable and confident they are in the water. Ingrid has a great time just paddling around in her “floatie suit”. While the other two girls do cannon balls from the pool side. It is great to sit back and enjoy them. Speaking of water, I have added some new photos, be sure to check them out.
Life certainly keeps rolling along. I have felt a little sad during the past few weeks and just this evening I realized why. Sarah’s birthday is next weekend. She would have been 42 years young. Also the whole cancer ordeal started in August of 02. Each time I feel that I am really over this grief thing, it hits me in one way or another. Each episode seems to be a little less painful than the last, but they are still certainly there. I don’t recommend losing your spouse to cancer, it is a real bummer.
But if you have to lose your spouse to cancer (or any other way for that matter), be prepared to grieve and grow in a very intense manner. While it has been hard, sometimes very hard, the growth from grief has been a tremendous asset to me. But like anything in life, we have choices. I remember seeing very clearly two options in front of me. One; blame God for Sarah’s death, be angry at him or myself and slam the door on the hurting feelings. Or two; trust God in than he knows best, and let those feelings of pain, loss and hurt come pouring out. I chose two and have grown a lot because of it.
All of you have been a tremendous part of my growth and that of my family. I am certain that without your prayers and support, this journey would have been much rockier. Thank you so very much.
Peace and have a great week.
Chris
Sunday, July 31, 2005 7:58 PM CDT
Good evening all.
I just got the girls to bed after a very long and enjoyable day. We started out as usual for Sunday morning and went to 9:30 Mass. Afterwards, the two older girls spent the rest of the day with the hallowed Cassandra. Joan, Cassandra’s mom took the girls to see the play, The Wizard of Oz. According to my girls it was wonderful! They even got to meet the actors afterwards. Thank you Joan so much for the day!
Ingy and I had the day together for a change. As we were driving back from church, I told her that we would be spending more time together when the girls go to The Latin School a few days a week in September. She seemed very happy with that. When we got home, I looked around and saw many things to do. Then I happily sat down and did none of them. It was wonderful to just do nothing and relax (I put in a movie for Ingy) for almost 5 hours! Did I mention that I was thankful to Joan?!
Friday night and into Saturday was fun too. The girls (all 3 this time) and I went astrocamping at my astronomy club’s dark sky site near Marengo cave. Zoe and Theresa brought their little tent from grandma K. and slept in that. Ingrid and I slept in my old 2 person bicycling tent. Last time we brought the big kahuna tent and inflatable mattress. They were entirely too much work to set up and take down for just one night. This time we traveled light. And it was much more enjoyable. The girls were so excited. I had a great time using my scope and checking out the views my friends had in theirs. At one time in the wee hours of the morning, I saw somethings hanging out of the girls tent. As I came closer to investigate, I noticed that the things were their heads. They were watching for shooting stars. Needless to say, we were all pretty tired Saturday morning.
Well, thank you all for your wonderful support and prayers for us. Life keeps rolling along. Be sure to check out the photos page. After much thought, I decided to include the last picture taken of Sarah.
Peace everyone.
Chris
Monday, July 25, 2005 7:26 PM CDT
We’re havin a heat wave!!... a tropical heat wave!!
Actually, I think FURNACE is more appropriate. We hit 101 late this afternoon. Tomorrow is more of the same. Bombay anyone?
Well, it has been an eventful time this past week. Theresa and Zoe taught Ingrid how to float / dog paddle on her own. Sarah is smiling in heaven for sure! I was going to a client’s house to do some work, so I dropped the girls off at Grampa and Grandma’s house. A couple of hours later when I returned, I was flooded with the good news. My oh my she is growing! More and more Ingy is becoming a very determined part of our family. It is great to watch. She is also learning how to push buttons and get her own way.
On Friday afternoon I took the girls to a drop off point for a weekend at Aunt Joanies house. She is such a big hit for them (me too!) They really have a great time. Theresa wants to tell everyone that they loved watching “Charlie and the Chocolate Factory”. It is always cute when I pick them up at the end of the weekend. They regale me with their adventures for most of the trip home.
A weekend at Aunt Joanies also means a weekend of peace and quiet for me! However, while I really greatly enjoy the solitude, I look around me and realize that there are lots and lots of things to be done. Consequently, I usually work my butt off around the house during these weekends. There are no bones about it, raising 3 kids is a tremendous joy a great deal of work!
Speaking of work, today we had our clean house day. Usually every other Monday or so we deep clean the homestead. Theresa and Zoe are really starting to come along with help. The love to clean the bathrooms. So I turn them loose. Little by little, they seem to get better at it.
On a final note, Theresa earned her “Math Multiplication / Division Mastery Certificate” on Thursday. What this is is an award I created for a student who is very competent with times tables and division tables 1 through 12. It is approximately 80 rigorous and comprehensive questions both oral and written that the student must answer better than 90% correct to get the certificate. I purposely did my best to trip her up. And she got 94%. So I printed up a really nice, suitable-for-framing “diploma” commemorating her achievement. Theresa is so proud of herself. It is wonderful to see. I have always believed high standards = high achievement.
Thank you everyone for your love, support and prayers. Keep cool.
Peace
Chris
Monday, July 18, 2005 7:02 PM CDT
Good evening all.
We had quite a busy weekend around here. I took the girls up to northeast Indiana for a Krauskopf family reunion. I checked to old log book and this has been happening about every year since at least 1953. The generations just keep on coming. It was good to see cousins, aunts and uncles I had not seen for a long while. Everyone chipped in with the food and stuff. Sister Joanie was the consummate game master too. (I think that I will pass the next time we play; spin-around-10-times-really-fast-and-then-run-in-a-straight-line-game!!) The girls, as usual, had a ball. They also were really dirty from playing with all the cousins when it was time to leave for Thom and Pat’s house.
Thanks too Thom, Pat, Alex and Amy for your hospitality. It is always a big hit with the girls and refreshing for me to stop in for a visit. Bubble baths rate quite high on the girls list of most wonderful things!
This afternoon I let the girls watch a movie/ musical while I did some work on cabinets. About 3:30, Ingy came down and asked what scene I liked most in “The Music of Sound”. It was one of those little innocent statements that hit me just at the right time. I started to laugh and chuckle. A moment later she said, “Dad!, what’s so funny!?” to which I responded, “Do you mean, The Sound of Music?” She said, “Oh yes!” and started to laugh in a little embarrassed way.
You can just never tell when these little things will pop out. I am just so happy to be here to see them.
Good night all.
And may God bring peace into your lives this day.
Chris
Tuesday, July 12, 2005 8:18 PM CDT
Good evening everyone
We had a successful camping trip last weekend. There was a lot of work to do for only one night, but the night sky was very clear for several hours and that was great. We camped at my astronomy club’s dark sky observatory site (along with many others). Theresa and Zoe came with me while Ingy stayed at grandma and grampa pal’s house.
The older girls were like the proverbial kids in a candy store. They were constantly wandering around the 32 acre site, checking out the observatory, other people’s telescopes and the scenery in general. When it finally became dark enough, They both checked out the moon and jupiter through their little telescopes. Theresa was jumping up and down with excitement while Zoe was whining about being soooo tired! They bedded down about 10:30 and that allowed me to observe and draw the heavens in relative peace. I also got to talk with my friends from the club and check out the views through their equipment.
By 2:30 am I was sinking fast. The sky was starting to get cloudy too so I didn’t feel like I missed anything. All of us slept like logs and in the morning, we had a nice breakfast, packed up and came home. On the way home I asked Miss T. what she thought of the trip. She was very excited about it and wondered when we could do it again! Soon my dear, soon.
I took Ingrid to get her health checkup the other day. She is still at about 110 % for height and 97% for weight. 43 lbs and 43 inches. After several back and forth questions with the practitioner about Ingy and the other girls, I realized that they are not just growing they are thriving. Despite the tremendous challenges we have had to face as a family over the past few years, the girls are really blossoming. I too am growing and learning.
This parenting thing is not only incredibly important, it is incredibly rewarding. It seems like you get what you model. What I expect out of the girls must be modeled in my own life. Otherwise, my words ring hollow. They are gradually maturing into beautiful, loving, confident, spiritual and intelligent young women right before my eyes. I really think that Sarah would be quite proud of them.
Thank you everyone too for your precious prayers and notes. There is no doubt in my mind that we are where we are because of your support.
peace
Chris
ps I have put in some new photos.
Sunday, July 10, 2005 5:02 PM CDT
YAAAA HOO!
If you check the photo album you will notice that I have been successful at loading new photos!! Perseverance pays off. Thanks for the encouragement Moms 99 group! I will upload new photos frequently because I have quite a backlog.
The girls are watching the Dreamworks animated show “Sinbad” tonight. The plan was for them to go to my sister’s house for the weekend, however she has a very sore back. So they will get to take a 1 day trial camping trip with me Saturday evening. Hopefully the weather will be nice. Stay tuned folks, I will let you know how it went.
Peace tonight everyone
Chris
Monday, July 4, 2005 8:49 PM CDT
Happy 4th everyone!
...And the rockets red glare!, the bombs bursting in air!...
This is a great holiday, and we have had a great weekend. As I am typing this, I can hear the report and whistling of fireworks echoing around the neighborhood. Occasionally, there is a mighty hefty boom that rattles the windows. People are having a great time. Too bad that the girls are all asleep.
We went up to Muncie yesterday to celebrate my niece’s HS graduation. Many members and classmates joined in and as the old saying goes, a good time was had by all. I really enjoyed talking with my sister and sharing recent life experiences into the wee hours of the morning. The girls made themselves at home and of course chowed down on the food. Zoebo came up to me proudly and said, “Daddy, I‘ve had 3 pieces of cake!” I had to cut her off at that point. On the trip back this afternoon, we stopped at Hope, In. at the local park for lunch and playground. The girls great grandmother and other family members from even farther back are buried there.
This evening, we watched “The Empire Strikes Back” as the second movie of the Star Wars series. The two older girls really enjoy the action and have a great time with it. Ingy says that she thinks Darth Vader is cute. Theresa and Zoe run around the house singing the theme songs.
I think that I will sign off for now. My thought are becoming incoherent due to a lack of sleep. One final thing. Thank you brother Thom and nephew Alex for helping me put up the new shed. It looks great and will work much better than the old one.
Peace everyone, be safe
Chris
Sunday, June 26, 2005 8:24 PM CDT
Hello everyone.
I hope you are staying cool. This past week has been a scorcher here in the Ohio Valley. Summer has certainly arrived with a vengeance! It isn’t all bad, we get more opportunity to use Grampa and Grandma’s pool.
The girls are really comfortable in the pool. The two older ones now jump in doing cannon balls and belly flops. Theresa is gradually gaining the coordination for the crawl stroke. Zoebo, on the other hand, still swims like a bobber: straight up and down! I’ll have them swimming well before the year is out. (maybe!) Ingy just likes to float around and hang on. She is pretty comfortable too. What a blessing it is to now go to the pool and actually relax! I knew that this day would come eventually. Now the only difficulty is getting them out when it is time to go! HA!
All three of the girls continue to devour information. Our home schooling continues year round. We hit the library once or twice a week so that they can get more books and things. Ingrid loves to play “word munchers” and “blues clues” on the computer. Theresa and Zoe are encouraged by me to seek out and find information about the “topic of the day” that interests them. Theresa’s topic has been snakes. Especially huge ones! She now tells me everything I ever wanted to know about large snakes.
Zoebo continues to make progress on her reading. The subject she has shown fascination with lately is...... elevators. They are kind of magical if you think about it in a 6 year old kind of way. You step into a box at one place, press a button, and then get off in an entirely different place. She is very interested in how the whole thing works. Yesterday morning we talked about Mr. Otis and his invention. Tonight I am finding some ”kid sized” web sites about elevators that should help satiate her imagination.... for the moment.
On Friday we all went to the Science Center and an art museum in downtown Louisville. The museum had already taken down it’s display of Kentucky fine furniture and that bummed me out. The Science Center however, was a smash hit. It always is. Every couple of months or so, many of the interactive displays are changed and a new topic is presented. This month the topic is economics. Banking, money, the stock market etc. All three of the girls picked up right away how to do the bank teller and store kiosks. They said it was just like “George’s Store”. (George’s store is a game I created that we play frequently at home. It’s basically a general store where goods are bought and sold using coins. Someone has to be the customer, sales clerk, store manager and, Zoe’s favorite, accountant. It’s a microcosm of how to run a real business.)
After about an hour and a half of running around, they were pooped. So we came home and had lunch.
I love these girls so very much. It is a wonderful experience to watch, participate and guide them along this path of life. Each one approaches the same thing in a different way. My goal is and always has been to give them the tools to be exceptional young women, rich in faith, virtue, wisdom, compassion and confidence with the gifts they possess. This puts a burden on me that I gladly accept. Indeed enjoy!
Peace everyone, keep cool.
Chris
ps. CONGRATULATIONS CATHY ON YOU NEW BABY BOY!!
Tuesday, June 21, 2005 4:42 PM CDT
Hello all, happy summer solstice.
Tonight a special update from Miss T. I will take dictation from her. Here goes:
Lately I have been wanting to learn about anacondas (big snakes). I found some great books at the library. One on anacondas, one on how to own a python, and one called mythology and the universe. I also found a web site about Indian Pythons. They are very similar to the anaconda. But they have a different pattern on their skin.
Also, grampa pal’s ankle has swollen up and the doctors have finally found a way to make it stop.
We recently watched “Monsters Inc.” for movie night on Friday, and then “Spirit” on Saturday. I liked when the monsters went through the doors to the children’s rooms and scared them. They got power for Monsterville by doing this. One night, one of the doors was left in place and Sully opened it and a child came out and scarred the monsters to death!!
Zoe said that she has had fun swimming in the local pools lately. She also learned how to do a “pencil” dive into the pool! This friday we are going to the Science Center. And we went to the library yesterday and I (Zoe) didn’t even check out one book!
(Ingrid chimes in) I played Blues Clues on the computer at the library.
Well, as you can see, the girls are constantly on the go within their minds and bodies. I love to see that confidence and unfettered imagination. The world will be their oyster as they become adults!
Peace everyone
Chris.....Theresa and Zoe
Thursday, June 16, 2005 3:26 PM CDT
Good afternoon all.
I hope this day finds you in good health. The girls have a new cousin! Baby Jacob Morgan was born yesterday to my youngest sister and her husband Rob. Mom, dad, baby and sister seem to be doing well. Way to go sis! It will be great to meet the little guy. Oh, I guess that I am inviting our family to your place in the near future ;)
Life around here has been as active as usual. The girls had a great weekend at aunt Joanies house and I had a good time with my Astro club. The weather did not cooperate with us as far as observing is concerned, but hey, that is the ultimate limiting factor in amateur astronomy. you can have the best equipment in the world, and if it is cloudy, hang it up. the girls took a boat trip through the Blue Springs Cavern! Ingrid’s most memorable moment was when they crashed into the other boat. When I brought the girls home on Sunday afternoon, they regaled me about their weekend for the whole trip home (1 1/2 hr). They really have a great time with aunt Joanie and cousin Heidy. Thank you sister and niece.
Well, It is time to prepare dinner for the urchins. So until next time, peace to all of you wonderful people and enjoy the weather. Get outside and get your hands dirty, it’s good for the soul.
Chris
Thursday, June 9, 2005 10:07 AM CDT
Good morning everyone.
Yes, a rare morning update.
Early in the week, the girls planned and carried out a “special party for Dad” day. This consisted of cleaning up their rooms, making well thought out I love you cards, bags of trinket gifts and decorations. Theresa was so proud of what they had done. Nothing warms one’s heart more than being on the receiving end of so much unbridled love. Thank you God for such gifts!
On Tuesday this week, the girls and I got a very well designed 8 person tent. I want to do some camping with them this summer and fall so the first thing to get is a place to stay. Sarah was totally uninterested in camping. She used to tell me horror stories of bugs, rain, sweat, sunburn and being very sick and unhappy during her trips. (No wonder she didn’t like it!) I, on the other hand, have always loved to camp out. I want the girls to have a great appreciation for camping too. I remember Sarah would say to me, “You can camp out with the girls, I’ll stay in a nice hotel nearby!” Ha!
Having said all this, the older girls were very interested in camping out in the back yard. So I set up the tent and let the girls stay out their over night. They had a great time. Although they didn’t get to sleep until 11:00 pm. (Does anyone ever get to sleep early during camping trips?) The girls only complaint, the ground was poking them in the back! So next on the list, sleeping pads.
Late last week, I began weeding out Sarah’s side of the closet. I know that it may seem weird to still have her clothes around, but their just isn’t much of a desire to do it. Eventually, most of her stuff will be donated. I hear her saying to me, “it’s just clothes!” Their are some items that hold very significant memories, while others have no interest to me at all. Shoes, shoes are always the hardest thing for me to get rid of. Because when I look at them, I see in stark relief, Sarah’s foot impression. In some ways, it is like having a plaster cast of the person. But, like most women, she had lots of shoes. Most of which had very limited usage. These were easier to donate away. When I have pared down all her possessions to the one’s that have significant meaning to me (us), I will make a beautiful chest out of cherry for storing them. It will be my last piece for her. A fitting tribute I believe.
Well, thank you all for your love, support and prayers. I pray for each and everyone of you.
Peace
Chris
Saturday, June 4, 2005 7:32 PM CDT
Good evening everyone.
Summer has hit the Ohio Valley. Temp. is in the mid to upper 80’s and the humidity is right behind! That seems to be par for the course around here. Spring lasts for a very brief period of time and then blam! Summer. At least the mosquitos are not too bad.
Early in the week, Sue took Ingrid to the peds. office to check out a rash she developed a couple of days earlier. I noticed it immediately one evening and gave her a bath and some special lotion. It didn’t go away, however, she did not seem to be itching or irritated by it. Anyway, The doctor’s office confirmed that she has... 5th DISEASE... 5th Disease? Yes, 5th Disease! It’s basically a very benign skin rash that can last for a while. A little benadryl seems to work.
On Wednesday evening, Theresa and I had some telescope time after Zoebo went to bed. She had been asking me when she could use her little telescope so I decided that now was the time. We looked at a few objects M-13 (a cluster of stars packed together) and M-57 (the ring nebula). She was really excited and began writing in earnest about the observations in her “sky diary”. She even drew some pictures to go along with it. I love her enthusiasm.
Several hours ago she began working on a 5th grade math unit in her Quantum leap pad system. She was struggling and fretting over multiplying decimals but did not want to let it go. Eventually, after much angst, she figured out the process (with begrudging acceptance of my help of course) and did some more. That reminded me so much of Sarah. Sarah would often fret quite a bit over not being able to figure something out. Especially something that was at the outer edge of her competencies. And asking for help was like accepting defeat. Some things are really genetic!
This whole week has been an active one for sure. I went over to Sue and Ralph’s house to lay some new flooring while Sue came over to our house to watch the girls. By Friday, Sue was beat! Ralph bounced around helping me and doing other work. Thank you so much for helping out! The girls love Grandma and Grandpa. And so do I.
Just a little while ago, our baby-sitter, came over with her sister and mother and presented a gift to me. It’s a 14 inch tall statue of an angel that looks very much like Sarah! The same hairstyle, complexion, body, eyes and even ear rings! How very special indeed. Theresa latched onto it right away. What a wonderful gift. Thank you so much! The two younger girls will enjoy it tomorrow morning too.
Peace to all of you tonight. Sometimes the veil that separates us from all those loved ones who have gone before us is very thin. And one day soon, we will be reunited.
Chris
Sunday, May 29, 2005 7:08 PM CDT
Happy memorial weekend everyone.
I have always felt humbled by all those who have served and even died for our freedom. It takes an extraordinary person to lay down their life for folks they don’t even know. Thank you from the bottom of my heart.
It has been a good week around here. Most of the sniffles are now gone (and thus the whinnies!). Louisville was rated the highest in the nation this year IN ALLERGIES PER CAPITA. Ingy still has some sniffles and some sensitive skin. I notices some red patches on her shoulders and forearms this evening after she played in the grass. Hmmm... I seem to remember a small boy several decades ago who had a lot of sniffles and rashes too!
Theresa and Zoe played out their too and they don’t have any indications of rashes, just lots of dirt.
Theresa, Zoe and Ingrid continue to grow and amaze me. Yesterday at the library, Ingy was working a Blues Clues program on one of the computers, and she was spelling the words! I said, Ingy you can’t spell, your too young! I am not thundered back the reply, and she continued to spell 3 and 4 letter words as requested.
Theresa is quite infatuated with “being a woman”. She uses comments about how a woman does this or that. Or, how difficult certain things are “for a woman”. It cracks me up. Her modesty and desire for privacy continues to grow. She now has her own room. I helped her discover this new web site called Funbrain.com. It is loaded with math, science and history games tailored to her age and ability. She eagerly spent a lot of time solving the games. Next week it will be on to something else!
Zoebo is not to be left behind. I checked out some books for her on phonics at the library and she devoured them all one evening. They were a little too easy I think. But the next one is the classic “Caps for Sale” and it should prove more engaging. She has such a different approach to reading than Theresa. Zoe seems to be following the pattern I did as a youngster and still do to this day. I read for information purposes. It is enjoyable for me to read as a way of learning about a particular subject I find interesting. Novels, mysteries and the like just don’t excite me. I’ll keep an open mind about Zoe’s developments, and we shall see.
Thank you everyone. Peace, and take care of your selves.
Chris
Sunday, May 22, 2005 5:02 PM CDT
Hello everyone
I trust that your weekend has gone well. It has been a rather sick one around here. Ingrid got the snots first, then Grandma, Zoe, Theresa and finally me. As a result, we have not slept too well and have felt a bit testy for most of the week. Ingrid has been getting up around 5:30 am and waking her sisters. Dear lord, please help this illness pass soon.
This afternoon, the older girls had their annual piano recital at Comstock hall on the U of L campus. Dr. LaBlanc has about 10 + students who take individual lessons from her at the school of music on campus. And once a year or so she has them play for us. Zoe got to go first because she is the youngest. She played a song (Dakota Melody) from memory and also a duet with Dr. D. (old macdonald). Theresa came 3 or 4 players later and played a couple of songs too. It is especially enjoyable to watch Miss T. strut out onto the stage, take a deep bow in front of the clapping crowd, and play very well. She is such a ham! It was a great time. Some of Dr. LaBlanc’s advanced students played very difficult pieces very well indeed!
Theresa played well and confidently despite having mashed her left thumb in the car door when we were at the park last week. It is healing up and she keeps asking me when will my finger nail fall off.
Fr. Bill F. gave an interesting homily this morning. He brought up the subjects of introversion and extroversion and asked the staff which one did they think God was. After some thought, the answer “both” came up most often. The whole discussion really got me thinking about where I fit on the scale. Most people are extroverts (about 75%) and the other 25% are introverts. It will not come as much of a surprise to most people that I am an introvert. Sarah was too, however she hid it well.
I ‘recharge my batteries’ by being alone and quiet in a beautiful place. Some of the best times I can remember came when I was bicycling on nearly desolate stretches of road in Montana. I remember stopping and just standing for long periods of time soaking in all the vastness of the place. Times like that really help me rediscover and reconnect with God and everything else. Now, being a single father of 3 beautiful girls, time like that is hard to come by! But it is still very important for me none-the-less. So in the near future, and from time to time, I will be taking a weekend away to ‘recharge my batteries.’
ps This is good advice for everyone else too!
Peace to all of you wonderful folks. And remember, you are in our prayers.
Chris
Tuesday, May 17, 2005 7:51 PM CDT
Greetings everyone.
Life is certainly in high gear around here. I got the go ahead to put finish on the first installment of display cabinets I am making for the Archdiocese, and I think that they look really great. Tomorrow is delivery day. It is always exciting to finish a project and show it to the client for the first time. And for me it is a wonderful feeling of accomplishment. Unlike most of us in the work world, I have a very real, tangible and uniquely beautiful object that will be of service for many, many years at the end of my day. My ability, whether good or not so good is on display for all to see. I have a little saying on my workshop wall that reads,” remember for whom you build”. It gives me added motivation.
This evening, miss T. was telling me about her “feminine beauty”. She was demonstrating grace, manners and all kinds of gestures. I had to do a double take a couple of times because she mimicked Sarah to a T! We discussed masculine and feminine roles, expectations and various virtues. It was a great time! We finished up with my standard statement about a mate: “If you decide to get married, he must treat you like a queen.”
Zoebo is beginning to really take off on the reading thing. She is reading the Amelia Bedelia series. It is great to be in the other room and hear her start laughing at the story line. She has picked up reading more slowly (pretty average really) than Theresa, but her enjoyment of it is firmly established. And that can only bode well for her as time goes on.
Ingy is not going quietly into the night. She has started to make her presence known quite forcefully lately. She no longer wants to be left out when her big sisters are busy doing something. Of course when the older ones want to do something on their own, Ingy will start whaling the mantra of “Zoe doesn’t like me anymore, or Theresa hates me!” It is amazing how big Ingy is! Sometimes I forget that she is only 3 because she is as tall as a typical 5 year old. And consequently, I expect things out of her that are a little too advanced for her age. Or, as Zoe would say to me, “that’s not age appropriate!”.
My oh my the girls are growing up fast! Thank you God for each and every day of it.
Peace everyone.
Chris
Friday, May 13, 2005 9:38 PM CDT
Good evening all.
Happy Friday the 13th! It’s been pretty good around here this past week. Yesterday was a big day for the girlies. The sleeping arrangements have been rearranged. Miss T. now has her own room and Zoe and Ingrid share the bunk beds. It has gone over famously. In fact a little too famously. The girls were up at all hours last night talking and carrying on. I came back inside late last night from using my telescope and I noticed that Theresa’s light was on. I opened the door and found her reading stories to Zoe and Ingy. I finally got them back in bed but they were back up by 6 or so.
Today they were whinny and tired! Imagine that! Later on in the day we went to Seneca park to meet with our TORCH home schooling group and have a play day. They are a good group of folks. Including another home schooling dad. Several of the parents are sending their children to the Latin School for additional study support too. They all have positive statements about the staff and environment. That’s good.
I noticed that my glucose levels were slowly starting to edge upwards over the past few weeks, so I started taking a couple of units of long acting Lantus insulin at bed time. This seems to have helped it come back down to the 95 -105 range. As they say, be as close to average as you can, and the diabetes related sicknesses and diseases will be minimized.
Thanks everyone for your prayers, Daddy feels a bit worn out tonight. Perhaps in a few days I will remember all the profundities that I have forgotten tonight.
Peace.
Chris
Sunday, May 8, 2005 7:38 PM CDT
Happy mother’s day from Derby town everyone.
What a wonderful weekend. We had chamber of commerce weather throughout, and a Kentucky horse beat all the favorites. Sarah use to tell me that when picking a horse for betting, choose your favorite and then place a 2 dollar bet on all the rest of the field. Therefore, if any other horse besides the favorite wins, you can make out pretty well. Somebody did that’s for sure!
Things seemed to happen in threes today. I told the girls that we would visit Sarah’s gravesite after mass and that they could bring something to leave there for her. At the end of mass, Theresa got a 3 stemmed carnation from an usher for mother’s day and we went to the gravesite. While there, all three girls had something special to put on the stone. Then they went to the creek and each found a beautiful flower too. Just befor we left, a lady came up to me and said that she had 3 beautiful pansies left over from plantings around another gravesite just up the hill. So we dug three holes infront of Sarah’s stone and planted the pansies. Sarah loved pansies too! It was very nice and uplifting all at once.
Later on Sue and Ralph treated us to a very nice lunch and associated conversation. They are good people and life is much more enjoyable with them around. And of course the girls love them to death. I think Ingy has grandma wrapped around her finger and Zoebo can melt grampa’s heart with a flash of her smile and eyes!
I have said this many times, and I mean it sincerely; you and your prayers are so special to us. We feel so very blessed by all of what you have done for us over the past few years. Thank you from the very depths of my heart. I pray for each of you and especially all you mothers out there, peace.
Chris
Monday, May 2, 2005 7:02 PM CDT
Good evening everybody.
Long time, no hear! Well I (we) have not fallen off the world. I just figured that I would post the next update after all my meetings with various folks. I have made a decision after a great deal of prayer and discernment to take the two older girls to a 3 day a week small cottage school named the Highlands Latin School. Yes, it is the one Sarah and I had talked about numerous times a few years ago. This school is the best fit I could find for a homeschooler in my situation. They cater pretty heavily to homeschoolers and in the later grades, even offer individual courses. This will help free up my midweek schedule so I can focus more on projects. Ingy will still be with me, but that is no biggie.
I am tired but happy. the conclave is over, it is time to start anew!
Peace and love to all
Chris
Wednesday, April 27, 2005 7:45 PM CDT
Hi everybody.
Spring is marching onward around here. Lots of growth and change. (And that’s just the girls!) As I mentioned in an earlier post, this past two weeks or so have been filled with some very intense grieving for me. But finally all seems to be subsiding. My blood sugars are coming back down to where they were for months prior. Stress really does cause some amazing reactions within one’s body. Incidentally, my A1c is 6.1. The endocrinologist thinks that I am doing great. And I agree.
During the next several days, I am meeting with other home school folks and doing a private school tour with a principal. Still gathering info and praying for the best approach regarding the girls education. Nothing has jumped out at me as being better than what we are currently doing. Every option seems to have it’s plusses and minuses. There is a reason why there are around 3 million kids home schooled now a days.
Thank you everyone for your prayers, affirmations and phone calls during the past few weeks. Some days I feel like a salmon fighting the current. And I just wish it all went away. Other days I realize how incredibly blessed I am to be right here right now. There is no doubt. This time is about the most challenging of my 42 years. And it is in this challenge that I understand how really dependent I am on God’s graces.
Peace to you this evening.
Chris
Thursday, April 21, 2005 8:17 PM CDT
Hi everyone.
My oh my what an emotional roller coaster I have been on over the past several days! One day I am fine and the next I feel all knotted up inside crying with grief. This afternoon was the worst. I thought that I had pretty much walked the grief path by now, until I remembered what day it was and the cause.
One year ago I found out that I had diabetes. The feelings I have been having are very similar to what I had at the hospital in late April of ‘04. (failure, inadequacy, rejection, betrayal, loss, etc...) It was such a tremendous blow to my ego. Especially on the heels of the loss of Sarah. The old one, two punch! Boy did that ever hurt! And unfortunately, those feelings have surfaced again. But one thing I have learned over the past year and a half is that feelings are just that feelings. And if you let them have their day, they will pass and life will move forward more strongly. The most important thing is to let them have their day. Otherwise, they come out in other ways and usually at the expense of someone else! (Sorry if I have offended anyone lately!)
On to the conclave. Conclave? The girls schooling conclave that is. As I mentioned in an earlier post, I am taking some time to really think, pray and research the best situation for the girls and me. One that gives me a little more quality time with myself, clients and their woodworking projects, as well as gives the girls a little broader exposure. We are blessed to live in a community that has a surprisingly wide range of academic experiences to chose from. I will continue talking with several other homeschooler parents and other folks, while weighing the plusses and minuses for my own situation. Your prayers are greatly appreciated.
Well, thank you everyone! I wish I could be more cheery tonight, but then that wouldn’t be real. Peace to all of you.
Chris
Tuesday, April 19, 2005 4:32 AM CDT
Hello All.
Thank you all for your concerns, comments, support and worries over the home schooling issue. I will take them all to heart as I prayerfully discern over the next few weeks the best move for my family.
Peace and love to you all.
Chris
Wednesday, April 13, 2005 7:58 PM CDT
Hi everyone,
I love spring. Several years ago I planted two red bud trees in the front lawn. Last year I lost one in a storm, but the other one is especially beautiful this year. The lawn is covered with blue violets too, so the colors are a deep grass green, blue violets and the pinkish purple red bud. The neighbors have white and pink dogwoods which also add to the view. Of course the birds are going nuts too. And finally, warmer weather has arrived!
This weekend, the girls are visiting their aunt while my brother helps me build a shed / observatory. The weather seems like it will cooperate for us and as usual, the girls are excited about their visit. It will also be good for me to spend some time working on a project with my older brother Thom. He has got a good head for this type of thing, and frequently he has ideas that I had not even thought of. So hopefully, Saturday evening we can do a little star gazing in the new observatory.
Theresa wanted me to mention that she is having a ball studying the various ancient mythologies. Earlier in the week she read about Hercules’ labors and the Island of the Minotaur. Today, she dove into Egyptian gods, goddesses and mummies. She is so excited by it. Every week she wants to use her regular Thursday library day to study a different mythology. I think Norse is next up. Zoebo is trying not to be outdone by her older sister. Her topic this week is on food. She picked up a silly easy reader cook book.
A lady asked me the other day, “man when do your kids get a spring break?” I said to her that the girls do not even have the concept of a spring break. For them learning goes on every day of the year and at all hours of the day. That got me thinking about home schooling, so tonight I will explain our form of home schooling in better detail. Because I think that many of you have questions too.
The method of home schooling I use is called, “child centered learning” or the more common term is “unschooling”. Unschooling developed out of the proven belief that children are intrinsically curious about their world and want to learn. Over the past 25 to 30 years, this form of home schooling has become increasingly popular. It is however, very unlike a regular school. Therefore, most people have a blank stare of disbelief when I explain it to them. We products-of-the-regula-school-system, have been taught that you learn specific things at specific times along with a regimented schedule. In unschooling, the child’s curiosity leads them along and I am their guide.
As a consequence, the child (children) develop various aspects of their core subjects at different speeds. The dramatic benefit is that their love of learning is genuine, intrinsic, and often blindingly fast. The whole world is literally open to them. There is a GREAT deal of information available on the web concerning unschooling. Check it out if you are interested. 99.5% of the questions you have about it (and home schooling in general for that matter) will be answered there. Some people are almost militant in their support of it. I happen to find that it is a wonderful form of education for the girls that really fits the lifestyle we have here.
I was not an easy convert though. It took a couple of years of “show me don’t tell me” in order for me to buy into it. I read a lot about it, and talked to other homeschoolers. And now I can see the girls blossoming in wonderful ways. The biggest problem I have is getting out of their way!:)
Peace to all of you. I pray that you are in good health tonight and that spring has sprung where you are.
Chris
Friday, April 8, 2005 8:03 PM CDT
Hello everyone
I hope you all are doing well today. It has been a surprisingly tough one for me. Tough in the sense that a whirlwind of negative feelings overwhelmed me. A convergence of events seemed to gang up on me. The Pope’s funeral mass got me because it was the same funeral mass that we had for Sarah, albeit much more grand. The second thing was that I went to the endocrinologist’s office for lab work. That simple act reinforced the fact that this body of mine I used to think was in such great shape is fragile, and I have to accept that. So some loneliness, sadness and even feelings of betrayal filled me up today. It was interesting though, as the day wore on, I just let those feelings out and now they are fading away. Each day is new. Life without Sarah, my beloved wife will continue. It is different, and more changes await us in the future no doubt.
Onto some more enjoyable notes! A couple of days ago, I was looking at Sarah’s favorites list on AOL and rediscovered some funny sites she saved. I called Theresa over to look at them and she had a great time. One was Pavoratti singing to elephants, and another was “things you can do to a fish when you are upset”. Theresa couldn’t wait to share them with Zoe in the morning. I could picture in my minds ear Sarah laughing!
Theresa decided to learn about Greek Mythology the other day so we went to the library and she checked out books on the twelve labors of Hercules, and the island of the Minotaur. She devoured them and quizzed me all day long on various aspects of their content. (I didn’t do so well..... it has only been 25 years since I learned the stories!)
I was changing the oil in the white car yesterday and Ingy was helping me. She is a good little helper. Somewhere in the middle of changing filters she said, “daddy, what does
- realistic - mean?” It caught me off guard a little and I had to stop and think of a good answer. She accepted what I said and then she used it correctly in a sentence. What a sharp little cookie.
Peace to you all tonight.
Chris
Friday, April 1, 2005 5:53 PM CST
Hi everybody.
Happy April fools. I don’t have any memorable jokes to play. They take too much effort. Theresa asked Zoe if she was tired this morning. Zoe said no, I just got up. Theresa then said, well you should be; you have just been through a 21 day March! I had to inform Miss T. that it is a 31 day March, not 21. It didn’t matter, they both laughed anyway.
The girls have been very busy learning and exploring this week. (Read, wearing dad out.) We went to their favorite store on Monday, Hobby Lobby. I gave each of the big girls $10, and Ingy got 5. The rules were simple, you can purchase anything you want as long as it meets my approval first and is within your cash budget, tax included. They were so excited! Of course they had to stretch their math brains. They each got some modeling clay, miniature items for their dolls, craft paper, paint brushes and other stuff. The most interesting thing is that Zoe’s total equaled $5.43. While Theresa’s total was $10.02. Zoe figured that she could use some of Theresa’s stuff at some point so she settled for less and saved the remainder of her cash. (I happened to have 2 pennies for Miss T. and Ingy bought what ever I said.) A great time was had by all.
A day or so later all three girls were doing something secret and quiet in the bathroom. I always get a little nervous when they are quiet. However when I inquired as to what was happening, they all yelled back that “daddies are not allowed, we are in ‘Girl Lab’”. Half an our later, Theresa arrived in the kitchen with 3 different potions in various bottles for me to smell. They came complete with a 1 through 5 grading scale, and a list of ingredients. I liked number 2 best and gave it a 5. It was fun. However the bathroom was a mess.
Random thoughts tonight. I have been thinking of Terri Schivo, and Pope JPII. It has been really interesting and valuable to see the valiant struggle these two have shown us. I believe that there is tremendous value associated with enduring such suffering. Struggles can purify us and help strengthen others around us. I remember soon after JP became Pope in about ‘83. He traveled back to his homeland of Poland and met with hundreds of thousands of people in a mass around the city of Gdansk. The Communist puppet government in Warsaw at that time got VERY nervous. He turned around and said something stern to a government representative behind him and the rep. nodded very rapidly and then ran away. Within a very short time later, Communism collapsed in Poland. You talk about power! I knew at that moment, that the church had a tremendous leader for years to come. He will be sorely missed when he passes.
Spring has finally sprung in the Ohio valley. I love seeing the dogwoods, magnolias and red buds coming out. I even cut the front lawn yesterday.
Thank you everyone for your prayers and thoughts for us.
Peace,
Chris
Sunday, March 27, 2005 3:39 PM CST
Happy Easter everyone!
I hope this day is filled with peace and promise for you.
I want to thank so many of you who have helped make this Easter very special for me and the girls. Thank you Kathy and Bruce, the outfits you got for the girls were a BIG hit. (The girls had to give me a fashion show before mass). Thank you too Cathedral choir for your wonderful letter. It‘s incredible to get a heart felt letter with 20 to 30 signatures on it. I will say a special prayer for you this evening. Thank you also Mrs. Maggie. The girls are at this very moment playing with all the stuff that came in each of their Easter baskets!
Thank you too Jean and Tony and family for your wonderful hospitality and great guests. I always know it will be a special time for us when we come visit. Thank you too Grampa and Grandma Hughes, life would be much more challenging for us without you here!
Peace to all of you this day. Thank you too all you “imaginary friends”, as Sarah would say, who keep us in your prayers, and keep in touch through the internet. My family is much richer because of you.
Chris
Wednesday, March 23, 2005 8:50 AM CST
Hello everyone
I went out this morning for a jog when many things about the Terry Schiavo case became very coldly clear to me. The thoughts came to me as parallels to the passion and death of Jesus. Here is how it came together to me:
I thought of last Sunday’s reading of the passion of our Lord. The story line should be familiar to many.
Jesus had his last supper with the apostles: Terry had her last “supper”
Jesus was betrayed by Judas: Terry is being betrayed by her husband, probably with kisses and for money too.
Pilot washed his hands of Jesus’ innocent blood: Our president and congress appear to have done the same.
Jesus is condemned to die by the courts: Terry is condemned to die by the courts.
Crucify him! Crucify him! Shout the crowds: Let her die, let her die shout the pro death crowds.
There are probably several more parallels to this case that I have not come across. However you see this whole scenario. Just ask yourself, when was the last time In America that the courts directly condemned an innocent person, who had no trial, committed no crime and was not on life support to death through starvation at the request of another person?
Terry’s mothers name is Mary. Jesus said whatever you do to the least of my people, that you do to me. This is happening during Holy Week, and Terry is Roman Catholic. I wonder if she will die on Friday this week! Need I go on!
Terry’s life and probable death in this situation has been a tremendously powerful gift to us all. She has helped focus the attention of the whole nation onto this major struggle over the culture of life and the culture of death. It is time for us to make a decision.
Peace everyone.
Chris
Saturday, March 19, 2005 8:33 PM CST
Good evening all you wonderful people.
I hope that this past week has been a good one for you. It sure has for me. Actually, this past Lenten season has been very special for me. (More on that later).
Thank you Mrs. Joan for taking the older 2 girls to the puppet show this afternoon! They came back laughing and talking about it off and on for the rest of the evening. It was a little hard to get the gist of just what went on because T and Z would start talking faster and faster. Eventually I could not follow what they were talking about! But their laughter gave all the answer needed. A nice benefit was that I had Ingy all to myself, or rather Ingy had me all to herself for a few hours. We played a few games and worked on a puzzle. She likes to get right into what ever I am doing.
Not a day goes by when I don’t think about how blessed I am with these 3 girls. It is incredible to watch them grow and learn and develop. Theresa is most often in the lead when a new topic is at hand. Then she thinks of an activity to incorporate what she has just learned. Zoe is almost always the willing accomplice / partner. And Ingrid will often just jump in and start playing with whatever is available, (whether the older girls approve or not!).
A wonderful picture of how their minds work comes through their play. They are learning so much in this fashion that almost everything we do eventually will incorporate an element of “play”.
One morning I got up from bed and listened. The house was mysteriously and uncomfortably quiet. I had to investigate. When I got to the living room, I noticed that the girls had dumped the trash can on the floor and were making elaborate “trash dolls” for their elaborate “trash city”. They ran up to me all excited and flooded me with information about their creations. I forget the first words out of my mouth, but needless to say they were not “wonderful” or “fantastic”! But after a minute or so I realized that they were really using their brains and having a wonderful time making a mess. They did clean up before breakfast!
As I mentioned earlier, this Lenten season has been really good for me. I have taken more time to pray, listen to Catholic radio and read scripture. It feels like the pieces of my life, (our lives) are coming together in a new and richer way. The broader picture of purpose and opportunity is becoming more clear. And when that happens, peace, understanding and thankfulness naturally flow in. All the stuff about life with little kids is still there, every day, but the weight of stress and uncertainty is diminishing. In so many ways, I feel like God has a very special purpose for each one of us. And our goal in life is to discover and use the gifts we have been given to make at least a tiny part of this world a better place.
Peace everyone, have a great evening.
Chris
Tuesday, March 15, 2005 6:49 PM CST
Hello everyone.
Just a short update tonight, I have been working hard on a big project and sleep is calling my name.
Well, the girls enjoyed staying at Aunt Joanies house last weekend and I enjoyed the star party with the Louisville Astronomical Society at Taylorsville Lake. We both got back together Sunday afternoon tired but happy. Joanie ran the kids ragged while I stayed up late each night observing stars.
I’m ready for spring, are you?
Peace everyone, thank you for your love and support.
Chris
Thursday, March 10, 2005 8:32 PM CST
Good evening all.
Well, my sister Joanie has the girls for the weekend. And I am free. This weekend, my Astronomy club here in Louisville is holding it’s first Star Party at a local state park. It’s basically a three night observing / camping session with talks and food thrown in during the day. The hope is that at least one of the nights the sky will cooperate and allow us to use our telescopes. The club president expects about 40 to 60 participants. Oh, did I mention that we have to camp? Time to break out the super duper -20 sleeping bag! (The things some of us will do to see the wonders of the night sky!)
Earlier this week I was cleaning out “Mini Pearl” and came across an old Evensong tape of a concert Sarah had done with the group. It was her last one, a couple of months before the cancer ordeal started. I hesitantly put it in and it was all cued up to a beautiful piece where Sarah had a major role. I melted. There she was, bigger than life singing that incredible beautiful and difficult Latin renaissance music. Tears just flowed. There was this sense of “oh my dear I miss you so much” and a sense of peace induced by the angelic sound of whole piece sung by very talented vocalists. It was as if Sarah was saying to me here is a gift from heaven to you. Thank you my dear.
A day or so later I was making lunch for the girlies and happened across Sarah’s old hand written recipe book. I picked it up and it opened very easily to a recipe that said simply, “Heavenly Peanut butter Cookies”. The girls were excited by the title, so we all made Sarah’s cookies. They were very good and the girls thanked mommy after chowing them down.
The tooth fairy came to visit our house again two days ago. Miss T. lost another main tooth. Zoebo is not going to be outdone. She has another loose one that will come out very soon I think.
So this week has been pretty good. I am busy working on a new project and working with the girls. My health has been very good. I am learning all the time about diabetes and the often complex interactions various foods have on blood sugar. In fact, I have developed a great and very healthy diet over the past many months that is really quite amazing in what it has done for me. I am seriously toying with the idea of writing it out and explaining the interactions and rationale behind it. (I can see it now, Chris the diet book guy). Perhaps I need my head examined!
Thank you all for your love, prayers and wonderful support. This web page is kind of like therapy to me and the girls.
Peace to you all.
Chris
Friday, March 4, 2005 8:25 PM CST
Good evening everyone.
Well, we had a good trip. And it felt nice to just forget about the busyness of life and the cold around Louisville for a while. We left at 1:30 am Friday morning and arrived in Gulf Shores at about 2:30 pm. Within an hour we were on the beach soaking up the rays. The girls were even playing in the waves. The water was a little too chilly for me, but they loved it. Their faces gleamed with sheer delight. Of course when they were done, they smelled like sea water and were full of sand.
Slowly but surely, Theresa, Zoe and Ingy are becoming pretty good travelers. Excitement got the better part of them on the way down, so they didn’t get much sleep during the night. However they had plenty to keep them occupied. As the day progressed and we neared Gulf Shores, Zoe started singing “we three kings of orient are, smoking on a loaded cigar, BLAM!... We two kings of orient are smoking on a loaded cigar, BLAM!... You get the picture. After a while they started at 25 kings then 30 kings and worked their way down. Do you remember as a kid singing -99 bottles of beer on the wall- during a trip? Some things never change.
The damage to the area from the hurricane was still quite evident. Many, many leaning and destroyed houses and businesses. Most of the homes and condo units are built on 8 to 10 foot high pilings in case of such a disaster. But from what I could tell by water marks and such at my folks condo, the storm surge that came ashore was about 18 feet high! It also traveled inland about a mile. The folks there are doing a great job of cleaning up. It’s just such a big job that it will take years to fully complete.
Thanks Mom and Dad for your generous hospitality. As I said earlier, it is very nice to get a break from winter. Our return trip was as equally uneventful except for the fact that it took about an hour less to get home. We did not hit any red lights that I can recall! I think Sarah was helping us out :)
Peace to all of you from our family to yours.
Chris
Wednesday, March 2, 2005 7:02 PM CST
Hi everyone.
We made it, and had a good time. I will fill you with the details during the next couple of days. Right now I am BEAT.
12 hrs in the seat.
Thank you for all your prayers. They worked!
Peace,
Chris
Tuesday, February 22, 2005 7:03 PM CST
Good evening everyone.
I hope that life finds you all in good health and spirits.
Our trip to Gulf Shores is fast approaching. The girls spent the day with Grandma cleaning out “Minny Pearl” and playing, going-to-Gulf-Shores games. (Minny Pearl by the way is the name that the girls gave to our mini van.) It was funny to watch them go to a pretend rest stop. Needless to say, they are excited. I am ready for a break in the weather too. Also I love to drive to far off places. (I still have that deep down desire to explore and see new things.) My Aunt Annie use to call me Christopher Columbus when I was a little kid. I take that as a complement!
I made a decision after Sarah died that I would not give up exploring, learning and challenging myself. Even though it could be more difficult with the girls. Our family basically put many aspects of life on hold during Sarah’s illness. We all wanted to do more things with and without family, but chemo schedules and incessant pain stopped that. In many ways there is a new found freedom in our family. Sarah and I would talk about the tremendous advantages of home schooling, like taking trips on our own schedule to the actual places and events of history. The girls and I look forward to learning about the effects of a hurricane!
Ingrid is acting like she wants to read. The other day, she and grandma were passing some stores and Grandma would ask her what that store name was and she would look at the marquee and say its name. I have also found it more difficult than usual to read to her because she wants to read the words to me. Soon I think, soon.
Well everyone, I will be busy packing and prepping during the next few days so I may not be able to update before we head out. However, I will update from the local Gulf Shores library after we arrive.
Peace to you..... And pray that we have a safe and SANE trip.
Chris
Friday, February 18, 2005 7:10 PM CST
Hello everyone. I am taking dictation from Theresa tonight. Here it goes.
Tonight we watched Sailor Moon titled Love Conquers All. It was a great movie! And I liked it when they beat the Doom Phantom! (‘They’ are the Sailor Scouts.)
Zoe got some interesting Pokemon cards today. We are reading books called The Chronicles of Narnia. We are almost finished with the Silver Chair. Pretty soon we will be on the last one called The Last Battle. I have been realizing something about those books. Mostly they are good stories and interesting stuff. And it seem like Aslan is God and Narnia is like heaven and the kids get a chance to visit. And it is like Aslan helps them out in tough situations. Once they were stuck in the Underworld and Aslan helped them find the path out (through Jill.) And eventually, in the underworld, before they got out, they found who they were looking for, Prince Rillian (the son of King Caspian.) And now we (daddy and me) are right in the middle of the last chapter called, ‘the healing of harms’ .
I can’t think of anything else, so I will turn it over to daddy. Bye.
Miss T. is funny sometimes. Her mind is going a hundred miles a minute so her thoughts get stuffed together. She forgot to mention that we are going to Gulf Shores in about a week. Theresa asks me every morning and often throughout the day “how much longer daddy”. I recycle the answer my grandpa Gulden used. “In a little bit.”
Thank you everybody for reading, checking in on us and praying for us. I can’t help but feel extremely blessed and thankful so much in life.
Peace,
Chris
Sunday, February 13, 2005 7:43 PM CST
Happy St. Valentine’s everyone.
The girls have been making and giving valentines cards to lots of people. It is wonderful to see the love in their hearts beaming through. What gifts they are. Sarah used to love the Necco wafers and conversation hearts on Valentine’s day. She didn’t want anything out of the ordinary but them. It was kind of ironic that yesterday, I found a frozen bag of the conversation hearts in the freezer fridge. The girls also love them so I guess that the annual gift will continue.
A neat thing came about last Tuesday along the same lines as the hearts. I found a pizza frozen and double wrapped in the bottom of the freezer. I took it out and realized that Sarah had made it! Just before I doctored it up and put it into the oven, I called the girls out to see it. You could see Sarah’s finger prints on the crust where she pinched it. The girls were excited and very happy. It also sent a tingle up my spine because I realized that she is still “feeding” this family. After dinner, the girls said that was the best pizza ever! Thank you my dear.
The Lenten season is upon us and it is a special time for us Catholics. It’s when we (in our own small way) emulate Jesus during his 40 days in the desert before his passion and resurrection. Regular fasting and abstinence from meat on Fridays is the general rule. Most Catholics also give up something they enjoy as a way of connecting a little bit better with Christ’s fasting in the desert. This year for me, I have added more time for focused prayer a couple days each week. I would highly recommend this practice to anyone who feels hurried, worn out or tired at the end of the day! What I do is really pretty simple. First I get the girls to bed so it is nice and quiet. Then, I read a scripture passage for something to think about. After that I just start quietly talking to God, thanking him for the things and events of the day and just letting the thoughts flow. I also ask him to release my fears and worries and replace them with joy and hope. The whole process takes about half an hour or so. The net result is that I have felt really good and refreshed during the past week or so. Mom always said, “don’t sweat the small stuff”, and that I have found is where most of my anxieties lie.
Around the end of February, the girls and I are taking several days vacation in Gulf Shores, AL! My folks are holed up their during the winter and I have invited us down. They are happy we can make it. It will also be a very good home school field trip. We will study the effects of hurricanes! Mom and dad say that it is pretty devastated down their and many things have changed. It should be an interesting (and WARM) time.
Thanks everyone for your continued prayers and support. YOU make this burden lighter for us all.
Peace
Chris
Tuesday, February 8, 2005 7:26 PM CST
Good evening everyone.
Illness has struck the family this week. First Grandma Sue got it, then, or about the same time, Ingy got the snots, and finally, o’le dad got it. It all seems strangely familiar to last year at about this same time. But thankfully, we are all on the mend.
Zoe commented to me earlier in the week, “ It must be hard being a dad,” as I hacked and coughed and blew my nose. She is definitely right at times. Especially when feeling sick. No staying in bed for the one who makes 12 meals/ day! What did help was getting the big girls on my side a little more than usual. Thankfully they did not get sick (yet?). So Theresa and Zoe both did as I asked a little bit more often. That made things easier.
Ingrid has become much more talkative lately. She also has decided to become modest and even more independent. Almost every time now she will tell me when she has to use the potty. But she wants to do it “by my own self” and in private! That would be great, except for the one little fact that she can’t wipe well yet! So there is this little drama that unfolds each potty session. Wipe me daddy, but don’t come in.... Ah, the life of a daddy.
Sarah has got to be laughing.
Yesterday all of us went to our local Meijer’s store for biweekly sustenance. It was a rather difficult trip because of how I was feeling and the general whinnies of the girls. But when we got to the checkout line, A very nice clerk asked how the girls were doing. I gave her the usual blunt but accurate response. She commented on how nice the girls were and how well they were dressed. She said a few more positive comments about how well they were being raised and ended her comments with I bet you wife is proud of you. When I told her that Sarah died January of last year, she said “I know, and I bet she is very proud of you and the way you are raising them.” That felt really good to hear. Thank you clerk, and thank you my dear.
Peace this day everyone. God has great and unexpected ways of lifting our spirits.
Chris
Thursday, February 3, 2005 7:35 PM CST
Hi everyone.
Today was Zoe’s 6th birthday. Sometimes it is hard to believe that she is that “old”. The day was filled with excitement as Grandma and Grampa Hughes put on a birthday dinner for her. Zoe got some great gifts from many people. And with each one, she was so excited! Sarah loved to call her “Zoey-woey-oh” as a term of endearment. Yes, our middle child is certainly full of joy and sound and energy! It is wonderful to see her beautiful face just light up with delight.
A couple of days ago I found a real treasure in a writing desk next to our piano. It was a journal written by Sarah about life during her pregnancy with Zoe. I scarcely remembered Sarah writing it. But now this journal has taken on added significance. She started it in August of 1998, and finished up about 2 months after Zoebo’s birth. I read a few passages at the dinner table. I think that Zoebo will really treasure it as she gets older.
Here is a short passage:
“Dr. Brown did a very quick informal ultrasound. I don’t think I’ll take any more peeks inside unless there’s a real medical reason. There’s nothing they could find that would keep your daddy or me from wanting you...... Theresa talks to you & kisses my belly button a lot. I want so much for you two to be special friends. She is a very smart little girl & so loving. We can’t wait to see you in January. We love you xoxo.”
I’ m glad that Sarah got to see how close Zoe and Theresa became over the next few years. Sarah’s presence is so wonderfully knitted into these three angles.
Peace, and thank you all so very much for your support. We continue to send prayers your way too.
Chris
Monday, January 31, 2005 7:58 PM CST
Good evening all.
Well, I had a great trip. I went to Boca Raton, Florida for the weekend, “by my own self” as Ingy would say. I did not tell you all about it on the last update, because I did not want my aunt to read the web site and find out that I would be in town. You see, my cousin Marci planned months in advance and flawlessly executed a surprise birthday party for Aunt Jean! There were about 65 of us family members, friends, and acquaintances who shouted SURPRISE! when she walked in the door of Marci’s place. It was really great!. My brother Matt and I flew in from different towns and met at the Ft. Lauderdale airport on Friday afternoon. What a great chance to wander around in shorts, talk to family, relax, check out the beach and pool, and get a quick sun tan! The whole weekend was just what I needed. Matt and I both agreed that a trip to south Florida around this time of year should become an annual thing. Great job Marci, Thad, Todd and all who helped pull off this surprise!
What made the whole thing happen for me was my sister Joanie. She and her daughter Heidy gratefully entertained all three girls for the whole time I was gone. Kudos to Sue and Ralph for helping out too! There help enabled me to get away without worry. Thank you all so very much!!
This was also the first trip I had taken without Sarah. The sadness of her absence hit me most strongly when I drove her old car back home from the airport. I thought of the many times she drove the car to the airport, parked it for a few days while on a business trip, and drove it back (with dread) to her home and former husband in Oldham county. As I was feeling sad, I also remembered her telling me numerous times of how very happy she was coming home from trips to me and a family life that was everything she loved. So my sadness was rather short lived. Thank you my dear.
So it seems like the girls had a great deal of fun also. I asked them if they missed me, and all three said a resounding “no!” So I asked them if they were glad to see me. To which they responded with resounding “yes!” At that point they all three proceeded simultaneously to jabber my ear off about their great adventure!
Peace everyone, I am truly sorry that you had to endure snow and ice while I was away;)
Chris
Thursday, January 27, 2005 9:23 PM CST
Hello everyone,
Just a quickie tonight. I am taking a well deserved mini vacation this weekend. My sister has taken the girls till Sunday so that gives me a few days to relax, reflect, and renew. I will fill you in on the developments upon my return.
It is a very good thing to get a break.
Peace and love to all of you.
Chris
Friday, January 21, 2005 8:32 PM CST
Hi everyone.
This is the night. The start of the first anniversary of Sarah’s passion and her eventual death at 7:05 am tomorrow morning. So many memories both beautiful and horrible, so much pain and helplessness, and at the end, so much relief. Her suffering was over and she won! My how quickly it happened! I don’t even know how to start writing about that night. So I will just ramble as thoughts come to me.
Time, time gives one a perspective on events that can be found in no other way. Often as a kid, I would wished that time could speed up or vanish so that I could be done with a particularly unpleasant event. I remember thinking last year at about this time those same thoughts. Please take it away from me Lord. We have a very tough road ahead and I wish that I could just snap the fingers and poof, all is gone and life moves merrily along.
The reality is that this past year has been so profoundly intense and life-changing, that my family (and me in particular) could not be where we are today without Sarah’s death. God has chosen a path for us to walk down that is leading us closer to him. In some sense, I feel that our struggles and triumphs as a family and individuals has had a much wider positive influence than is realized. Perhaps God is using us to help others come to grips with their own struggles through our story?
Last Sunday we had a closing hymn at church that really caught me. And it figures that I can’t remember what the name of it was, but it had a particular line that, for me, really summed up Sarah. It mentioned going to heaven when your “commission” was done. That word “commission” just opened the flood gates in my mind about Sarah. Her “commission” on earth was to have children! I know it may seem pedantic but that really was the deepest yearning of her heart. Sarah’s prolific journaling testifies to the fact that for decades she felt this calling to bring children into the world. Her years as an RN focused mostly on helping women, babies, reproduction and enabling women have a wonderful experience with natural childbirth. At one time we sat down and figured out roughly how many births she had been actively involved in. It numbered in the THOUSANDS! She even served as a Doula while she had cancer.
At every turn, Sarah loved tiny babies. I remember seeing her face light up so often when she would talk about a birth. And how incredible it was to be the first person to touch a new human. Every one was special and unique. And when she had her own, I was right there to be a part of her miracle. Her most incredible birth to me, was that of Ingrid, our youngest. Because Ingrid and the colon cancer were growing side by side. And if Sarah had known that she had cancer while carrying Ingrid, I am absolutely certain that she would have still carried her to term before starting treatments. Two days ago I heard one of the most ironic coincidences. The Roe vs. Wade case was settled by the supreme court on January 22nd. 1973.......
New, what is new. I feel new. In many ways, I feel privileged to have been such a deep and integral part of Sarah’s life. Her life and death have continued to shape me, as well as our girls and family, into new people to a greater or lesser extent. Folks have asked me when will you get married again? I simply tell them that God is in charge. When your deeply loved spouse dies, you really begin to understand just how little “control” there is in life. And the main focus of life needs to shift to celebrating the incredible gift that each day, each moment is to us. And that an attitude of thankfulness to God for the moment right now is what is most important. Now that’s not to say that responsibilities are not met, or goals are not set. It simply means that when God is the first priority, all other things will settle in the right order and way. Just don’t pretend you know exactly how that way will be!
Thank you everyone. Again and again I mention how blessed we are by you. So many of you really do care so much for us. We continue to feel your prayers and love.
Peace to all of you, and peace to you my dear. I hope your first year in heaven has been a real hoot!
Chris
Sunday, January 16, 2005 6:58 PM CST
Hello everyone, Chris is taking dictation from Theresa tonight.
I’ve been starting some news files to my newspaper called the Poke’mon gazette. So far I have stuff on interesting Poke’mon. (They are these little creatures). The newest one is called Deyoxis. He is from outer space they say. Today we made some paper things on strings. We call them mullineum items. Also, Ingrid and mostly Zoe got me up very early this morning. So I took a short nap later on in the afternoon.
I’ve been thinking lately that mom is looking down and seeing what we are doing. She is reminding us to do the right things. Like I have to remember the ten commandments and follow them too. And mommy helps me to remember them and follow them too. She is a big help now-a-days! I like it because sometimes if we find something that was lost for a long time I hear her saying (in my head) “It’s a murrical!” And also I have been doing a lot of interesting things lately like building a Ferris wheel. And then I made a boom ride too!
Lately, Zoe and Ingrid have been eating a lot at mealtime. One day it seemed like Ingrid ate 15 hot-dogs! And one morning at breakfast it was like Zoe ate 3 pieces of toast and 9 bowls of cereal! Also we are planning to put a new design in our room (if dad will let us.) So Zoe and me have gotten out butterfly sheets and played a game with them. Zoe is Andromeda the princess and uses a sheet as a cape, and I am Ashezu a queen. And I Wear my sheet as hair. (Because Ashezu has long black hair).
Zoe is also learning how to ride her two wheeled bike because her training wheel broke.
Theresa.
Stream of thought talk. I love it. Peace to all of you. We are OK.
Chris
Thursday, January 13, 2005 7:30 PM CST
Good evening all.
I hope that life has been treating you well. The girls sure keep busy by growing and stretching their minds. Earlier in the week, I had this plan to get Theresa to memorize her multiplication tables. The plan was to get her to memorize a set per day. 2 times, 3 times etc. Well..... She blew that out of the water. After only 2 hours, she had all the table up to 6 times, as well as division, completely memorized! I stopped because I couldn’t believe that she had it all in her brain. So I would ask her at various times during the day different multiplication's “what is 6 x 7?” and she would answer correctly within 5 seconds or so. I love it! Now if I can only get her and her sister to clean up their room!
Another funny thing happened this morning. Theresa and Zoe got ice cubes out of the freezer and put them in their shirts. Then they ran down the hall yelling “boy! is that brisk!” What a hoot, as Sarah would say.
On Tuesday this past week. Theresa got Zoe and me together with her to share something that she had made for us at the Hospice Bridges Center. It was an interesting paper bag with a pretty bow on it. It was addressed to “My Family, from Theresa and Mom”. Inside were colored paper cut outs of butterflies, bears, stars etc. with questions on the back. Theresa had each of us draw out one paper cut out at a time and read the question on the back. One was, “What was mommy’s favorite holiday?” Another read, “One thing mommy always said was...”. Whomever read the cut out had to start the discussion about the topic. It was great!! This gift allowed Theresa, Zoe and I to really talk about all the things we remembered about Sarah. Her likes, dislikes, habits etc... (Ingrid was in bed when we did this). By the time we were finished, all of us felt really in touch with Sarah. And I’m sure she loved it! Theresa wants to read the cut outs as a family every Christmas.
When we were finished, I remembered that Sarah was a prolific journal writer. I told Theresa that in a few years she could start reading some of mommy’s old journals, and learn even more about how wonderful she was. Warts and all! Miss T. thought that would be great. Well my dear, your legacy will continue to flourish, in your own flesh and blood, and in the hearts of all of us who care.
Peace,
Chris
Saturday, January 8, 2005 6:41 PM CST
Hi everyone,
I hope you are all doing well. Life continues to be very active around here. The past 6 or 7 days have been filled with gray skies and rain. It reminds me of Seattle in the winter. The difference is that after work, I could drive for 20 minutes or so from home and be cross country skiing in the mountains. Around here...... I need a boat!..... HA!
Yesterday was another milestone day. And it brought a tear to my eye. Ingrid graduated to the booster seat in the car. My is she growing! She just turned 3 and is 44 pounds and 41 inches! All the girls eat a lot too. Nature will not be denied.
Thank you Kathy M. for your help the other night. The girls loved the gifts and are giving them a good workout. It feels good for me to get out and meet with some buddies at our club. A little time away helps bring some perspective.
I met with my grieving parents group today and we all had similar responses to the holidays. It was hard on all of us. We talked about how our stress level and irritability level have been pretty high lately. An additional stress factor for me is that Sarah’s first anniversary in heaven is only a couple of weeks away. Last year on this day, I was on a well needed private retreat. I remember that it was not really relaxing, I was worried sick about my wife! It seems that our bodies remember things even when our conscience does not.
Theresa and I went to the cemetery before meeting with the hospice group and spent a little time with Sarah. We said an Our Father to close out the visit, and when we looked up, there was Deacon Pat from our church. It seems that he makes the rounds once or so per month to pray for all those he knows at Calvary. He was glad to know where Sarah is and will now put her on his list. Pat is a good man.
Thank you everyone for your support this holiday season. We will continue to pray for you too.
Peace
Chris
Sunday, January 2, 2005 7:40 PM CST
Happy ‘ought-5 everyone.
A new year and a new start. I must say, last year had quite a few things in it that we would rather not repeat! At the same time, I am reminded of the unbelievable generosity, love and help so many of you have given to us. ..... “It was the best of times, it was the worst of times.”
The next big emotional hurdle is of course in a few weeks. In some ways I can’t believe that she has been dead for nearly a year already. Eventually, the perspective of time helps things seem more clear. It still feels like my family is in uncharted waters. Kind people have asked me numerous times how are you and the kids doing. I generally say that we are doing “fine”. The truth of the matter is that I don’t really know what “fine” means in our situation. It is pretty hard to talk in a way that you wonderful people (who have not lost a parenting spouse) can relate. One day your wife has unusual abdominal cramps, the next she has major surgery and is diagnosed with stage 3+ colon cancer. A year and a half later, dead. Ya know, that wasn’t really in our plans.
So here we are. Life has laid out new paths for us. Ones that we certainly did not want, nor expect. Even so, choices about how to live are being made. Do we grow closer, stronger and wiser through this ordeal, or do we choose to fall apart? One thing Sarah knew for sure about me was that I had very deep inner strength. Falling apart or cracking up in the face of this adversity didn’t even enter my mind. Of course we are going to thrive! My mother in law Sue came over the other day and I said to her, “I’m quite and exceptional man!” She laughed and said something to the effect, it is not boasting if you know it is true.
I remember thinking soon after Sarah’s death, OK God, what on earth are you trying to teach us now?! And over this past year, our family has been learning a lot! So life moves on at our house. And little by little, the path through these new waters is being charted.
Thank you all so very much! We love you. And may your ought-5 be filled with wise choices, prayer and love.
Peace
Chris
Wednesday, December 29, 2004 7:46 PM CST
Hi everybody.
I hope you all had a good Christmas. It went well here. The girls were rather wired on Christmas eve. When I finally got them to bed the woke up at 3, 4 and again at 5 am. I finally allowed them to get up and come into my room at 6 am. Bleary eyed and yawning, I slowly lead the crew down the hall toward the lighted tree. Ingy was behind me holding onto my pants; then came Zoe holding Ingy’s shoulders; and finally Theresa at the back, holding Zoe’s shoulders. All of them had their eyes closed. I made a few wisecrack comments about how Santa forgot our address and skipped our house. They were not amused. When we finally reached the tree, I told them to open their eyes and see what arrived. Giddy laughter, shredding paper and Mannheim Steamroller was all I heard for 20 minutes! What a great time. Thanks Dad for the tree walk tradition.
The girls and I put up all the stockings above the fireplace, including Sarah’s. It would just not seem right to leave hers out. But when it came time to put gifts into the stockings, I was at a loss as to what to give Sarah. Then it hit me, I will write her a heartfelt letter and put it into the stocking. So that’s what I did. Each year, I will write a new one and put it in her stocking. Speaking of my dear, on Christmas day I was really thinking about her a lot . After Mass, We came home and I turned on the tv and low and behold a large beautiful choir was singing Magnum Mysterium, Sarah’s favorite song! I had not heard it since her funeral and I just melted. It was so beautiful, and tears streamed out of me for a good 10 minutes afterward. Sarah gave that gift to me!! Yes, her presence is still very near.
Theresa got a complicated Ferris wheel erector set type thing from Grandma Hughes for Christmas. And she was chomping at the bit to build it. The complexity was similar to the playmobile castle she got last Christmas. later on in the day, I allowed her to start building it. She spent the rest of that day and most of the next putting it together. I offered minimal assistance and she did the rest! That girl has a passion for building! She felt so good when it was finished. I took pictures. Theresa said to me that she loves engineering. (It is wonderful to see talents begin to emerge.)
Thank you everyone for your love and generosity. I am continually floored by how much all of you care for us. We are deeply humbled and blessed by your actions.
Peace to all, and have a safe new year.
Chris
Friday, December 24, 2004 7:40 PM CST
Merry Christmas everyone!
T’was the night before Christmas and all through the house, not a creature was stirring not even..... Ingrid. Well, this is it. Our first Christmas without Sarah. It certainly feels different. The girls have been winding up all day and this evening they were plenty excited. In many ways the environment outside has been perfect. And the preparations inside have gone well too. We started a new tradition this year of setting up the tree and stuff on Ingrid’s birthday, Dec. 21. That way she feels a special connection not only to her birth, but Jesus’.
The girls have really enjoyed playing out in the snow. They come in about an hour after they went out, shivering and soaked to the bone, but grinning from ear to ear. I load them up with hot chocolate and they are happy as clams. God and Sarah, I am so grateful that you brought these three angels into our family. I know Sarah is smiling from ear to ear. And I feel pretty good too. It’s a lot of work for me during this time of year. And keeping focus on the real celebration of Christmas has helped me cope and all of us grow.
I pray that all of you wonderful people out there in cyberland feel the spirit of Christ fill you up and bring a warm sense of peace to your heart. And have a merry Christmas!
Peace.
Chris
Tuesday, December 21, 2004 2:47 PM CST
Hello everybody.
Winter solstice day, that mean Ingy’s birthday! I got her a pretty blue and white sparkly dress and some much needed socks. She was really pleased with them and proceeded to drag them all around the house. Tonight we will head over to Sue and Ralph’s house to have birthday cake and company. (I managed to get the dress and socks out of her hands and into the closet for use this evening.) Ingrid’s Godmother and other friends are supposed to come so it should be good time.
Our holiday bash in Muncie went over pretty well. All ten of us kids and our families made it! My mother and sisters manage to run the show quite effectively. Like usual there was way too much good food and enough presents to bury the christmas tree. The best present was probably the one my youngest sister and her husband gave to my folks. She is going to have a baby! And they seem to think that this will be the last one for them. The age spread of grand kids in my family is amazing. About 27 years! My mom says there are 29 grand kids now. I trust her since I gave up counting years ago..... Be fruitful and multiply.....
We also have started a new tradition in our family. Theresa, Zoe, Ingrid and me set up Christmas decorations, including the tree on Ingy’s birthday. That way the day is not only special for her, but important to all of us. And boy did they sure go at it! It really warms my heart to see them so excited. After we were finished, I took all three girls in my arms and told them that there is an awful lot of love in this family. Then I proceeded to give them a hug, kiss and a tickle per Sarah. In a flash we were on the floor rolling around and having a good time.
Thank you everyone so very much for your gifts. Especially Bill and Debbie, Cece and Roy, Sue and Ralph and, of course, my family. We love you all.
Thank you my dear for your incredible gift of Ingrid.
Peace,
Chris
Friday, December 17, 2004 8:22 PM CST
Hi everyone
Today has been a rough one for me. I have felt uninspired and sad at times. It’s almost like Sarah just died. I decided long ago to follow Sarah’s method of just saying what was going on and how I (we) felt about things. It would be much easier to just sugar coat everything and say that I am doing OK. The bottom line is that it is VERY painful to loose your spouse. A group of us single-by-death parents met last Saturday with councilors at the Hospice office, and all of us seemed to be struggling this time of year. Theresa and Zoe met with other kids who lost a parent. It is really a good way to figure out where one is in the grief process. There is a remarkably wide range of “normal grief.”
Silly things are reminding me of Sarah right now. For instance, I opened up the oven this afternoon and it struck me that I will never smell or taste the fabulous food she cooked up anymore. The girls and I feel her presence around here pretty strongly at times, but I still miss her body. Perhaps it is time to head back over to the cemetery and have a talk.
Tomorrow we head up to Muncie, In. for our annual Christmas get together with as many families as can make it. It’s a pretty good time and the girls love playing with the cousins. For me it will certainly feel bittersweet. But as I know from experience. These feelings of loss and pain are just that. And they will pass in due course. (as long as I let them) The greatest conciliation is that eventually, we will be together again in heaven. And that aint all bad!
Thank you everyone so much for all that you have done for us. The girls and I pray for all of you each and every night. You have brought the spirit of Christmas to us all year long.
Peace.
Chris
ps I am feeling a little better already:)
Tuesday, December 14, 2004 5:22 PM CST
Good evening everyone.
Tomorrow the blitz starts! Miss T. turns 8; we will have our K family big bash in Muncie on the 18th; Ingy turns 3 on the 21st.; then Christmas. Zoe will turn 6 on Feb. 3rd. We have been talking about the past year and how much of a challenge for all of us it has been. We are really feeling pretty joyful through all this, and your prayers are a big part of it! Thank all of you so much. We just do not feel empty.
Yesterday morning I told the girls to look outside and tell me what they saw. All three screamed at the same time SNOW FLURRIES!!! Unbridled joy. They are sooo ready for some deep snow. Theresa got an extra gift this evening, her best friend Cassandra will be coming to her birthday party at grandma Hughes’ house. A good time should be had by all. tonight I will wrap up Theresa’s gift.
There is much more I will write about a little later.
Peace everyone, and have a good week
Chris
Thursday, December 9, 2004 7:56 PM CST
Good evening all.
Today marks the ninth anniversary of us living in this home. It was an exciting time for Sarah and I. I remember we sat down and wrote out a list of changes we would like to do during the first few years. Well, I found that list the other day. And almost all the items are marked off! A new driveway is the last big ticket item. Some days I really, really miss Sarah. We laughed a lot.
A few days ago, Miss T. was practicing “Oh Christmas Tree” at the piano. She played it pretty well and I caught myself grinning from ear to ear. I thought It would be years and years, before the sound of beautiful music would fill this home again. I told that to Theresa and she got up and gave me a big hug. (Thank you oh great “Doctor D.” for your musical teaching talents!)
The girls have discovered the game Yatzee this past week. With just a little coaching and instruction they really went at it. What a great way to learn math and strategy! Zoe won the first game and that helped keep her interest. Theresa did the final computations and asked me to check the results. It is great to see natural learning!
Ingrid has been remembering Sarah in interesting ways lately. First I noticed that the house was unnaturally quiet. So I called for Ingrid. (Quiet usually means the worst.) She did not answer, so I swept the house. I found her in my bedroom curled up under the blankets on Sarah’s side of the bed. When I asked her what she was doing she said, “I’m sleeping with mommy.” As I lifted up the covers, I noticed that she had several Sarah and Sarah-with-Ingy pictures held to her chest. I just stopped and laid down with her for a moment. A day or so later, she found Sarah’s childhood teddy bear and did not want to part with it. She gave it a new name, mommy. Now Ingy wants to sleep with it all the time, and is very careful with it.
Ah yes, life continues to evolve around our house. Each day is a new adventure.
Peace everyone.
Chris
Saturday, December 4, 2004 6:43 PM CST
Hello all.
It has been a pretty good day around the K household. The weather was beautiful around here in the Ohio Valley, and the girls were able to enjoy the outdoors. Saturday is our official laundry day. And slowly but surely the girls are getting the hang of collecting up all their dirty clothes and bringing them into the basement to be washed. Miss T. has taken it upon her self to be the “laundry queen”. Once the clothes are sorted out. She almost takes over from there. Adding soap, detergent and bleach if necessary with a minimum of help. She is still a little afraid of the high speed spin cycle. (This super duper washer spins at 1200 rpm!) Occasionally, the load will be slightly off balance and thump when spinning. And that scares her. But she is determined and I like that.
Zoebo is continuing to impress me with her reading. She reads to me at night now, instead of me reading to her. I knew that eventually she would catch on. It is great to see her begin to bloom. Bob books are popular right now. The Zoey-woey-ohh Sarah loved to hug, kiss and tickle is growing up! And you know what, Sarah is smiling from ear to ear.
Ingy is as precocious as ever. She is also very determined and smart. It’s like you can just look into her eyes and see a person who is really going to make a mark on this world! My aim is to funnel that into capacity to a positive outcome in life. She, just as Zoe has the greatest sounding laugh.
I had the chance last night to get out to my December meeting of the Louisville Astronomical Society. It was our Christmas meeting at Kingfish on upper river road. What a great time. Several who sat at my table were new to the club (like me). However the club started in 1933! Seventy one years ago! We had a nice dinner and were entertained by the club president impersonating santa. (complete with songs from his elves) and a very nice slide show of the year in review. It was good to mingle with adults.
So life is moving well around here. A bit of emotional roller coaster at times but I expect that. Thank you all so very much for your prayers and help during this special time of year.
Peace.
Chris
Monday, November 29, 2004 7:18 PM CST
Hi everyone:
I hope you all had a good Thanksgiving weekend. I took the girls up to Aunt Joanies last weekend to eat and visit with family and friends. We had a good time. And the food was great too!
Two milestones have happened this weekend! The first was that Ingrid has completed 8 days without wetting or soiling her diaper, so she has officially stopped wearing them! Even at night! yee haw! The past three days, she has come to get me when she has to go potty. She is a little like Theresa. The girl has a camel bladder.
The next thing is that Zoe has started reading nighttime stories to me. Sarah and I had been reading to her since she was around 2 and now she is finally feeling confident enough to sound out the words. Miss T. was reading quite early so we were kinda spoiled, and expected Zoe to follow suit. It is truly wonderful to see Zoeboe’s eyes light up when she gets it! Sarah is really smiling.
Speaking of Sarah, during the past few days, I have really felt the heaviness of loss. It came over me at the Thanksgiving Mass celebration at the Cathedral Thursday morning. I remember the conversation we had about being thankful. Sarah was so thankful for being alive in each day. She would often say to me, “ It sure beats the alternative.” When you live with someone who has a life threatening disease, each day does have a special importance and value that was just not there before. They help us understand the importance of life. Yet again, my dear you were teaching us.
Last night, the weight felt very heavy. I began worrying about the future, obligations, and life in general. Nothing I tried to do seemed to help lift the weight. Until I had a big cry. I spent half an hour crying, praying and letting go. I told Sarah that I really didn’t want her to go. During the latter part of this event I realized that these feelings were just another part of the healing process and that they won’t hurt me. It did take a lot of energy out of me as I was shivering and cold. A neat thing happened after I settled back down. I prayed to God for Sarah to always be very near us and to help me. within a second of saying that out loud, the furnace kicked on and I began to get warm.... Thank you my dear.
Peace everyone. And thank you all so very much.
Chris
Wednesday, November 24, 2004 7:38 PM CST
Hello all you wonderful people.
Thanksgiving is fast approaching, so I thought that I would write a few things that I have been and continue to be thankful for.
THE GIRLS I never anticipated ten years ago that I would be in this kind of parenting situation. Despite the very real challenges and struggles day to day, Theresa, Zoe and Ingrid are incredibly special to me. In so many ways I am a very fortunate father. I get to see them grow up, change and learn right before my eyes every day. Each one fills a different niche in my heart and they certainly keep Sarah’s presence alive through their actions.
YOU! All of you, friends, family and strangers have done no-less than keep this family functioning normally! I have never felt so much love and true concern coming from so many wonderful people. You have been one of the greatest gifts this family could ever hope to have. Thank you from the bottom of my heart.
WISDOM AND PATIENCE God has a wonderful way of guiding those who seek his help. I remember many years ago praying a lot for both wisdom and patience in life. I did not expect to have a toddler in my 40’s, but during all those formation years, God was molding me for this job at this time. Guess what. I am using ALL my patience and wisdom now! :)
NEW BEGINNINGS Sarah’s death has had a profound affect on all of us. While we feel her loss in different ways, at different times and in different intensities, we (the girls and I) just do not feel empty. To me, death has become much less scary. I have learned so much about it and have felt the holy spirit’s presence around me so often, and in so many ways that I have renewed strength and purpose. Each day is something new.
Peace everyone, have a great and safe thanksgiving.
Chris
Thursday, November 18, 2004 6:39 PM CST
Hi everybody
Thank you Cici and Sue and Ralph. Your help today has been truly wonderful! The girls always enjoy your company. (And I get a myriad of things done.) Theresa and Zoe really love the turkeys.
Last week I took the girls for a visit to the cemetery. Sarah’s stone is in place and it drew them like a magnet. For the next 15 to 20 minutes or so the girls were scouring the creek bed and hill side looking for flowers and other pretty things to put on mommy’s stone. It was really very touching. We all held hands and said an Our Father before we left. The whole ride home the girls were asking for all kinds of things to put on her stone permanently. Sue also mentioned to me that the new stone “really brings it home”.
Zoe told me this evening of a dream she had about visiting heaven with Theresa. She said that she saw Sarah and I as angels dancing together. We were very happy.
Thank you everyone. We are a very, very blessed family to have all of you.
Peace.
Chris
Saturday, November 13, 2004 12:03 AM CST
Greetings all.
Caringbridge has been slow at allowing me to update.
Thank you veterans for your service. We simply would not be here without you.
Life keeps going and changing around here. The simple fact of the matter is that raising children is hard work. It doesn’t matter if you have a few or a lot of kids; dual parents or widowed. Being there for your children, making the meals, doing the laundry, cleaning, shopping, etc... has to be done. There are tremendous responsibilities on our shoulders. And If you think about it, the capacity to deal with and succeed in the “real world” was the goal of our parents. They, as well as we want our children to be better off and have a better life than we had.
So then I ask myself how can I make life a little better for our 3 beautiful girls? THAT is a loaded question for sure! For me it starts by being thankful to God for what I have. Being thankful, I think, automatically puts one in the mental category of gift receiver. Everyone is happy when they receive that special present! It also makes us much more aware of those who have less. By helping the girls realize how gifted they truly are, they are developing a healthy respect for life around them and within them. Even when we get the unexpected (like Sarah’s death). Pain and sorrow are gifts too. Not ones that we usually think of, but very important for growth none-the-less.
It is also important for me to follow my natural inclinations. So many people are afraid of or discouraged from following their natural calls. I think when we don’t recognize, avoid or resist our natural callings we create an environment of stress and unhappiness in our homes. That in turn becomes the model for our children to emulate. The girls sometimes think I am cooky for getting excited about building a piece of furniture or seeing a neat space object through my telescope. But what they really see and understand is that I am ENJOYING myself. And that is the model I want them to follow. Sarah had a great tag line on her e-mails that read something like; the biggest mistake people make in life is not trying to make a living at what they most enjoy.
Despite all the pain and chemo, Sarah had this freedom of spirit within her that was not defeated by death. She enjoyed the gifts life offered even more. And the girls recognized that. When you are happy with yourself, it shows. Most people don’t know this, but Sarah had a great time working at a kitchen store for peanuts just after we were married. She also won “employee of the month” for Oxmoor Mall employees.
There is more to write about, but I am getting tired, again. I promised myself that I would get to bed earlier tonight. And that shall be the case!
Peace all. We love you very much.
Chris
Friday, November 5, 2004 6:48 PM CST
Good evening all.
It’s good to be back at the computer. Life has been really busy around here lately. Every time I wanted to sit down and write, someone was tugging at my leg or screaming or I was just plain too tired. I stayed up until 5 am Wed. morning watching the election results. So that threw my sleep all off. But I recovered.
Theresa has been getting scared lately of the normal sounds of a household. Refrigerators running, furnace, etc. have caused her to feel very worried. So last night I held up close in my lap and after Z and Ingy had gone to bed and we had a little talk. I tried to draw out of her the reason or reasons why normal sounds are now scaring her. She said that the sounds might mean that something is broken. And if something is broken, it might die like mommy. And that would be really sad. I knew the two were tied together some how. We talked about it, shed some tears and gave each other hugs.
Theresa’s fears also remind me of the fear of a house fire that Zoe had for a couple of months. Grief comes out in different ways. And now we are coming into the holiday / birthday season. It will be difficult for us I think. Perhaps we will create some kind of gift thing for Sarah. I’m open to suggestions.
Sue’s surgery went well earlier in the week. The operation was to remove a herniated disk between C6 and C7. They used a bone graft to fuse the two together and attached a metal rod or cage to help stabilize the area. She has no pain in the neck anymore! Now she is on the road to recovery. So say an extra prayer for her tonight. She and Ralph are very special people.
I want to thank Christy and her family, Cici and Keely, the Bodes, Carringtyn, Kathy and everyone else for your wonderful gifts to us. The gift of yourselves has been a major factor in the joy our family has been experiencing. We are very, very grateful!
One final thing tonight. Sarah’s grave marker is in place at the Calvary Cemetery. Last Sunday at church I was looking at the large stained glass window at the east end of the cathedral. I noticed that the angel on the lower left side (by Mary) was virtually identical to the angel carved on the grave marker! I knew at that moment that Sarah had a hand in it...
Thank you everyone.
peace.
Chris
Sunday, October 31, 2004 6:26 PM CST
Happy halloween everyone.
We had a good time this evening. Grandma came with me and the girls and Grampa Pal stayed at our home to feed the ghouls. Ingrid dressed in the halloween clown outfit that Sarah had made for Theresa years ago. Zoe was the cowgirl and Theresa dressed like a gypsy. Miss T. was going to go as the floor of the movie theater but I told her that was too gross.
The combined sweet tonnage collected tonight equaled 7 1/2 pounds. And that was only on a couple of streets. We all had a great time. I know Sarah enjoyed it. The next trick will be to slowly dispense of the candy horde over time. What nice memories.
Thank you everyone for your love and prayers. I wanted to write some more, but I am a little tired tonight! Please keep Grandma Sue in your prayers. She is going in for neck surgery tomorrow to correct a long standing neck pain condition. We are all hopeful and pray for her speedy recovery and complete healing.
Peace
Chris
Tuesday, October 26, 2004 7:03 PM CDT
Hello all,
Sorry I have not updated sooner, we have been out of town and Caringbridge has not let me update! Last weekend, I took the girls up north with me to a drop off point for my sister Joanie. She graciously agreed to take them for the weekend while I had a weekend with my brothers and dad. Once a year all 6 of us boys plus dad and brothers-in-law try to get together for a “fishing trip”. This year it was in Muncie. Fishing was not on the menu, but heavy rain and a surprise 50th birthday party for my oldest brother Bob was. It was a good time. Thanks all! Oh, by the way Bob, did you know that 50 years old is HALF A CENTURY!! Just wanted to let you know.
The girls had a great time (as usual) at Aunt Joanie’s house. My sister loves them very much and it really shows. Thanks sis. The girls are also excited with their new tap and ballet lessons. Finally, after years of waiting, a person opened up a dance studio just up the street in the old revamped strip mall. Sarah and I had wanted someone to do just that for a long time. Theresa enjoys it, but Zoe really gets excited. Now our “miss kenetica” has another great outlet for all her energy.
About a week ago I got a letter in the mail informing me that Sarah’s grave marker was installed at the Calvary Cemetery. I went over there and looked at it. It is a simple slanted marker with her name, dates, an angel, and two rows of engraved sayings. The first one at the top says “world’s greatest mommy” (the girls’ first choice). And at the bottom, “Beloved wife” for me. (To be truthful, I wanted a 30 foot high massive granite work of art, with a solid gold cross on top and engraving that said something like; the body of the 2nd most fantastic woman, wife and mother ever known to humanity is here. The world is a much better place because of what she has given to so many in so short a time.... I could go on and on, but I think you get the idea.)
As I stood their for several minutes looking at her grave, I could see her resting at peace in her pretty cherry coffin. Then I could see me holding her hand. A moment or two later, I/we started saying the Our Father. Sarah and I did that nearly every night while sitting in bed holding hands. After I drove away, I thought to myself how appropriate it was to say that prayer. Sometimes the simplest things have the most profound meanings.
Peace everyone.
Take good care of yourselves and thank you for your prayers.
Chris
Monday, October 18, 2004 8:11 PM CDT
Hello everyone.
Life continues at a brisk pace around here. Ralph was commenting this evening on how fast the girls are growing up. A woman I met at the Meijer’s check out line was smiling at how interactive and “cute” the girls were acting. Then she said before long you will turn around and they will be 30! Then I asked her if I could have that happen today! She smiled and laughed once more.
It’s true though. They really are growing up so fast. And I just see in my minds eye Sarah smiling from ear to ear. It is tough some days, but always worthwhile. I love these girls. Sarah just had this internally deep confidence in my parenting ability from all the way back to when Theresa was an infant. That confidence, I think, helped give her the freedom to listen and believe her own heart about the “right” things to do as a parent. One thing that Sarah picked up on right away and dealt with beautifully was each girl’s uniqueness. That capacity manifested itself is many ways. Each evening before we went to bed, we would go into the girl’s rooms and pray over them. Sarah had a special way of communicating to each girl in just the right way. I remember her climbing up the bunk bed ladder to kiss and pray over Theresa. She often would lay down with Zoebo at her bedtime for 15 to 20 minutes gently touching her hair and singing “Dreamland”. Ingy got special treatment too. Sarah would wrap her up like a burrito in “little blee”,hold her up close, rock for a few minutes and hum on her head. Sarah did these things even on the last night of her life.
I have been given a lot of inspiration!
I had planned to write more this evening, but I am tired... Imagine that! Take care everyone. I still feel your prayers each and every day. They really are sustaining for us!
Peace.
Chris
Wednesday, October 13, 2004 6:21 PM CDT
Hi everybody.
Sorry I haven’t updated sooner. AOL has held my computer hostage for a few days.
Our trip to Camp Evergreen was, well..... interesting. Most of us think of a family camp as a fun-in-the-sun kind of place. This camp had a very different purpose. The whole experience was designed to help families grieve the loss of a family member and to know that there is help available. When we arrived on Friday afternoon, I could tell immediately that there were families in all stages of the grieving process. We would break out into kids, teens and adults groups to work on issues, and then gather back together for family work. In-between all this was fun stuff and meals. One family was an absolute wreck, while another was so quiet, I almost didn’t even notice them. The staff was very helpful and great. Kudos to the Hospice team! The girls had a good time. Some things were scary to Zoe, (like walking blindfolded while listening to another’s directions) but most of all they liked the kids.
As you could imagine, some of the kids were poorly controlled or out of control most of the weekend.
One thing that all the families did that I especially liked was to create a room called the healing space. In here each family placed an Item or photo of their loved one on a table “altar” along with a perpetually burning candle. Then during the weekend, we could come to that room at any time sit in silence, reflect and pray. Theresa enjoyed it too.
I came away from the weekend with the knowledge that our family has come a long way down the road to healing. While each day continues to present it’s own challenges, the deep pain of Sarah’s death is just not consuming. And after this weekend, I understand more fully why. And that is because she in not gone. Sarah and I shared a complete and incredibly rich life together. Our faith (the girls too) only grew stronger through the cancer ordeal not weaker. Then when she died her cancer did too, and her spirit was set free. We all miss her body that’s for sure. But Sarah is still kicking around in our hearts, minds and feelings. And not once since she died have I thought of her as sad. It is always in joy. We have a great God!
Thank you everyone for the prayers and birthday wishes. Theresa said to me the other day that I don’t look very old for being old. Gee, I love you too.
Peace all
Chris
Friday, October 8, 2004 1:55 PM CDT
Hello everyone.
This Afternoon Theresa, Zoe and I leave for Camp Evergreen. There are eleven families total at the camp. It should be enlightening and healing for all of us. We had an orientation meeting on Wednesday this past week at Hospice’s Bridges Center. It went pretty well. The girls and I got to meet many of the other folks. So, say some prayers for us and I will fill everyone in on what went on after I get back. Ingy gets to stay with G&G Hughes this weekend.
Peace,
Chris
Wednesday, October 6, 2004 8:27 PM CDT
Greetings everyone.
Boy the deck is sure nice! Especially with the weather we have been having lately. The girls have been constantly jumping off of it, running around it, and playing all kinds of games on it. Building it was a good move on my part.
Last night just before bedtime, Zoebo was running around and jumping up and down like a frog in the living room. I said to her settle down. Her reply to me (as she ran down the hall at full tilt) was pure Zoe. She said, “ I’m too jumpy daddy!” Yeah, tell me about it! She is our kinetic fireball. Grandma took Zoe to get her new eyeglass prescription filled. Kentucky has a law that new kindergartners must have their eyes checked by an optometrist. I took Zoe last week and the doctor found that while she has very good vision clarity, her left eye wants to turn in a little more than normal when focusing up close. This could develop into a problem later on so she prescribed a special grind for a pair of glasses. Zoebo was thrilled to get eyeglasses! Now if we can keep them from getting lost!
Earlier in the week, the girls received a wonderful care package from Uncle Rex and Aunt Linda. They each got a matching outfit and halloween toy. What great fun. The halloween ornament was also neat. But what I liked best, was Uncle Rex’s letter and drawings. For those of you who don’t know. Rex is a very good cartoon / caricature drawer. It is always a treat to see his artwork. I especially liked his drawing of my face. Everything looked normal, however my eyes were big and glazed over! He understands! Thank you both so much.
Peace everyone. Thank you again so much for your prayers. In a couple of days, Theresa, Zoe and I will be going to the grief camp out for three days at camp Evergreen (sponsored by Hospice). It should be a wonderful time for us to share with others who are in the same boat. Ingy will stay with Grandma Hughes.
Chris
Saturday, October 2, 2004 6:00 PM CDT
Happy October everyone.
My birthday was yesterday, 42! Sue and Ralph and the Hoyles (good friends) had a dinner in my honor at Sue and Ralph’s house. It was nice. Thank you so very much! I was serenaded by my brother and sister-in-law, then later, my folks over the phone. They were quite willing to remind me that I am old. I love you too!
I forgot to mention the other day that I had been building a deck outside the back sliding glass door. It is now finished and the girls love it! I think it will get plenty of use too. A special thanks to Christie and her kids for coming over and having a picnic lunch with us on the deck. You guys are great.
Yesterday morning, I began thinking of the things that have gone on this past year in my life. No doubt it has been one of MONUMENTAL change!! The highest high, and the lowest low all sandwiched in one year. But something else has occurred. Incredible doors of opportunity and growth have opened for me and the girls. Profound grief and life struggles force one to expand. And knowing that we are making it through, has given us the capability to become stronger. I feel stronger and more capable. God is very good!
Well, thanks everyone for the prayers. Always know that you are deep in our hearts. Sarah sends her thanks too.
Chris
Thursday, September 30, 2004 7:37 PM CDT
Good evening all
I realized that I had not updated in a while so here it goes.
Earlier in the week I was feeling down, missing Sarah a lot. Then it dawned on me why. I was mourning the loss associated with our wonderful trip to Seattle. The girls sensed that I was feeling down so what did they do? Those wonderful, little angels?...... They whined and cried and fought amongst themselves more than usual. How special. All three girls also got the end-of-the-season snuffles. So nights were rather interrupted with coughing fits and sore throats. I mentioned to my mother in law that some days I just want to punt!
I was mentioning to Sue about hurricane Jeanne passing very close to my Aunt and cousins. Just then I checked the mail and found a letter from My aunt Jean (who lives in the strike zone!) It was a great letter. Thanks aunt Jean, that letter lifted my spirits. It also brought back good memories of Mike too!
So, that’s been life at the K’s house this week. Thank you all for your prayers. It seems like when I am down, I feel their power most. It is very good to know that so many people care for our little family. Bless you all.
Chris
Friday, September 24, 2004 7:07 PM CDT
Good evening everyone. I hope all is going well with you.
One year ago tomorrow, Sarah and I went on the best vacation/honeymoon ever. (Sponsored by our wonderful family!) It is just startling to know that she is not here now. Sarah had a great note she wrote last year about this period of time. She wrote;
“We (chris and I) were talking while away last weekend and both realized how very satisfied and happy we are with our lives together. With all honesty and including the cancer, it truly is the best time of our lives. I can think of nothing more fulfilling and joyful than having a life mate who you can trust and talk with, who truly respects you and your opinions and who is the joy of your life. Our experience of this past year is one of those major life experiences that can either draw a couple apart or pull them together. We were pretty close before but now we are much closer. Instead of talking about doing things, we try to do them. Instead of thinking of saying something to one another, we do it. You get the idea. I think for me what seals the deal is the way he steps right in and keeps our family life going even when I feel rotten..... Yes, it is a great and happy time.” Sept. 19, 2003.
When I read that the other night, I just broke down in tears. There were some posts that Sarah never told me about, and this was one of them. She was right though. It was a very happy time. Life was simple, intense, and clear of the little things that just didn’t matter. We felt comfortable and at peace just being. In a way that is hard to put into words, I still feel that presence. It is great to know. If that deep peace was not part of me, I’m sure that I would have gone nuts by now!
Miss T., Zoebo, Ingrid and I went to Meijers the other day for shoes. The two big girls feet are outstripping our supply. We first went to the bank where I had Theresa and Zoe make out withdrawal slips and deal directly with the bank teller for their money. Then we shopped at the Meijers shoe area. I helped Zoe, and Theresa selected her own. When we got to the checkout line, I had Theresa do all the transactions. It was great to teach. She was very proud of her self. For the rest of the week, Theresa talked about and wore her new “stylish” shoes.
I contacted the monument company yesterday, and they said by mid October Sarah will have her grave marker in place. Yay! The granite is coming from Vermont, and the carving will be done here. It will be so nice to have something to focus on when we visit the cemetery.
A final note. Happy birthday dad!
Peace to all tonight.
Chris
Monday, September 20, 2004 6:44 PM CDT
Hi everyone.
The trip to my brother’s house over the weekend was extra special for me because the sky was very clear and I brought my telescope! Thom and I, then later Alex, looked at the eternal wonders for almost 4 and 1/2 hours. Simple things in life please me, I got to see the milky way naked eye for the first time in years. The views of nebulae, clusters of stars and galaxies were spectacular. In fact, last Saturday night was the most enjoyable outing I have had in 25 years of telescope viewing! And that’s saying something!....... OK, so I am a nerd! Big deal.
Ingrid has been cute the past few days. She and “Beulah” have been going to the imaginary train station to ride the train. “Buelah” was the name of her maternal great grandmother. She just picked it up as a name for her imaginary friend. Now she and Buelah do several things together. My oh my she is growing up. Sarah is smiling away in heaven.... Now if I can only keep Ingy from playing with barbies in the toilet...
My body has been doing well lately. I am controlling my diabetes by eating whole grains, veggies, meat and fish that have a low glycemic index number and exercise. I am fond of my term “cave man diet”. Because that is basically what it is. It works best when I eat my biggest meal at lunch, and my smallest at dinner. That is kind of opposite of the norm, but if you think of the activity level throughout the day, it makes sense. Most of us are much more sedentary in the evening. There is some fascinating research out there on eating low GI foods. Including studies which show considerable weight reduction and improved health. I like it because stuff tastes good!
Thank you everybody for your prayers and comments. It is coming up on a year ago that Sarah and I went on the best vacation ever to Seattle. And I am missing her a lot. Especially in the evenings.
Peace to you all.
Chris
Saturday, September 18, 2004 8:46 PM CDT
Good evening all.
This will be a shorty. The girls and I just got back from a Friday and Saturday stay at uncle Thom and aunt Patsy’s house. It was great. Thank you so much bro and sister in law for your hospitality and fantastic weather. Also thanks go out to Alex and Amy. We all really enjoyed ourselves. (The girls were awake and excited all the way back until downtown Louisville, then they crashed!)
Peace and love to all.
Chris
Sunday, September 12, 2004 7:59 PM CDT
Hi everyone.
It has been busy around here lately. Life with three girls is never boring. Theresa got a book from a friend on sign language. Now she has it almost memorized! In fact, she teaches Ingrid the hand signals after breakfast. It is cute to watch. Miss T. is also trying to write more advanced forms of poetry. She has been working more on her cursive lettering and it is becoming very nice. She will write a dozen or so letters of the same kind and then ask me to “grade” them and pick out the very best one. Then she takes the best one and copies it. I’ve got a whiz on my hands!
We went to the library on Thursday this past week as part of our usual outing. Zoe and Ingrid went to the computers and started playing “Blues Clues”. Theresa, on the other hand was dead set on getting herself a library card. I explained to her in detail that she had to be able to look up a book on the computer card catalogue, write down the codes, and find it on the shelf all by her self before I would grant her permission to get a card. After just a little coaching, she found the book she wanted and the codes. We needed a little help from the librarian because we had no clue as to what section the codes pointed to. But alas, Miss T. would not be deterred. She found the stack, looked through the right titles and found her book! She now is the proud owner of a new library card. (And she showed it to everyone for the next 3 days!)
A day or so later, I went over to our bank to deposit some yard sale money when my wallet disappeared from my person right in the bank! I had taken it out as well as my statement book to write out a deposit slip. I was distracted for less than half a minute, and when I reached down for it, it was gone! Several bank employees and I started scouring the place but to no avail. I had been robbed, right in the bank! There were, however 5 security cameras watching the whole thing. It is a nasty, ugly feeling to be violated by a thief. So I immediately canceled my credit card, and froze my debit cards. The next day I went to the licensee branch to get a new licensee card. That night, I prayed for the thief to feel so bad for what he had done that (he) would just give it back. I even asked Sarah for her help relaying my message to “the big man upstairs”. The next day, a small unmarked package arrived at my door. Yep, it was my wallet! Complete with all the yard sale money inside! No notes or identification as to who sent it.
I relayed the good news to my mother-in-law and she said, “Maybe you should ask for Sarah to come back.”
Other than the lost and found incident, this past weekend was really fun for me. I took my father-in-law Ralph to the Lanesville, IN festival. It was a great time. They had old steam tractors running around and one even powered a saw mill. There were old gas and diesel tractors and ancient one cylinder gasoline engines all over the place. It was a great, easy going, relaxing and free. All the old tractors sure brought back a lot of memories for Ralph too. I try my best to make the most out of doing the “guy things” in my life. They are less frequent now then they used to be.
Well, thank you everyone for you love and support. It is great to read your comments and know that we are still in your prayers.
Peace to you all.
Chris
Monday, September 6, 2004 7:52 PM CDT
Hello everyone.
No photos yet, but I will try again.
Nine years ago today (during our lunch hour), Sarah A. Hughes and I were married by a Justice of the Peace in front of the court house downtown Louisville. Tim, Ruthann and baby Sarah Bode were witnesses. Other than the Bode’s, almost no one knew that we were getting married on that date. We chose to inform everyone with a mass mailing about the blessed event after it happened. It was funny to wait 4 to 5 days before anyone phoned us with congratulations! It was not an unexpected thing by any means. However, Sarah put together some wedding announcements that looked like wedding invitations. We had great fun!
I was cleaning out the girls school-stuff desk and ran across our wedding photo album. The JP took pictures while reading our vows too. Oh what a great day. Sarah and I were both very happy, relaxed and confident in each other. At the end of the photo album, I found a beautiful photo of our Catholic wedding (a few years later) at the Cathedral of the Assumption noon mass. Fr. Marty was presiding. -- A very good man I might add. Sarah and I looked and felt even closer toward each other than we did earlier. It was truly awesome to know deep down that God put us together for a very special purpose. To this day I still feel like things are unfolding. Will I ever get married again? All I can say is that I don’t know. I do know this, I have trusted and continue to trust God implicitly, day by day. Sarah and I both did for many years. We did the leg work, and he put the chips into the right place, at the right time, every time! I have never been left empty. Sad yes! Very sad at times yes! Also very happy! But never empty or overwhelmed. I believe God teaches us throughout our life. It is up to us to listen and act accordingly.
Shifting gears a little.... I had a dream a few nights ago. Sarah and I and the girls were on an old 1600’s Spanish sailing ship at night during a rough storm. Waves were crashing, wind was whipping, the ship was rocking violently and Sarah was at the wheel. I was holding all three girls near the side of the boat when Sarah shouted to me, “you must jump and save the girls! You can’t go where I am going!” So I held all three girls tight and jumped into the raging sea. Then I watched Sarah turn the big vessel and head towards the brightly glowing whirlpool. A moment later, she was gone, and I was jerked back to reality with the knowledge that I had to paddle to safety in a raging sea with three screaming girls on my back!
Wow! how’s that for a not so subtle reminder of reality!
Well folks, today 9 years ago was a very happy day. And today, 9 years later the day is still very happy! Peace to you and I hope you found relaxation and rest this holiday weekend.
Our family loves you.
Chris
Saturday, September 4, 2004 9:25 AM CDT
Good morning everyone.
I was going to update last night but I was too tired. (Imagine that!)
Special prayers go out to my cousins and Aunt et al. in south Florida. Be safe!
My mother’s birthday was yesterday, a chipper 73 yeah mom! Miss T. called her up to wish her a happy b-day.
Oh the girls. They are really growing and changing almost daily. Ingrid has become a real fashion maven lately. In the mornings, she is very adamant about selecting her own clothes and putting them on “my own self.” She doesn’t even want anyone in the bedroom with her. When she does makes her grand appearance, frankly, I am impressed! The clothes actually match pretty well. Well.... almost... It’s hard to get over the shoes on the wrong feet! I have taken several pictures and I will try again to put them on the web site! She has taken to doing the potty thing by “my own self” too. Of course I still have to wipe her.
Zoebo has started taking an interest in math. I got a couple of simple math videos from Meijers the other day, and with in an hour or so she came downstairs and asked me to write a bunch of addition and subtraction problems on the chalk board. She got every one correct. Then she wanted an A+ (plus tickles and hugs). It is great to see her learn like that. Unfortunately, she also practiced her hair cutting technique on Ingy. I asked her why she cut it, and she said “Ingrid wanted me too!” Sometimes I still have to remember that she is only 5.
Miss T. is continuing to learn so much. Almost any time of the day is either reading, writing, playing with her sisters or asking me very thought provoking questions. Sometimes she gets quite impatient with herself or others for not getting the information fast enough. (Sounds like someone else I knew). Yesterday, Theresa asked me how do you MAKE hydrogen peroxide and what is it used for. I had to work on that one!
Oh what beautiful daughters. Thank you God and Sarah for bringing them here.
Peace to all of you.
Chris
Tuesday, August 31, 2004 8:00 PM CDT
Good evening folks.
Two years ago this morning I leaned over Sarah’s hospital bed, held her hand and said to her “you have colon cancer my dear.” To which she replied, “OK” and nodded. It was surreal, devastating, and a relief all at once. From that moment on, life took on a whole new meaning. We also started the wait-pray-and-hope-for-good-test-results mantra. Life become very simple and very focused.... What do I need to do to live. Something else I remembered vividly from that day was that Sarah’s hair was really beautiful.
In my head and heart I knew how very serious Sarah’s condition was, but we were both quite confident that she would heal completely. I guess God had a different plan. Sarah started this web site a couple of months later as a way to inform many folks of the treatments, struggles and eventual victory over cancer. She did win but God had a different plan. Sarah always loved to teach and share of herself to those who were eager to learn. ER was one of her favorite shows. (imagine that!) What I found most impressive, was her uncanny ability to correctly diagnose virtually all the cases that came through that door before the doctors did. Many folks suggested that Sarah school beyond her BSN degree to become a physician. In fact she started seriously looking down that road. But her heart was not in it. Her greatest goal and desire in life was to be a mom.
As I look back on it now, I see that Sarah got to realize her most precious dreams during our marriage. She found a tremendous, deeply committed and loving husband (if I must say so myself!) who shared similar core values; brought into this world and started to raise 3 beautiful daughters; began singing as a deep expression of her soul; and had her own very successful business. That’s what I call living a life fully alive!
So my dear, even though your body is at the Calvary cemetery, your spirit is alive and kicking in our home. Each day I try to remember that we really do live in THIS day. Your life filled with living and death filled with hope has profoundly influenced me and our family in wonderful ways. You continually teach us who are eager to learn.
We all love you my dear.
Peace
Chris
Saturday, August 28, 2004 7:22 PM CDT
Hi everyone.
Hazy hot and humid in the Ohio valley this week. People around here call it state fair weather. Sure enough, the state fair is here. Grandma and I took the girls to it on Wednesday. It is always a fun time. We stopped in to freedom hall to watch the world championship 5-gaiter horse competition. Theresa was enthralled. Especially with class 78 (riders 13 and under category). She has that amazement with horses that Sarah had. Of course we had the required cotton candy and ice cream. No elephant ears this year.
Also this week, Sue gave each girl a beautiful quilt gift that were hand made by Jane, a long time friend. They are really beautiful! And each one has a personality that fits each girl like a glove. Thank you Jane! So far each night the girls have slept all wrapped up in them.
Theresa started back with her piano lessons this week. She has graduated to a new book with a little more involved songs. It is great to see her concentrate and really learn “The Muffin Man” and “Yankee Doodle.” Now it’s only a matter of time until Zoebo asks Miss T. to teach her the new ones. That’s kind of how it works around here.
On a sad note, My brother Tim called me earlier this week to tell me that his father-in-law passed away from lung cancer. He had been ill for several months and did not respond well to treatment. It has been really tough on my sister-in-law Maureen. You can just never really prepare for the void death brings. I hate cancer! Tim, Maureen and all the affected family, our prayers go out to you, you will make it.
I took Theresa and Zoe to the Hospice sponsored Bridges Center today. It is a group of councilors who help parents and children cope with the death of someone close like a mom or dad. This has proven to be very valuable to me and the girls. It is nice to know other people are in the same boat. In October, we are going to a retreat center for a weekend. It should be good.
I had another “visit” from Sarah on Tuesday this week. I was saying the group of prayers that Sarah and I used to say before bedtime. When I finished I got up to close the window curtains and inadvertently looked at a photo of her I put on the dresser. I have seen that photo hundreds of times before but all the sudden, she was “there” staring right at me through her photo. Her eyes just locked onto mine. I felt an immediate flush and started tearing up. In a matter of a few seconds, I felt her say to me the following: I am all right, you are doing fine, and, take it easy. I responded rather matter-of-factly, thank you my dear. A few minutes later I went to bed.
Thank you again my dear...
peace all
Chris
Sunday, August 22, 2004 7:22 PM CDT
Good evening everyone.
All has been going well at the Krauskopf household lately. We just got back from a quick weekend in Indy. My wonderful baby niece, Jillian was baptized at St. Michael’s in Greenfield. My sister and brother-in-law chose me as the God father, and another niece of mine as God mother. What a great time and special ceremony. The girls did well also.
Later in the evening several of us family members got together and talked into the wee hours of the evening. My sister Joanie talked quite a bit to me about Theresa, Zoe and Ingrid, And how very impressed she was with how smart they are. My sister-in-law Patsy said the same thing. Their common theme was, what ever you are doing, keep it up! It is very nice to hear that kind of support. Sometimes when you are so closely tied to a situation, it is hard to get a perspective. They really are beautiful girls. (perhaps that’s why sometimes they require so much work!)
Theresa has been staying up a half of an hour later than usual to watch the olympics. It is fun to see her get so excited watching almost any sport. She absolutely adores the American women’s beach volleyball team. And by now, she knows the names of most of the athletes on the American teams! AHHHH unbridled joy! Zoebo is not quite as interested and Ingrid doesn’t care. Thank you Sarah for bringing these angels to our family.
Peace everyone, have a good week.
Chris
Wednesday, August 18, 2004 6:56 PM CDT
Good evening all.
A couple of days ago I got my diabetes test results back from the lab. A diabetic with good long term control of his glucose level has an A1c result between 6 and 7. An average person without diabetes has an A1c between 4 and 6. My A1c is 5.71! Yea!.... My cholesterol is 212 Boo! The cholesterol thing is easily explained. Since I got out of the hospital in late April, I have been eating eggs 5-6 days a week. Now I don’t. Egg beaters, ya gotta love em. (jeesh! I sound like gramps!)
Dr. Fakunle says this “honeymoon period” of normal pancreatic function may last for a few months or many years, no one knows. I prefer the many years thing myself. The main things to pay attention to at this stage are diet and monitoring. She said I could reduce the number of monitoring periods to about 2 a day instead of 4. Also keep the good diet thing going. I shall abide.
The other day I was rummaging through my closet and ran across Sarah’s most favorite shoes. It just stopped me cold. At one point I said to myself, Sarah, I have found your shoes! It was like she should be right there! So many instant thoughts flashed through my mind. The most common items have the strongest impact. The same thing goes with church. A large portion of our time was wrapped up in things around the Cathedral. So when I take the girls to church Sarah feels even more present. I think that is the way it is supposed to be. I like that.
Peace everyone, thank you for all the Sarah birthday sentiments. We love you all very much.
Friday, August 13, 2004 10:21 AM CDT
Happy first birthday in heaven my dear....
Well folks, today is that day. Much has poured through my mind and heart this week. It is difficult to put it into words, but easy to understand. I rearranged our room yesterday. The first time since Sarah’s death. I felt her say that the room was beginning to get “stale” and needed a new perspective. So with much mental and physical effort, I gave it a new look. During the process, I found a pad of paper (among many other Sarah items) that she had written a note on. I thought I would type it verbatim for all you to read.
Sarah’s Words:
“A year ago I was wondering. I wondered how my life would matter, who would I affect with my presence, what truly mattered? I was eager to “do something” with my life to matter. Sure, my motherhood, my marriage did speak well of our efforts, but somehow I knew there was more, more to happen more to be, more people to touch. From years ago, I always wondered if I or someone near me would have a dramatic, life changing event. I read of families with a disabled child, women or men who lost spouses, who had terminal diseases& what ever else would surely deeply change their lives.
All this time I was experiencing classic, unmistakable signs of a serious illness, cancer. Despite the clarity of symptoms, despite the low blood counts, tiredness, pain & fear, I chose to ignore them until one day they were undeniable & unimaginably serious. Then in a matter of hours, my whole focus in life changed. With my husband, Chris, at my side I had it confirmed-- You have colon cancer. You will have chemotherapy and radiation. The words were strange comfort, conformation of what I had already known. I knew then, and have not veered from it since. I am not dying & I am here to do more....
... And Mary kept all these things and pondered them in her heart.... That is what I am content to do. Ponder my motherhood, marriage, career, when I need to know it will be prescribed to me unerringly clear. This is what to do. This is the time.”
Well, my dear, you have touched many many lives all over the place. All over the world! You have done very well in sharing what you are. And your legacy continues through the three gifts from God you brought to this world and our family. Peace my dear.
One final note. This morning, my mother in law Sue called up and said to tune to the local public radio station. A flutist was playing the very piece that Sarah played to win the Indiana high school state music championship. Tears just filled my eyes for the next 15 minutes. What a wonderful gift from Sarah to give to us on her birthday. Ingrid liked it too.
Peace everyone, and thank you all for your wonderful love.
Chris
Monday, August 9, 2004 8:11 PM CDT
Hello everyone. I hope this evening finds you well.
I continue to be startled at how difficult things are for me right now. The girls feel it too. They have been extra whiney lately. Sadness that Sarah is gone is pretty strong around here, especially since her 41st birthday is (would have been) this Friday. In my planning a few months ago, I was thinking of having a gala happy birthday party at my home for Sarah. All of you were to be invited, and we were to share good times and memories. I would shower many, many thanks to all you wonderful people for your support of our family.... the only problem is that Sarah is dead, not retiring or changing jobs. It is hard to celebrate the birth and life of a wonderful woman when the stuff I am thinking about at this time is her horribly painful death, suffering from a dreadful disease, and just plain bodily absence. I’m sorry, party is off for now.
Sarah still makes her presence known quite profoundly to me at times. For instance, last Saturday I assisted Fr. Spalding during a wedding service at the Cathedral of the Assumption. I have been serving weddings for years and have heard many good and some not so good homilies for the new couples. His homily spoke directly to me even though he never met me before. He spoke of the role of spouses in a good marriage. How they support each other and walk through life in faith. And when the time comes for one of them to leave and go to heaven... (here’s the part that really hit me!)... the other spouse’s responsibility is to open the pearly gate so that the deceased spouse can walk through! I just about broke down crying completely at that point. Because that is EXACTLY what I did with Sarah. I walked with her through every step of our married lives together. And told her she could go through the gate on the morning of Jan. 22. A few moments later, I heard her say quite clearly to me “thank you”.
Sometimes I also hear her quite clearly in my mind cantoring during Sunday mass. Her spirit still surrounds us. And I see it manifested in the girls all the time. Thank you everyone for reading and keeping us in your prayers. I ask a special prayer from you for my sister-in-law’s father who is dying from cancer too.
peace
Chris
Friday, August 6, 2004 6:55 PM CDT
Hi everyone.
It has been a busy week at the Krauskopf’s home. It has also been a rather tough one emotionally for me. I miss Sarah.... a lot! The feelings kind of creep up on me and then all the sudden, I feel very sad. It’s been a little over 6 months, and her birthday is coming up on the 13th. It feels like I have stepped backwards a few months. But as with all these grief things. Just let them out and they will pass.
Earlier in the week, I took the family (including Grandma) to the CBC office to pay off Sarah’s final cancer bill and say good bye. We met the nurses, social worker Kim and Dr. Grimaldi. It was very tough! But I felt it was necessary. Closure sort of thing. I have come up with a tally of the cost (to us) for Sarah’s cancer treatment. It is about $17,800. This doesn’t include all the health insurance premiums I continue to pay or any funeral stuff. The bottom line is..... get an annual checkup, and stop smoking if smoke. Cancer really, really sucks and it is pretty damn expensive too! Through all of your incredible and I mean incredible support for us, we have been able to make it through this awful time. Both financially and emotionally. Thank you all so much from the bottom of my heart.
On some lighter notes, Theresa and Zoe have become enthralled with the game Monopoly. the have been playing it for hours lately. The rules are pretty complex so I have been easing them into it. What great fun to see them add, subtract, focus and use strategy. I also read the one year ago journal entry from Sarah for this date to the girls for their bedtime story. Tonight it was about Kentucky Down Under and all the fun T,Z, Sarah and I had there. What a great entry. The girls faces were all alight remembering how great that day was. Thank you my dear. I pray that you will be with us always.
Peace to you all.
Chris
Monday, August 2, 2004 6:49 PM CDT
Good evening everyone.
I had the first of two groups of tests today. Vision (dilation included) tests showed that I have “perfect” eyesight. No glasses and no retinal deterioration. That was good to hear! The next group includes a long term blood glucose level reading and other diabetes related tests (on Friday this week).
I guess I forgot to mention that I am totally OFF medication now! Dr. Fakunle decided to stop my evening Lantus dose completely on July 16th! Since then, my glucose levels have been normal. All that I have to do is continue to monitor 4 times a day and record the levels. It things start to change, then we will deal with them at that point. I feel great!
Two days ago, Sarah’s dream was realized. Her disability check enabled me to get a new washer and dryer for the family! I heard her saying “goody, goody, goody” in my mind. She was also jumping up and down laughing. It’s incredible how someone’s antics live on so clearly. It is really a spiffy set. The girls (especially Zoe) are now much more interested in doing laundry. That’s good! Because sooner or later, laundry will be THEIR responsibility. Ha Ha!
Thank you everyone. We love you.
Chris
Friday, July 30, 2004 6:47 PM CDT
Good evening everyone.
We are back!
If ever there was a need for a good vacation, we had it. The girls, Ralph, Sue and I thoroughly enjoyed ourselves in the mountain air. Theresa especially loved the mountain air. She and Zoe want me to build our new house there. Humming birds abounded at the bird feeders attached to the house, and provided lively entertainment. Ingy was really impressed with the steam locomotive on the Georgetown Loop Railway. She went around the house for days saying “wooooo, wooooo!!” and “ding-dong, ding-dong!” Miss T. has just informed me that she really enjoyed the free slide show at the train station. The slide show covered the history of the Georgetown Loop Railroad, and Georgetown itself.
The drives out and back were wonderfully non-eventful. Zoe and Ralph and Sue had gone ahead of Theresa, Ingrid and me by one day. (They stopped by in Kansas City to visit some old friends.) Theresa and Ingrid do well together. Theresa read and enjoyed three books twice. (Heidi, Black Beauty, and Anne of Green Gables.)
We have a wonderful country. Every area we drove or hiked through has a very special beauty all it’s own. (Yes the prairie is quite special in it’s own right too!) We saw prairie dogs, chipmunks, ground squirrels, deer, marmots and big horned sheep. It took me only about 3 days to find the r e l a x button. Once pushed, life was much more, well, relaxed!
Thank you everyone for your prayers. Lots more went on and I will share it with you in the coming days.
Oh, before I forget. Last night after I put the girls in bed, I went outside in the dark, raised my arms and said very quietly, “thank you God and Sarah”. Just as I finished, a firework shot into the air and exploded. I guess someone let me know that I was welcome!
Peace to all.
Chris
Wednesday, July 21, 2004 5:07 PM CDT
Welcome all from the Colorado mountains!
I'm at the public library so this update will be quick.
The trip out here was pretty nice. No undo hassles or overly fussy kids. Our place here in Georgetown is called the Centennial Mill House and it is on the road that leads up on of the passes. The girls love it! And Colorado. Zoe wants to "stay forever" and Theresa calls this place "luxury". Ingrid is wrapping Grandpa Pal around her finger with her cute smiles and words. Sue is doing well also. Miss T., Zoe and I took our first real hike at 11,500 feet on Monday. The first part of the trail was slightly downhill, to a beautiful alpine lake. But when we had to come back up, They stopped running. The altitude really slowed them up!
It was neat to see their differences. Theresa walked next to me, talking all the time and complaining that her legs hurt. While Zoeboe was a trooper. She marched ahead, stopping only for short breaks. She wanted to go and explore!
Tomorrow we are planning to go to St. Marys glacier. it is a good hike, but we will take our time.
The air is pure, Clear creek is running full, the scenery is beautiful, and the company is great..... Life is good!
Peace and love to all. I will update again when we get home on the 28th.
Chris.
Friday, July 16, 2004 9:47 AM CDT
Hello all!
No! We have not gone away. Our power is out for the 4th day in a row! LG&E says that it will probably the end of the weekend before being restored!
Our trip to CO. starts Tonight. Pray for our safe trip! I am now Lantus free. (at least for the time being.) No insulin required! I am still praying for complete healing of this diabetes thing!!
Love to you all, Thank you so much! I will try to update from CO. And fill you in.
Chris.
Saturday, July 10, 2004 6:51 PM CDT
Hello everyone. We are still here.
Sorry about not updating sooner. I felt like taking a break. Things have been relatively calm around here.
The doctor has suggested that I reduce my Lantus (long acting insulin) again to 2 units at bedtime. Down from 3 a week earlier. She is pretty sure that I am in the “honeymoon phase”. And that eventually my pancreas will quit and I will be totally insulin dependent. The big question in her mind is WHEN this will happen. Everyone is different. It is quite possible that I will be off insulin completely for a “while”. It is odd to me that while I feel very good, continue my years old exercise program, and am in great physical shape (resting heart rate at 50), my pancreas islet cells are dying. It seems more likely to me that I have a pancreas that just functions at a lower level than “normal”. And that the stress from Sarah’s death kind of pushed me over the edge. At any rate, I will continue to monitor my glucose levels 4 times per day, and take the appropriate actions. That still doesn’t prevent me from praying for complete healing! Stay tuned!
The other night the Hoyles came over for dinner. What a really nice family. I made Basil Pesto Salmon on the grill and boy it was good! I don’t get the opportunity to cook for adults that often so it was especially nice. Thanks Hoyles!
Miss T. went to a friend’s tea party earlier today. She had a great time. They acted like ladies and dressed up in their finest clothes. They also put on hats, gloves and put on purses. Theresa also loved the china tea pot that came in her goodie bag. A great time was had by all.
A final note. Next Friday and Saturday, I am taking the family on a well deserved vacation to the Colorado mountains for 10 days! Sue and Ralph are going too. We are all getting pretty excited. It has been 6 years since Sarah (with baby tummy Zoe), Theresa and I have been there.
Thank you all for your love, support and help. We are very grateful for every one of you. May God bless each of you.
Chris
Monday, July 5, 2004 7:10 PM CDT
Hi everyone.
We had an enjoyable visit to my sister and brother-in-law’s house yesterday. The girls were all very excited to play with the cousins. And I had a good time with the family also. The muscles were a little sore from the games played but not too bad.
The most amazing thing was the fireworks show put on by the neighbor! The street was packed with cars and onlookers. He fired off about 13,500 shells over a 45 minute period! I believe the term pyromaniac is in order! That was quite a show. Theresa decided to stay inside and watch out the window. Loud noises are a little frightening to her. Zoebo on the other hand, sat right beside me in the grass all wrapped up in a warm blanket. She was a little scared at first. But after 10 to 20 minutes of constant fireworks, she settled down and laid down on my lap. Ingrid had a very busy no-nap day. And I was able to put her down before the show started. Yep, she slept through the whole thing.
What a great country we have where someone can put on a fireworks show like that just because he wants to! I hope all of you have had a safe and enjoyable weekend.
Peace.
Chris
Friday, July 2, 2004 8:39 PM CDT
Hello everyone.
You know, some days it takes an almost inhuman level of patience to be a good parent. The girls minds, bodies and emotions have been going all over the place today. It’s challenging to say the least! BUT, there is this magical moment in the evening that makes it all worthwhile. Before I do my evening prayer and reading, I visit each one of the sleeping girls and pray over them. Sarah and I started this when Theresa was a small infant. Seeing them resting peacefully is truly a joy. And I still feel Sarah right beside me as I pray.
I hope everyone has a happy and safe July 4th weekend. We are going to my sister’s house to watch fireworks and stay the night. It should be fun.
Love and peace to all.
Chris
Monday, June 28, 2004 7:51 PM CDT
Hello good people.
Today is one of those days where long awaited “stuff” finally got completed. Many years ago early in Sarah and my marriage, the decision was made for me to do all the financial stuff. Bills, retirement investing, etc. Actually, Sarah hated money matters. She was really terrified about making a mathematical mistake. I on the other hand enjoy money matters and find it easy to do. (Another expression of our great complementary gifts). Frugality was a common trait for both of us. Well, in Saturday’s mail came the long awaited social security death benefit for the girls from Sarah’s SSI account. I filed the papers about 6 months ago. Isn’t the federal government amazing at how “fast” it can process paperwork!?... NOT!
Sarah and I had talked many times about teaching the girls good financial stewardship. Part of that plan was to teach them about saving and investing. Well, Sarah’s check has enabled them to get a jump start. Each girl now has their own little retirement account. I had already set up their own savings accounts at the bank. Perhaps in several years, they may get a checking account too. Sarah and I stressed with the girls (and I still do to this day) the importance of using your money 3 ways. Spending, saving and sharing. The importance being finding a balance among the three without excluding any one or two. Theresa and Zoe are really catching on. They helped in the design of Sarah’s grave stone so now they want to help pay for it. With some more work in the years to come, all three should have a good sense about the wise use of money. (Thank you my dear!)
Another quick note. My Lantus level has been reduced again from 4 units to 3 at bed time. As far as insulin levels go, this is a paltry quantity I am taking. A good benefit of taking such a low dose, is that my blood glucose level doesn’t seem to crash like it had when I was on heavier dosages. Each evening I pray for a complete healing from diabetes. And to have the strength and wisdom to do what he asks of me.
Peace everyone.
Chris
Thursday, June 24, 2004 8:27 PM CDT
Good evening.
Today was one of those days where I felt Sarah’s hand guiding me and clearing the way for me. I will explain. This morning I went over to the monument company to pick out an appropriate grave marker. Several months ago, the girls all said with a resounding voice that they wanted the marker to say “world’s greatest mommy”. Zoebo was also pretty adamant about having an angel on it too. They have been very consistent with these requests so that’s what I have decided to have engraved. I did however, want the marker to reflect something for me also. I just couldn’t think of what to say. The marker is fairly small and I just assumed that the kid’s request, the angel, and the pertinent name and dates would take care of all the space. Charlie (the monument friend) looked up at me and said, “I have enough space to put ‘beloved wife’ under the dates.” That was it! Simple, direct and full of the feelings I have for Sarah. (I felt Sarah say YEA!)
The next part was also very interesting. Charlie said to me that when he called the cemetery, he was quite surprised to find that the grave site next to Sarah had not been filled after nearly six months. All the other ones in that area had been filled. I knew what that meant. After I left the monument place I went straight to the cemetery and BOUGHT the grave site next to my beloved wife! The cemetery folks were not holding that plot for any particular purpose. It was just a fluke that it was not used yet. That is where I disagree. As soon as I bought that grave site, two things happened almost simultaneously. First, Sarah “said” to me in her direct and matter-of-fact way, “I’ve been saving this space next to me for months, what took you so long?” And I said out loud to myself, “There dear, now we will be together till we are dust, are you happy?” The whole thing felt rather comical, but I was quite happy and relieved. Additionally, the prices for the grave were going to go up in 2 days! The sense I felt was that “we” were there together buying that grave site.
Last night, I was having a little difficulty falling to sleep. Then I remembered what I use to do for Sarah to help her fall to sleep. I would tell her a story. These weren't any stories these were stories about subjects she felt were incredibly BORING! Her favorite put-me-to-sleep-story had to be: How to make..... dirt! I would speak softly and describe in great detail the weathering processes, chemical changes and mechanical forces required to make dirt from rock. Usually within 5 to 10 minutes she was gone. I had a vast collection of snoozers for her to pick from. They ranged from steam engines to astronomy to wind turbines to whatever. So I just started talking to myself, and before long, I was tired and fell to sleep.
Good night all.
We love you very much!
Chris
Monday, June 21, 2004 7:11 PM CDT
Happy father’s day plus one everyone.
Yesterday the girls fixed me breakfast-in-bed. A cheesy egg, cereal, yogurt and water. Yum yum? They told me the night before that I could sleep in. However, their enthusiasm was too much to contain when they got up. So they woke me up at about 6:30 am with the same tray they used for Sarah on mother’s day last year. Those girls truly are gifts. To see the pride and excitement in their eyes is definitely worth an early rise.
Late in the afternoon on Saturday I received a couple of beautiful father’s day letters from folks. One was from an old doula client of Sarah’s. Her husband actually wrote the note. It was incredibly powerful, sad and beautiful all at once. (Sarah just had a way of bringing peace, competence and joy into the lives of people during childbirth. It was a fantastic gift.) You see, Their last child died at childbirth on June 8th from a collapsed umbilical cord. Then he described how they both pictured Sarah cradling little Naomi in her arms in heaven. And they felt comforted. Sarah, your gift of love is still at work even when you are not here! Thank you folks so much for sharing that with me.
Tonight, the girls and I walked up to the Dairy Delight for ice cream. That was our first trip of the year. (It is about a mile and a half round trip.) I asked them if they remembered doing this last year. Theresa said yes, but Zoe was fuzzy on the details. But they do remember having a great time doing it with mommy. Sarah and I started walking there when I use to carry Theresa in the back pack! We had done it many times during the summer for about 6 years or more. But this was the first time Sarah was not with us. And it hit me like a ton of bricks when I sat down on the steps of St. Rita’s school! Theresa said, “daddy, you sit on this step because mommy use to sit on that one.” We talked about it, and shared our thoughts and feelings. And everyone (even Ingrid) agreed unanimously that we should continue doing this for the foreseeable future! At the moment when I felt really sad, I knew Sarah was there laughing at Zoebo’s chocolate ice cream covered face! It’s funny how sometimes the simplest things can be so profound.
I want to thank our Cathedral of the Assumption Choir for all your gifts and support you have show my family during the past few years. You guys are the greatest! AND, for all you who didn’t know, they are leaving for Ireland and England on a singing tour. Sarah always loved singing with this group. And I think the feeling was mutual. Be safe, enjoy and knock their socks off!
Thank you everyone.
Peace.
Chris
Friday, June 18, 2004 7:54 PM CDT
Hello everyone.
It’s been hot muggy and stormy in the Ohio valley this past week or two. And because of that, the older girls have wanted to stay inside most of the day. ( I guess I can’t blame them.) Ingrid most enjoys hanging around me. Lately she has been waking up at 1 or 2 am for a couple of hours. UGH!! Consequently, I feel more drained by day’s end. Sometimes I just have to sit back and remember that raising three kids is a great deal of work! And try not to overestimate what can be done in a day. Sarah and I used to say that if we didn’t get something done today, don’t worry, it will wait for us..... and pile up!
Over the past several days, I have been thinking about what I have learned from Sarah’s death and my disease. And I thought I would share some of it with you. Some of these may seem like no brainers, but they all have significance to me.
1) The struggle, suffering and death of Sarah has profoundly affected my faith. My understand has been strengthened, broadened and more completed. I just know that she is safely with God. Thy will be done.
2) All life events are just that events. It is how I interpret and act upon them that influences my success or failure as a person. (My definition of success is defined as a person who is fully alive, content and using their own special gifts to make the world a better place.) I always have looked at the glass as being half full. And everything that happens has it’s own value.
3) Our window of time here on earth is really very, very short compared to eternity. It is however, an incredibly important and special time. I am more compassionate and understanding to just about everybody. Several weeks ago when I was in the Jewish Hospital emergency room, I got to spend several hours next to an old woman who was in for an unspecified serious heart problem. The curtain was drawn so I never saw her, but she was quite vocal, terrified and very, very sad. I could tell in the sound of her voice and her descriptions of the many ailments and failures as a mother she had through the years that her life was full of regret. To top it off, her son came to “visit” her in this incredibly frail condition and he called her a bitch! The police came to remove him.
4) Everything happens for a purpose. Sometimes it takes me a while to figure it out, but eventually I stumble upon a reason that makes sense.
5) Love is stronger than death. Sarah is dead but I still love her, and so do the girls. And we all feel her love for us. It is as simple as that.
6) Eternity changes the meaning of time. Or more specifically, time has no meaning when eternity is present. Past, present and future all come together. The only time that really matters is now. (I hope that one is not too cerebral or weird.)
7) The love and support of a community is incredibly valuable. I have not lost much sleep over these past several months because I (we) have felt taken care of by the generosity, prayers and support of all of YOU! Thank you all from the bottom of my heart!
Peace. Sleep well tonight.
Chris
Tuesday, June 15, 2004 7:24 PM CDT
Good evening all.
The girls are back!. Grandma Sue and Miss Theresa had a wonderful time visiting the cousins in CA. Thank you cousins for your wonderful and gracious hospitality. By the time the crew reached Louisville, Sue was worn out but Theresa was wound up! She and Zoe (and Ingrid too!) yacked and yacked nonstop for the rest of the evening. It was great to hear Theresa relate story after story of the “adventure.” I just know that Sarah was smiling down on them from heaven. I am very glad they are back. For the past two days I have been telling Zoe and Ingrid that we will go to the airport on Tuesday to pick up Mommy and Theresa. It’s just automatic. Sometimes it was 10 or 20 seconds later when I caught myself. Sue said she and Theresa had a great time.
It’s been a fairly quiet week around here. Zoe discovered that she could take the initiative on a whole host of things with Theresa in CA. She would run up to me and say, dad can I do this...... can I do that?... I said sure as long as she remembered to clean up one set of toys, notebooks, etc. before doing something else. And little miss Ingrid was right in the middle of things! My oh my is she a determined little girl. Her vocabulary is pretty amazing also. Last night at dinner, Ingy said to me, “actually, I don’t prefer hamburger.” She reminds me of Theresa at that age. And Ingrid has inherited Sarah’s insect fright. You would think the world was coming to an end because a fly landed on her knee. Silly girl.
Over the past several weeks I have taken to eating a salad for lunch and dinner plus the main dish. Zoe and Ingrid have been asking me if they could eat particular things from my salad. Little by little I have been introducing them to the various greens. Now they want their own salad at lunch and dinner. They are very specific though. It is amazing how much almost unconscience actions influence your kids behavior. It certainly keeps me on my toes.
Thank you Grandma for watching over miss T. these past several days. I can understand why you are so tired! Thank you Grandpa pal for providing company and adult conversation here at home. And thank you cousins for your wonderful gift!
Peace
Chris
Saturday, June 12, 2004 6:56 PM CDT
Hello all.
I was reading Sarah’s web site entries for last year and realized that today is the first anniversary of the “blessed dresser”. She was really thrilled to have me make that piece for her. And in the morning when the sun shines through the window, the quilted cherry grain patterns really stand out. It meant a lot to me when I made it for her. Now, it feels irreplaceable! It is still loaded with her clothes. When I feel a bit low, all I have to do is open a drawer, take a look, sniff, and Sarah is still with me.
I have kept a lot of momentos of Sarah around. It seems that each one triggers a different memory of our life together. It’s not like I (we) are not moving ahead with life. It is more like the memories triggered from her stuff reinforce the very deep love we have for her and that she had for us. And that’s a good thing! The biggest momentos of her love will hopefully be around till I’m gone. And they are the three girls. Sarah’s great desire in life is being realized on a daily basis through them. She done good!
Yesterday I had my 6 week follow-up visit with the endocrinologist. She said that I am doing good and do not need to give her weekly glucose summaries anymore. She changed my insulin levels again to no insulin with meals, and 5 units Lantus at bedtime. It’s hard to get excited with the reduced dosages because the expectation is that they will go up again when my pancreas fails to produce insulin. I simply pray that my pancreas will always produce enough insulin. My weight is level at 175 lbs. and blood pressure is normal.
Sue and Theresa must be having a great time in California. I have heard nothing. No news is good news! Zoe and Ingrid have adapted pretty well to her absence. Zoe likes to sleep in Theresa’s bed. All of us here have been doing pretty well together also.
Thank you everyone for your prayers, support and love.
Chris K.
Thursday, June 10, 2004 5:48 PM CDT
Good evening again everyone.
Miss Theresa had a great flight to CA. with grandma Hughes yesterday. She (T) called our house about 5:30 pm. She said, “Hi daddy!, may I speak to Zoe please.” And that was it for OUR conversation! She talked to Zoe for 5 minutes or so. Grandma told me that all is going well. I love the fact that T, Z, and I, care for each other so much. That was one of Sarah’s greatest hopes for the girls. Well my dear, it is truly being realized.
Speaking of Sarah, I felt a sharp pain of loss yesterday as I drove past the funeral home where we had the viewing. The thought of my most beautiful love laying there in the basement sprawled out on a cold metal table really disturbed and angered me. The feelings didn’t last long, but they were powerful. And then as I watched on tv former President Reagan’s ceremony at the capitol rotunda, I felt all those feelings of loss pour over me again. Part of it was for President Reagan, but a lot of it was for Sarah. I said quietly to the tv, “Tell Ron I said hi Sarah.” The part that really, really got me the most, was when the choir sang America the Beautiful. There are very few things in life that can melt me more than that song! Yes, I am a very patriotic sap. And after traveling for thousands of miles by bicycle all over the country, America the Beautiful has an additional and powerful meaning to me.
tomorrow, I have an appointment with the doctor. I have lots of questions I hope to get answered. Overall, everyone I talk to says I am doing very well, and in good control. Thank you everyone for your prayers and support and love. We continue to live and grow, as Sarah would expect.
Peace to you all.
Chris
Monday, June 7, 2004 7:04 PM CDT
Good evening everyone:
The family and I just got back from a whirlwind tour of Ohio and Indiana. My nephew Ben’s graduation was Sunday in Berne Indiana. Before we went there we had to spend the night at venerable Aunt Joanie’s place in Greenville, Ohio. She set up a pool for the girls and they were like fish. Ingy was in and out many times. It was funny to see her jaw shivering and her body shaking even though she still wanted to swim. After Ben’s graduation party, we headed to Muncie to stay with my folks for the night.
We had a great weekend. Thank you so much family! The kids are completely wiped out now. (Hopefully they will sleep till at least 7 am!) I am feeling pretty tired myself. Just before we left home, I got a call from the doctor’s office. My long acting Lantus has been reduced again to 6 units at bedtime. I know it may seem impossible to be cured of diabetes, but that doesn’t keep me from praying for it!
Wednesday is Miss Theresa’s and grandma Hughes’ big day. They are flying out to California to stay at a cousin’s house for a few days and watch him make his first communion! Theresa is very excited about her first jet trip. Zoebo was also invited, but I thought that 4 to 5 hours in a plane would be a little too much for Sue. That’s ok, Zoebo will get her chance.
Thanks everybody. We love you all. Good night... ZZZZZZZZZZZZZZZzzzzzzzz....
Wednesday, June 2, 2004 7:25 PM CDT
Hello all:
Sorry about not updating lately. We have had some horrendous thunderstorms and a dozen or so tornados around Louisville these past few days! Every time I sat down to update, the lightning would increase and the tornado warning siren would go off. Sunday afternoon and evening were scary. We had two waves of storms come through. The second wave hit around 10 to 11 pm. Okolona was in the path of a “doppler indicated tornado”. I woke the kids and took them to the basement. They were scared, but all I could think of at that moment was - first Sarah, then diabetes, NOW MY HOME! Thankfully, (for us), the path of this particular tornado stayed a mile or so south, and we escaped unscathed. I like to think that Sarah had something to do with that.
Zoebo is starting to like this idea of reading. She can actually read a lot of stuff, however she gets embarrassed easily when someone else asks her to read. And quite honestly, I was poor at reading out loud until I started reading to Theresa regularly. But, soon she will be reading with confidence.
The other day Theresa and I were playing kickball in the back yard. We kind of use baseball type rules with some modifications. And as long as Theresa was doing well, the rules were fine. But when it came my turn to kick the ball, she said that the rules were unfair. It’s not like I pounded the ball or anything of the sort. She just didn’t like the fact that I could score a run or two also. After much angst and wailing, we sat down to discuss things. I told her that “fair play” meant that each one of us has the same chance. And that the “winner” earned their place because they could perform or do something better than the other person. It does not mean that the “winner” is a better person, they just have a better ability or desire to do something under the same rules as other people. She won anyway 8 to 3. It occurred to me a little while later that I just explained to her a fundamental rule of life and business in a democracy! Wow.... all over a game of kickball :)
I have had my Lantus reduced to 7 units (down from 8) at bedtime. I find myself constantly thinking about this diabetes thing whenever I think about food. The two have become inextricably linked. And overall it’s a bummer. I want so badly to not have this disease, however reality does not agree. It’s possible that I have a pancreas that produces only a small quantity of insulin, and has for many years. It’s just that my regular exercise has kept the blood glucose levels in check. I have a meeting with my Endocrinologist next week.
One final note. last night as I was putting Ingrid to bed, she looked at me and smiled really big and said, “ mommy’s in bed with me!” Thank you my dear. I love you, and always will.
Chris
Friday, May 28, 2004 8:14 PM CDT
Good evening folks:
I pray that everyone will have a safe holiday weekend. Remember to thank a vet!
Things are going along pretty well around here. I spotted a mosquito on Ingy’s face at about 75 feet so I know my eyes are back. We had some really powerful storms roar through here last night. Tornados hit just north and east of our place. We just got 3 or 4 inches of rain!
A couple of nights ago Miss T. had her piano recital in the “big hall” at the University of Louisville School of Music. She did great. It was so cute to watch her walk up onto the stage with her nose in the air and bow before and after playing. She played 3 simple songs strictly from memory. Zoebo was there and I know Sarah was watching. Miss T. has Sarah’s gift for music.
Yesterday while I was working on Donna and Lee’s project in the basement, Theresa, Zoe and Ingrid began playing a very involved game together. I stopped because I heard unbridled laughter from all three at the same time. They were simply having a ball dragging each other around the basement floor on an old sheet. Each girl had a specific name, role and even accent! The story was a compilation of books, activities and barbie stuff. It was after I watched for a little while that I realized how incredibly blessed I am by God for such angels. Ya know, it’s hard to have a tough day when you hear the laughter of little children.
Peace everyone. Thank you so much for your continued prayers, gifts and help. I know that our family is truly surrounded by angels. YOU are those angels!
Chris
Monday, May 24, 2004 7:39 PM CDT
Hello everybody.
It was 4 months ago Saturday when Sarah left us for heaven. I’ve been running through my mind many of the feelings and thoughts over the past 4 months and an overwhelming calmness seems to be most prevalent. There is no doubt that we miss her. But I can honestly say that most every day felt special. Sarah and I both knew almost instinctively that our love for each other and our children was a gift from God. And because of that, I don’t feel a massive emptiness inside. In fact, I feel pretty fortunate to have been (and continue to) love in such a wonderful way. After all, we are all here for a finite term. When God is kept at our center, we can ride out these types of hardships and actually grow from them.
I met with my parents grief group last Saturday and we talked about what it is like to raise the kids after you loose your spouse. So much of our discussion focused on getting the kids up, fed, off to school and to the myriad of extracurricular activities. It was at this point that I realized how really different and simple our lifestyle is compared to the “average.” My heart went out to them. These poor folks are getting by on very little sleep as they try to battle the next day. And of course their children act out because they feel the stress and strain too.
On a brighter note. I was putting Ingrid to bed last night when she asked me to sing her the “A D C song”. I rocked her back and forth singing ABCD... and she slowly memorized the song. After about 5 or 6 times she was singing it by her self! It was great. She also reminded me about the rubbing her hand softly trick. Sarah used to do that to help her go to sleep. And today, I found a scribbled picture and a crayon colored toilet paper tube on Sarah’s side of the bed. Ingrid ran to me and said she made them for mommy. I love her!
One final note. I was reading my Catholic weekly newspaper and found an article on a woman who was recently canonized (sainthood). She gave birth to her healthy baby and then died shortly after from uterine cancer.... Hmmmmm
Thank you all for your love and prayers.
ps. My vision is almost totally restored YEAH!!
Chris
Friday, May 21, 2004 7:57 PM CDT
Hello everyone.
It has been a busy week around here. I have had another reduction in my quantity of injected insulin. 1/2 unit Novalog at dinner, 8 units Lantus at bedtime. This is a direct result of keeping my glucose levels in good control. Back in the days of yore, I was a “test subject “ at the Human Performance Lab at Ball State University. We did a lot of research on glucose uptake, glycogen storage, variable diets, etc. to determine the affect on athletic performance. And I am willing to bet that a lot of the information surrounding diabetic dieting has its roots in that research. To put it simply, this diet stuff is familiar to me. I am glad though, that we don’t have to have muscle biopsies after exercising to exhaustion!
Theresa, Zoe, Ingrid and I were in Meijers the other day and had to do a double take. A woman was inspecting the lettuce and when I looked at her profile, my jaw dropped. I asked Theresa to look at her too and tell me who she looked like. Her jaw dropped too! This woman looked very much like SARAH! Same height, build, facial features, clothes and hair! There were only 2 slight differences. Her eyes were a little closer together and she was about 50 or so. All the girls were amazed and very quiet for the rest of the trip. I just smiled at her.
I went to Meijers in the first place to get some more bread flour. And after this last batch of bread , I think I have it down pretty well. In fact, they should just give me the blue ribbon and send the other contestants home. My bread is killer! How’s that for modesty? I must admit. I did watch Sarah pretty carefully for 10 years or so.
A few weeks ago, I found another old roll of film. This time it was a 35 mm roll and easily printable. It was quite intriguing to me because my estimate was that it was at least 15 years old, may be older. I had prints made as well as a disk so that I could manipulate the photo’s on the computer to bring out better detail if necessary. When I opened the package, the first picture I saw was my older brother Bill when he was in his early 20’s! That’s probably 25 years ago! The color saturation was poor on most of the photos but they were there. Nope, Sarah wasn’t in any of them.
The other night I was reading Isaiah before bed and I came upon a section where God is promising the Israelites that his word of salvation will never leave them. He will always be their God. Sarah wrote in the margin: “I accept this promise oh Lord!” That was comforting in a mysterious way to me.
Thank you everyone, we love you all.
Chris and the girls
Sunday, May 16, 2004 8:19 PM CDT
Good evening everyone.
I was going through some more paperwork-of-death stuff today when I came across Sarah’s 2004 monthly diary. Inside the front page she wrote a famous quote.
“The secret to contentment is the realization that life is a gift not a right. Today is the tomorrow you worried about yesterday.... and all is well.”
I just stopped for a moment and really let those two sentences soak in. They brought a comfortable sense of peace to me. We really are all gifts. Gifts to each other and to this world. Sarah and I always considered Theresa, Zoe and Ingrid as gifts to us from God. We don’t own them, or rule over them like a king and queen. We (me) guide them, nurture them, love them, discipline them with the best of abilities so that they will discover their own gifts to share with others. Parenting takes on an entirely new meaning when you think of children as gifts. It is also a great deal of work!
The “worry” sentence struck a chord in me also. I like to plan and think about things long before the arrival date. Sometimes the “what if’s” and “suppose”’s cloud my mind so much that I get paralyzed into inaction. Worring about tomorrow robs me of the joy in this day. And when the “big day” finally arrives, it is usually no big deal anyway. But I am learning.
Sarah’s death is tragic and it still hurts at different times and in different ways. She will always be at my side. I just know it. Her death has also created a new opportunity for growth for our family. We all understand much better how fragile life is and how important it is to respect the gifts in each one of us. None of us is perfect. But as long as we keep our eyes focused on the ultimate goal of getting to heaven, all other challenges in life will fall into line.
Thank you all for your love, prayers and of course food!
Chris
Friday, May 14, 2004 8:39 PM CDT
Hello all.
Tonight was a special night in our household. Sue and I were rummaging through the freezer and found a great big frozen lasagna. Upon further inspection, we discovered that Sarah had made it! We cooked it up and it was very nice! I didn’t realize how much I missed her cooking. The great thing about it is that now I have leftovers for a couple of days! Thank you my dear for continuing to feed us. I miss you.
I think that Sarah is also very proud of the girls. Today we went to the library and Sam’s Club and on 3 separate occasions they spontaneously said please and thank you to different adults who helped them. And each of those times the adults were duly impressed with their manners. The girls didn’t think too much of it, but I was quite pleased. A few nights ago we had dinner at Sue and Ralph’s house and Ingrid told everyone what color of clothes they were wearing! Gold, yellow, blue, pink she just pointed to them and blurted them out. I love it.
I received a call from my endocrinologist today. And based on my glucose levels during the past week, she has decided to reduce my insulin quantity even further. YEA! It seems that I am controlling things pretty well. 1 unit Novolog at dinner and 10 units Lantus at bedtime. My eyes are coming around more too. I can almost read this update without my 1.5x glasses.
The family is making steady progress on all fronts. Thank you for your prayers and loving support!
Chris
Wednesday, May 12, 2004 8:44 PM CDT
Good evening everyone.
I received my lab results today in the mail. My cortisol was normal, and pancreatic antibodies were evident in my blood. The antibodies indicate that I am a Type 1 diabetic. PHOOEY, PHOOEY and more PHOOEY!!! 90 to 95% of diabetics are Type 2. (late onset). The remaining 5% are Type 1. And the large majority of Type 1 diabetics are kids. This puts me in that little, tiny 1 1/2 percentage of type 1 diabetics that have symptoms long after adolescence. And most Type 1 adult onset people have had a major viral infection that brought about the diabetes. I have not been sick for a long time. I have, however, had a tiny quantity of S T R E S S during the past 3 months. And it was at Sarah’s viewing that I first became aware of my thirst and urination increasing.
As I was feeling glum over the news, I opened a form letter Sarah received from a missionary group. Inside it was a prayer card with the famous saying:
Lord grant me acceptance of the things I cannot change,
courage to change that which I can,
and the wisdom to know the difference.
After I read that, I knew Sarah had a hand in it. Because that is exactly what I needed to read at that exact time. It felt as if she was saying, no sweat, you can deal with this. As I mentioned before, Sarah will be with us for a long time. :)
The girls are doing great. This afternoon, I turned on the sprinkler and they had a blast. How can you feel sad when you look out the window and see three of the most wonderful children on earth enjoying themselves so completely? God really knows how to keep you focused on life in the present.
Peace,
Chris
Monday, May 10, 2004 8:20 PM CDT
Greetings everyone.
It’s amazing just how much better I feel when my sugars are under control! The only downside is that I am doing more and I am tired by the end of the day anyway. But I always told Sarah that being tired from physical work is much preferred over being tired from mental stress. The girls and I have developed a great schedule for the week. I work on my furniture projects on Monday, Thursday and Friday; and they get Tuesday, Wednesday and the weekend. (Planning is another indicator that I am feeling better.)
My insulin schedule has been modified. Now I take insulin only at dinner and bedtime. I had been taking it at breakfast and lunch too the previous week. I seem to have a pretty good handle on the diet-insulin-exercise thing. The girls pray each evening for complete healing from diabetes. That would be awesome. My vision is starting to get better. I hope it clears soon. There is nothing more humbling that to go from 20/13 vision one week to near blindness the next. Patience is the call word.
Mother’s day came and went pretty smoothly this year. It was actually very nice. We had a cook out and celebrated with grandma and grampa pal. It was so nice to just sit outside, relax and talk for several hours. We started planning a summer vacation to the rockies. There was this strange absence of sadness that Sarah was gone. Only later did I realize that the sadness was not there because I felt her close to me. And that was quite comforting. I am willing to bet that the girls and I will hear her voice in our minds and feel her presence for many years to come.
Thank you everyone for your support and prayers. Inside, I feel like the grieving is finally starting to subside. There is a long way to go. But your prayers are helping our whole family.
Peace to you.
Chris
Friday, May 7, 2004 8:25 PM CDT
Good evening all.
Today is Sarah and my 4th anniversary of marriage in the church. We were married during the noon mass at the Cathedral of the Assumption in Louisville. We always liked to tell people that we had the full choir and 750 people attend our wedding. It was a truly beautiful event nestled right in the middle of the mass celebration. Sarah had on an ivory colored dress suit with dynamite looking shoes that hurt her feet. And I had on my best black pinstripe suit and wing tips. Our reception was downstairs. As the saying goes, a great time was had by all.
It’s memories like those that really bring joy to my heart. A few hours after the wedding, we were back home changing diapers and feeding the kiddo’s. Life continues to march onward. Ingy said this evening in bold terms that “mommy is sitting at the chair typing on the computer!” She is still around watching over us. Perhaps that’s why I feel more at peace dealing with my own disease.
Theresa, Zoe, Ingy and I joined the model rocket club this afternoon. Theresa and I went to Hobby Lobby and purchased a model rocket kit. After we got home and assembled it, I took the kids to the local park where we launched it. The girls went nuts! Theresa wants to go back and launch it again tomorrow. I can see Sarah just shaking her head as she says “silly boy!”
Thanks everyone. Our spirits are good, and so is my strength!
Peace
Chris
Tuesday, May 4, 2004 8:44 PM CDT
Hi everyone,
It is still a little tough to see but I bought a pair of 1.5x glasses from Meijers and they help. Today is a good day, however yesterday was very tough. The weight of all that I am dealing with hit home. I had not felt that bad since Sarah died. Ya know you spend your life trying to eat a very good diet, exercise regularly and avoid bad health habits and what do ya get? Ya get diabetes anyway! ARRRRRRRGGGG. (Sarah did the same kind of living and she got cancer anyway.)
It is quite a shock to the system to realize that the body I have taken such good care of is broken. It has changed my perspective on disease. It really can happen to you. The real key to this is learning how to deal with it and move forward. The type of diabetes I have has not been determined yet. And that is OK with me as long as I have an effective way to treat it. I am learning to listen more closely to my body’s signals. Little by little I am getting a handle on the situation.
Life truly is still wonderful. The girls are growing like crazy and the weather continues to improve. Our garden is planted and tomorrow we are going on a hike.
Thank you everyone for your prayers and love. As I have mentioned before, we really do feel the good vibes sent our way and they help us through the day.
Peace,
Chris
Sunday, May 2, 2004 7:36 PM CDT
Hi everybody.
The new medication I am taking is causing me to be unable to focus my eyes right now. It is supposed to be temporary. The doctor recommended that I get a pair of 1.5x or 2x mag. glasses in the meantime. I will write more soon when I can actually see what I am doing!
Thank you all for your love and prayers
Chris
Thursday, April 29, 2004 8:21 PM CDT
Hi everyone.
Well, here is the low down on what is going on with me. First of all, I feel shocked, saddened and discombobulated by this diabetes thing. I’ve always lived a life that was filled with healthy living, a good diet and routine exercise as a way to avoid problems later on in life. I still plan on continuing that lifestyle but in the immortal words of one of my physicians, sometimes genetics suck!
Earlier in the week, I asked my mother-in-law to test my blood sugar. It read high on the glucose meter! That’s 4 to 5 times higher than normal! I started having classic diabetic symptoms on the night of Sarah’s viewing at the funeral home. (dry mouth and thirst). Things did not seem too unusual until this past Sunday. Then I started to urinate at a higher frequency and have dry mouth. I went to the emergency room at Baptist East where things were stabilized. My sugars were brought down significantly and my hydration was brought up via IV.
I came home early the next morning with a diabetic test kit and Humalog (insulin). Later that day I had an appointment with Dr. Murphy. He and an Endocrinologist (Dr. Fakunle) talked amongst themselves and decided that they would feel more comfortable if I was admitted to Jewish Hospital for 24 hrs so that they could be sure to get a handle on what was going on with my body. It seems that I am not your typical diabetic patient. (3 doctors are pretty sure that I have type 1 diabetes, and 3 doctors feel that I have type 2). A peptide test was run to definitively say. I will get the results Friday at the doctor’s office.
At any rate, I came home from Jewish yesterday fully hydrated and on an insulin regimen. (2 units of Novalog with each meal, and 10 units of Lantus at bedtime). I test my glucose level before each meal to see how the insulin is working. So far things seem to be working well. As with all diabetics, diet is very important. I have found after discussions with the diabetic dietitian that my diet overall was pretty good. What happened was that my portions of good food began to increase during the last couple of months because I was not able to derive the necessary “stuff” for my cells to function. I was starving. A quick check of my Ketones confirmed that.
So now I am readjusting my food portions and carbohydrate intake in relation to the level of injected insulin. PHOOEY! I hate diabetes! I used to run high hurdles on the high school track team......It looks like I get to run them in life too!
A very very special thank you to Melanie Ahr, Steve Ahr, The Bodes, my mom, Sue and all those people who have been there for me this past week. I and my family are very appreciative of your support. At some point, I would like to have a big party at my house and invite all of you.
Peace and Love,
Chris
Wednesday, April 28, 2004 8:20 PM CDT
Hello everybody.
Just a very quick note tonight. It seems that I am not finished with major challenges in my life.....I just got back from a hospital stay. I found out that your's truly has diabetes! My glucose is under control right now. There will be a full disclosure tomorrow. I am tired.
Thank you everyone.
Chris
Sunday, April 25, 2004 8:17 PM CDT
Hello everyone.
Today, Sunday was a really good day. Theresa had her first communion. The good things started Saturday morning. I woke up, sat up in bed and began some morning prayers. I prayed that Sarah would be present in spirit with Theresa during her very special day. A few moments later, I noticed that the sun filtered through the trees behind our house and shone directly on an oval portrait of Sarah I have on the dresser. It was touching to see, but what REALLY got me was what I saw behind the portrait!
On the right side of the portrait Sarah had placed a small, beautiful guardian angel statue she had picked up for the girls 6 or 8 months ago. Behind this statue, on the back of the dresser is a picture of Sarah and I from our first Seattle encounter. The light not only shone on Sarah’s portrait. It shone on the guardian angel statue and created this beautiful silhouette of the angel holding Sarah on the picture behind it! Tears welled up in my eyes and I said, yeah, she’s here. The whole thing was so fleeting, but it did remain just long enough for me to show the girls and my sister and niece.
God works in such little, subtle but nonetheless powerful ways sometimes!
Theresa had a great time at her first communion. This day was the culmination of 6 months of study, prayer and preparation. We Catholics take the eucharist very seriously, since we believe that Jesus becomes present in the bread and wine during the sacrament. Theresa’s first communion brought back some wonderful memories for me too. I know Sarah was beaming to see miss T. in her white gown, gloves and veil. I was very proud of her too.
After the festivities at the Cathedral, several family members and friends came back to our home and had a great, easy going cookout. This was the first event since Sarah’s death that I felt able to RELAX! The girls were happy, Theresa was beaming showing everyone her gifts and Ingy was having a ball in a mud hole! (I’ve got pictures!) Thank you all so much for your gifts and hospitality. It was truly a special day.
As I was putting Theresa to bed this evening, she mentioned that my breath smelled like the sacramental wine (grapes). I said that is because I just ate some grapes. She then said how do they get grapes to taste so “bitter”. I told her it’s a process called fermentation. She got very interested and now wants to find books at the library on wine making!
I love that girl.
Thank you all, and have a wonderful week.
Chris
Thursday, April 22, 2004 8:32 PM CDT
Hi everyone.
3 months. It’s been 3 months TODAY since Sarah left me in charge of the kids. I believe she is having a great time in her new place. It is a rare week that I don’t feel a sense of her presence. I still inadvertently reference her name in conversations.
Another one of those Sarah involved past-present-future timing events happened to me yesterday. I had been going through my mail when I came across another letter from a monument company. (There must be at least half a dozen folks who want to make a marker for Sarah’s grave.) I have felt uneasy for months about getting one made because it just didn’t feel right. Something was missing and I didn’t know what.
(present) Well, I opened this letter, read it and then recognized the name of the man who signed it. Charlie is a man Sarah sang with for years while she was in the Cathedral Choir.
(past) Sarah and I had a lighthearted conversation 5 or 6 years ago about who would make our grave stones if we were to die unexpectedly. Sarah said quite simply, “talk to Charlie, he knows what to do”.
(future) Charlie is a very nice man and Sarah always enjoyed his quiet company. He has been making grave stones for over fifty years and now his company can make Sarah’s too.
Finally, all the pieces fit. Sarah is looking out for you too Charlie.
Miss T. is really enjoying her piano lessons. It is a great thing to listen to her practice and build competence and confidence. She especially enjoys the duet pieces she plays with her teacher. In some ways I guess it’s not surprising. Sarah also had that natural love for, and grasp of music. I bet Sarah has a big smile on her face!
One final word tonight. After dinner, Ingrid turned to me and said with great enthusiasm,
“Mommy’s angel is eating a potato!”
Thank you everyone.
Much Love,
Chris
Monday, April 19, 2004 8:50 PM CDT
Good evening.
I’m tired! Daddy gets feeling pretty fatigued when evening rolls around. The past few days have contained normal kid activity, but I am running about 60 percent and that makes the difference. I am going to schedule a physical with the doctor just to make sure that I am not feeling worn out for other reasons. (Perhaps running, mowing the lawn, making 6 loaves of bread and chasing the girls all day has something to do with it!) Also, I can’t diminish the real and profound effect Sarah’s loss still has on me. That grief is just under the surface.
One of the catholic education directors at our church gave a photo to me of Sarah, me and Ingy last Sunday. As I looked at it, it dawned on me that this photo was the last one of her alive. She looked pale, (pale looking in pictures was by no means unusual for Sarah!) but otherwise she and I were just having doughnuts behaving like normal. What a fitting thing.
Early this morning I had a Sarah dream. She was sitting sideways on the couch with her legs folded up. Tea was in a cup she had in her hands and she wore her red sweater. It was a comfortable, quiet setting. I was in the dream and was having a difficult time separating “reality” (Sarah is dead) from “the real world”. People looked at me strangely when I told them Sarah was here. After a few moments of being confused about what was going on, Sarah turned to me and said very calmly: “Chris, I will always be here [available in my dreams], but not seen by others. People may think you are nuts, so don’t tell them you see me.” While this response was humorous, it really did give me a sense of peace.
Later on in the day, I took all three girls to the cemetery to visit mommy. They briefly said they loved her and then ran down to the creek. I, on the other hand, just kneeled down beside the grave and whaled for a few minutes. Afterwards I felt comforted and at peace. However, I still had to chase down the girls and get them back into the car! This grief thing is really strange.
Thank you everyone again for your prayers. Prayers for strength, endurance and peace at heart are very much appreciated.
Love from all of us.
Chris
Friday, April 16, 2004 8:10 PM CDT
Good evening folks.
It’s been another busy day at the K household. If I could just invent a way to harness the energy these three beautiful girls release, I could power the whole house! Their inquisitive minds are constantly on the go as well as their bodies! I think I have found another effective diet. Run around all day chasing kids and carry a mountain of stress on your back! Guaranteed to drop the pounds...... or your money back..... HA!!
Earlier today I heard of a new book out by Sen. John McCain called “Why Courage Matters”. I didn’t get a chance to listen to him talk about it but I began thinking about what being courageous means to me. The shining example that comes to mind is of course Sarah. She never once considered herself courageous in her “battle with cancer.” To her it wasn’t a battle, it was just a nasty disease that will go away when the right drug comes along. In Sarah’s mind, there was always someone in much more dire straits who was courageous. Sarah considered herself blessed not cursed. And after 5 different chemos and 2 sets of radiation, she showed us how to die with dignity and grace. Yes my dear, you were certainly courageous!
It also seems to me that the way Sarah dealt with cancer and death created great inspiration for lots of folks. By simply trying to live a rich loving life in the midst of this disease helped other people gain perspective on their trials. Sarah’s light shone very bright indeed! As I continue walking along this new path with our family I am comforted by Sarah’s courage. She feels close to me. And her legacies keep me living life in the present all day long!
Sarah always mentioned how fortunate she was to be going through this cancer thing with three beautiful daughters. They kept her thinking and living life in the present, just as God wants us all to live. Tomorrow isn’t here yet, so lets live courageously today.
“To everything there is a season, A time for every purpose under Heaven.”
(This famous passage is on a bunch of sticky notes Sarah bought in January.)
We love you all, thank you.
Chris
Wednesday, April 14, 2004 8:53 PM CDT
Good evening all.
What a beautiful spring we are having this year in the Ohio Valley! All the grasses and flower colors seem to be extra vibrant. The dogwoods, red buds and a countless variety of shrubs are really putting on a show. It has been a very long winter and the warm days and natural beauty are welcome around here! Next up the garden!
A couple of days ago the girls and I were sitting at the breakfast table. Zoe leaned over and hugged me saying, daddy you’re all that and a bag of chips! That was great! Sarah used that phrase on me many times. I just hadn’t heard it for a while. Zoebo is such a wonderful loving kid. Last night she spent the night at the Grandparent’s house! Her first time alone! She did great. Although she missed Miss T. When Zoe came home the next morning she enthusiastically embraced Theresa and vice versa. It lifts my heart to see so much affection between sisters. Sarah’s greatest desire was that her daughters would grow up loving each other. They are doing great so far my dear. And I intend to keep it going.
This evening Theresa and I began sorting out all the Sarah photos (not in albums) according to date. I’m guessing 150 to 200 of them. Our only criteria was that some part of Sarah had to be in the photo. Wow what a trip! Theresa loved it and recognized a lot of things in the photos. I, on the other hand, just shook my head thinking how could she be gone? Each time I saw her face, it was like she was talking to me about what was going on in the photo and when. You know Sarah, she wants all the pictures in the right place! I think that I will add captions to each photo too. Hopefully the captions will further reinforce her memory on the girls.
Thank you everyone. This past week my family has felt cradled by your love and prayers. They really do help us out.
Chris
Sunday, April 11, 2004 8:31 PM CDT
Happy Easter everyone!
My councilor told me that significant events and anniversaries were going to bring up a lot of memories and feelings. He was right. Oh man! Holy week in the Catholic tradition is the high time of the church year. It was very common in years past for Sarah and I to be active in many aspects of the worship celebration. Sarah would cantor at 1 or 2 of the masses and I would usually serve at the Easter Vigil Mass with the Archbishop. This year was very different. I felt a huge hole and yet, felt comforted at the same time.
On Thursday evening Theresa and I were invited to participate in the ceremonial foot washing that Jesus did for his 12 decipals. Father Bill and Deacon Pat washed Theresa’s feet and then Theresa washed mine! It was very special for Miss T. and me. Father Bill’s homily dealt with memories both good and bad. And that we should place them on the altar. He gave a strong reference to Sarah’s activities at the church, which caused tears to well up again. And that confirmed to me how close to the surface the grief still is.
As Good Friday came up. I could not help but think of the suffering and extreme pain Sarah had during her last night. A link developed in my mind between Sarah’s suffering and Jesus’ passion. And then I understood in a new way the meaning of his sacrifice. That night before bed, I read from our meditation calendar called “daily message from Medjugorje”. Sarah had gotten this as a gift and reading it became part of our evening routine. Friday night, April 9th said: “You have a large and heavy cross to bear. But do not be afraid to carry it. My Son is here to help you.” I cried again and felt comforted at the same time.
Easter Sunday Mass was beautiful. Ingy was in the nursery, while Theresa, Zoe, Grandma and Grandpa and I were seated together. I was doing great until the entry processional song started. I recovered tho. Fr. Bill gave another salient homily. He talked about the rather anemic response the deciples gave when they first glanced into the empty tomb. They walked away discouraged, confused and sad. That’s kind of the way life is at times. We are in a fog and are not quite sure what to believe especially during times of great stress. But eventually, if we are willing to see it, Jesus is alive in the form of heroes and heroines all around us. That’s were we see him today. I felt better after hearing that.
Thank you all for your love and prayers. Our family prays that each and every one of you have a wonderful Easter.
Chris
Wednesday, April 7, 2004 9:07 PM CDT
Good evening everyone.
It’s really great when the weather finally changes for the better! We can all get outside and enjoy. A few days ago the girls and I did a science session about sound. We went to Home Depot and got some copper pipe, stainless wire and brought it all home to make wind chimes. We spent most of a day learning about how to change the frequencies in pipes and building the chimes. Theresa and Zoe really love hands on learning. They were so excited to get them done. They sound pretty good too!
I am really blessed by these three incredible daughters. The can be very challenging at times no doubt! But, dealing with Sarah’s death would be much more difficult without them. My family is also really blessed by the unselfish giving by so many of you! Thank you! And thank you also Grand Ma Hughes! Sue comes over frequently during the week and just does what needs to be done. Tonight we made bread for the week and fajitas for dinner. She and Ralph really do lighten our load.
As we continue through this grieving process I have noticed something about me. I feel stronger. It’s that 2 steps forward, 1 step back kind of thing. But I really do feel like I am making progress along this new uncharted path. It’s important to be patient and let life unfold. I don’t know when the majority of this healing will be completed, but I do know that God has a way of giving me just what I need when I need it.
Now I feel worn out. Imagine that! HA! With luck the girls will sleep in until ...... 6:30 am! So it is off to bed.
Good night and God bless.
Chris
Sunday, April 4, 2004 7:56 PM CDT
Good evening all
The girls and I had a good time up in Indy this weekend. We went to my youngest sister’s place on Friday to see my mom, aunty and the newest (probably the last) K baby, Jillian. What a sweetheart! My sister Cathy had a NoJo baby sling with her and I showed her how to use it. I never thought I would get the opportunity to use one of those again. Sarah and I used them almost constantly for about 6 years or so. They had such a special place in our hearts. I used a blue/white checked one most often so Sarah gave my bag the nickname “the dad bag”. Cathy was excited to see how it is supposed to be used, and Jillian fell sound asleep while in it. It just felt great, and brought back so many good memories.
Thanks sis.
Later that afternoon we drove to my brother’s place just south of Indy and had a nice rest of the day + Saturday. Pat and her daughter Amy and cousin Abbey took all three girls and kept them well entertained during the whole stay! My older brother Thom, younger brother Matt, and Thom’s son Alex all went out and did “guy things” at the lake cottage. That was good, although I was still a little tired. Thank you family!
As we were getting close to our home Saturday evening Theresa called out and said: “It feels really good to be back home. I’m sooo tired!” The other girls chimed in with those same words. And as a parent, it feels especially gratifying to hear spontaneous words like that. Sarah, my dear, we are doing the right thing.
Love and peace to all of you this Palm Sunday.
Chris
Wednesday, March 31, 2004 8:23 PM CST
Hello folks:
Sometimes the enormity of the task which lies before me hits home. Today was one of those days. It gradually crept up on me throughout the day. It seems that when I have alone time to really think I begin to really feel the load. I have no intention of raising three wonderful children without any assistance. Indeed, I feel very fortunate to have so many incredible people willing to step in frequently and help me out. It’s just that I miss Sarah.
I was talking to Theresa this evening about the road ahead for our family. She listened intently and then wanted to hear a bicycle trip story. Well, we have been going through my old trip journals in order, and this day happened to be the last day of the last trip. As I read about that day (day 62), I also read about how I overcame some extremely demanding obstacles (both physical, emotional) throughout the 3907 mile trip. I read about how so many dozens of events, encounters, and acquaintances expanded my capacity to understand the world God gave us. I recall feeling really, really blessed to experience something that most people would never even dream of doing. And I knew at that point, as well as today, RIGHT NOW, that the challenges in life will be filled with great opportunities to grow!
Thank you daughter. You helped me remember that where there is struggle, God plants a very sweet reward. Keep your eyes on him, and everything else will fall into place.
I also have a picture update! Wally world sent them back to me UNDEVELOPED! They could not develop C-22 processing film. ARRRGGG. So I contacted some very reputable photo people and got an answer. Rocky Mountain National Laboratory will develop them. It will take 6 months to a year, and there is a $45.00 deposit plus no guarantee that it can even be done! It turns out that the C-22 processing used for many years is considered extremely toxic. Some of the chemicals are now banned from sale in the U.S. I guess Sarah has given me her answer about the film!
Thank you everyone for your support.
Chris
Sunday, March 28, 2004 8:29 PM CST
Greetings all.
Life continues here at the Krauskopf home. Miss T. has become interested in two pretty divergent topics lately. The prehistoric hominid “Lucy”, and building a small armoire for her American Girl doll clothes. Archeology and wood working of course! It’s really awesome to watch her mind work.
Zoebo and Ingrid are not to be outdone. They have slowly begun to really work together at building and creating things. Almost every morning, Zoe comes into my bedroom and asks it she can play with Ingrid for a while. (Usually about 6:15). I tell her sure just keep it quiet because Theresa and I want to sleep some more. They have a grand old time for half an hour to 45 minutes. Ingrid has been dry in the mornings too! Yee haa, maybe I get an early one this time.
Last night Ingrid had the stuffy nose which kept waking her (and ME). At about 4 am, after 3 trips and meds., I was about at the end of my rope. Then Ingrid began crying again. I sat up in bed and said “Sarah, I really need your help this time.” I went into Ingy’s room, wrapped her up like a burrito in mommy’s blanket and rocked her gently. A few minutes later she got quiet and I laid her down in bed. She then said to me “you’re a good daddy”. I held back the tears until I got back into my room. Sarah use to say those exact words to me so many times before when I got up to care for the kids in the middle of the night. She was certainly there, and Ingy slept the rest of the night. I love you my dear, and I will always love you.
Sarah’s pictures should be ready tomorrow. I hope they turn out. I will keep you informed.
Thank you everyone. Your support and prayers are really felt in our hearts.
Wednesday, March 24, 2004 7:44 PM CST
Hi everyone.
I am including an excerpt from a letter Sarah sent to me in June of ‘94. We had been developing a great relationship through writing and phone calling for 5 months, and Sarah had just returned from visiting me in Seattle. Here goes.
.... I can’t begin to thank you enough for the wonderful trip to see you. The scenery was breath-taking, the weather was quite accomodating but most of all the company was perfect. As I reflect over the times we spent, I get such a warm, happy feeling - that feeling that “hey - I have finally found that place where I belong...” Thank you so very much with all my heart. I am so glad that I took my brave leap & headed out there. There were many times I had doubts. I feel relaxed, confident, happy & loved when I am with you. It hardly seems possible & yet also seems to be so very real.
I’m looking forward to seeing you in July- it’s only about 1 month away! I am trying not to wish my life away - rather, I’m trying to do as much as I can productively and not dwell on negative things. That’s something I have come to recognize & appreciate about you - your continual positive attitude. I can hear it in your voice & see it in your face..... I am beginning to feel that way more and more. You’re a good influence!
Back on my baby’s arm
It’s my favorite thing
And it’s everything this time.
Back in my baby’s eyes
In the reflection I see
I like how he looks at me.
I’ve been dreaming about this place
I’ve been wanting to believe
It took so long to find this place
I never want to leave.
Back in my baby’s arms.
I like what he sees in me
I’m right where I want to be.
I love you
my prayers are with you.
Sarah
I called Sarah up on the phone an hour or two after I got this letter, and proposed. She accepted.
Good night all.
Chris
Sunday, March 21, 2004 8:38 PM CST
Hello all
What a busy weekend! Aunt Joanie and cousin Heidi came down to take the girls for the day! They arrived at 8:30 and were gone to the zoo by 10. I sat down and watched some t.v. It only took me about 10 minutes before I realized that I was watching “Arthur” on PBS!! Can we say daddy is a little BRAINWASHED from kiddo’s?
Before too long I was off to do some “guy” things with my father in law Ralph, and Jack Young. We ate lunch at an old diner, checked out the civil war fort Duffield. Then we went by Otter Creek park and finally, the tanks at the Patton museum. We all felt a little bit wiped out. But I enjoyed it. Thanks guys.
Shifting gears. I have felt pretty fragile over this past weekend. God I miss Sarah! Tomorrow makes 2 months. Some days it seems so long ago, other days I find myself telling the kids to set mommy’s place at the table! Theresa said something to me this afternoon that seemed really strange. She said that the funeral day was the best day of her life because everyone was there and she could be by mommy. I’ll ask her to explain it to me tomorrow.
I think that I am bringing on a lot of feelings by what I am doing. Lately, just before bed, I have been reading some of the letters Sarah and I wrote to each other during courtship. So much comes flooding back! It’s kind of like I need “proof” that I was not dreaming up the closeness of our relationship during the last 10 years. Well, the proof is definitely there! They are beautiful letters. And so much is vintage Sarah. I will post excerpts from them when the feelings of loss are not so raw. In the mean time, thank you. Thank you for your prayers and love for us. I / we will continue to eat this elephant one small piece at a time.
Chris
Friday, March 19, 2004 8:48 PM CST
Good evening everyone.
It occurred to me today how incredibly fortunate I / we are to have this web site through Caringbridge. They truly are tremendous people for providing this service. (On donations nonetheless!) This has been and continues to be one of the most noble activities that can be had on the internet! Thank you Caringbridge for allowing my wife and myself to share the story of cancer with so many wonderful folks around the world. You provide very good medicine!
Speaking of medicine, time, and lots of it seems to be the best medicine for grieving. Little by little, the waves are calming down. It’s kind of funny, but each time I feel this wave of sadness beginning to well up, I feel a calming reassurance from Sarah. Today for instance, I was heading back home from a job when the sad feelings began. I called home to let Sue know that I was heading back. The phone was busy and the answering service kicked in before the first ring was even finished. Sarah answered, ... or rather her voice answered, “Hello, I’m not able to come to the phone right now” etc..... Her voice talked to me in a way and just at the time I needed it. It’s little things like that that let us know her presence is still here with us.
All the girls said they missed mommy numerous times over the past couple of days. Ingy got creative and asked for mommy’s “mickey shirt” to sleep in. It worked for her. She slept well all night. Theresa and Zoe respond well to little talks and big hugs.
I counted all our love notes from Sarah’s box. There are 73 of them! I also found a box in the basement filled with Sarah’s journals/diaries. They go way back (middle school) and stop promptly after we re-met in the spring of 1994. Hmmm interesting. Someone once told me that when you feel contentment in life, there is no reason to write. Probably some day when the girls get older, they can read those journals. Isn’t that incredible! Sarah left a 15-20 year log of her life. The girls will always know who their mother was through them, and she can guide them on the journey too! Oh my dear, I love you so very much.
Thank you everyone.
Wednesday, March 17, 2004 8:58 PM CST
Happy Saint Pat’s day all
Life has gone along pretty well today. The girls are beginning to take ownership of their responsibilities and that is helping us all. Grandma Sue was here most of the day while I did some work at a clients house. When I got home, Sue said that Ingrid talked almost constantly the whole day! Hmmmm, I wonder where she gets that....
Yesterday, the girls, Donna and I went to Rebecca Ruth’s candy factory in Frankfort with the home school group. It was entertaining and informative, however Ingrid wanted to touch everything. It’s like she has 4 hands. We got to sample some of the wares at the end of the tour. Yum yum! And I thought to myself, 2 bourbon balls should help Ingrid “relax” on the way home. It did, but the other girls were a little wild. Next time, perhaps BOURBON BALLS FOR EVERYONE! ha ha
last night I opened up Sarah’s love letter box and, with a trembling hand, I closed my eyes and pulled out one of the letters. (I remember last month trying to read those letters and really loosing it!) This time it was a card that I had sent to Sarah in June of 94. (We re-met about 5 months earlier and this card was sent about 3 weeks after I proposed.) After I read it, I felt incredibly inspired and happy. So much seems salient today, let alone 10 years ago. Perhaps I will post some of it at a later date.
Thanks once again everyone for you prayers and love. Day by day the family is adjusting to life without mommy’s body around us. I find that a lot of my thoughts still include her input. I think that is good.
Peace to you.
Chris
Monday, March 15, 2004 9:40 PM CST
Greetings all
Ya know, lately I have been reminded that I have normal kids. “But daaaaaaaaaaadd!!!, why do I ALWAYS have to do it!!” This is one of Theresa’s favorite lines. For the past while, the girls have been pushing the edges of the envelope to find out how far they can go against ol’dad. And ol’dad has had to reinforce limits on behavior. In the past this was done in tandem (Sarah and me). Now I have to be more creative!
A few years ago, Sarah printed off a nifty sheet called, 18 ways to avoid a power struggle. A lot of the info makes great sense. And we had used it many times before. So today I reinforced learning about RESPONSIBILITY in our new family order. Basically I asked for their input into jobs that they could do around the house to help out the whole family. I wrote them down and asked T and Z to select the ones they felt comfortable doing. Now they have a pretty piece of paper with all the jobs they selected taped next to their beds. Theresa chose to clean the whole main bathroom, and did a fine job! So if I can get them to remain committed to helping out the whole family, my load should lighten up.
Over the past few weeks I have been hearing people ask me the question of whether or not I will continue to home school the girls. The simple answer is yes, but I thought I would explain why Sarah and I chose home schooling for our girls. First of all, for us, home schooling is much more a way of life than simply bringing a curriculum home. It is not something that most people can or want to do. I work here at home and have exposure to my children all day long. The vast majority of us were schooled in school so we naturally have a certain vision of what “school” should be. The reality is that there are many different, legal and valid ways for children to be educated.
The girls have also taught me and Sarah how they learn best. And their appetite in areas of interest is voracious! It is awesome to watch them learn from their environment. Instead of learning stale facts from a book, they experience the real thing, one on one, in an exciting way. It is hard to talk about home schooling without sounding like I am slamming traditional education. I am not. It’s just that when you have 25 to 30 kids of the same age in one room, you have to teach them in a very different way and at a very different speed.
We have been blessed with very bright, articulate and happy kids who love to play and learn. (Remember my post a while back about Theresa and Martha Stewart.) Some days they shift gears so fast in what they are learning it is hard to keep up! The bottom line is that I see myself as their guide in learning. I want to keep that desire to learn new things active while helping them learn the tools necessary to find the answers to the incessant question, why?
What about socialization? If you think about that word, what does it really mean? Sarah and I decided long ago that our children would learn proper social behavior from us and other adults. The girls also have lots of friends.
I got Sarah’s pictures back from Meijer’s on Saturday. They did not even attempt to develop the film. The processing is called C-22. It is uncommon today, so they said I should go to a good camera store. It just so happened that Wal-Mart will develop that film. I hope I am not disappointed with the results after such a build up..... They said 2 weeks.
Thank you everyone. Especially all of you praying for us and helping us out as we walk down this new road of life.
Chris K.
Thursday, March 11, 2004 8:27 PM CST
Hello all you good people.
I’m not sure how many of you caught the typo from the last update. I sure did, just a little too late to correct it. As my senior English teacher Mrs. Angel would say:
“ANGELS are from heaven..... ANGLES are in math books.” Sorry Judy...
Anyway, life continues to move ahead here. The roller coaster hills are a bit less steep and grief episodes are a bit shorter. There is nothing like active, happy children to keep you in the present. Ingrid is quite a pill sometimes! She is growing so fast and certainly knows who she is. If you call her any other name but Ingrid, she will stop you in your tracks and say “I’M INGRID!!” She is also transitioning out of mid day naps. ugh! Last night she was pretty wired at bed time so I sat her in the rocker with me in the dark room and just talked to her about being born and mommy. We had a delightful quiet conversation and songs. Then out of the blue Ingrid says to me, “mommy’s died, she sings inside me.” What a great little kid!
Miss T. had her first piano lesson in about 2 years today. Oh boy was she excited! When she came home about 7pm, she spent the next hour transcribing her lesson onto new paper. (Just incase the old sheets got lost.) She will go every Thursday afternoon. Just like her mother, she loves music.
Zoebo learned how to jump rope today. And within an hour she was running around the yard jumping rope. She is very well coordinated, and sooo active!! Zoebo also has the greatest laugh.
There is no doubt that God has given Sarah and I some incredible children. Each day I thank him for trusting us.
This evening I came across a Christmas letter Sarah wrote to me a few years ago and I thought I would put it on the web site. Thank you everyone, we love you
Chris K.
Christmas 2000
My dear love,
I thought and thought and thought some more about what to get you for Christmas. “What would Chris really like?” I asked myself. I knew I could get you a trip to Wood craft or some new gadget/tool for your arsenal but that just didn’t seem too personal or meaningful other than to tell you how much I appreciated your work.
I do appreciate your work, but not just your wood work. I appreciate your loving touch with the girls, especially at those times when I am at a marathon birth or busy with one of my numerous singing engagements. I appreciate your thoughtful consideration in doing dishes or other household tasks when I am busy or away, or sometimes just because. I appreciate your faith in God and your willingness to share it with others, especially our daughters.
Often I tell people that I never could have imagined my life as it is now. I am so happy with so many things but most of all I am so happy and blessed to have you as my husband and friend.
I realize that with all this wonderfulness oozing out of you, you might also really just need some time away-some time to just think or sleep or pray or do nothing at all. So for your gift, I want you do go away, for at least a night to Nazareth retreat center and enjoy the quiet. I know how much your like this sort of thing and I want you to do it for you.
I love you with all my heart,
Sarah
Monday, March 8, 2004 8:10 PM CST
Good evening all
Life continues to move forward in the Krauskopf home. I have good days and then some really tough times during some days. The girls seem to be more elevated, lively and happy than I have seen them since Sarah’s illness. It is like the stress and strain have been removed and they feel free again. They are angles.
The other morning I woke up with a very strong feeling of love for the girls. It’s like a new level of understanding and appreciation was found. Then it occurred to me that that is the feeling I must have in order for us to really thrive as a family. We are not only going to make it, we are going to do great! (Thank you my dear....)
A few days ago, Theresa heard on the radio that Martha Stewart was convicted on all 4 counts and could get 20 years in the slammer. She asked me why and then proceeded to ask several more questions about her conduct. Before long, I was drawing graphs on the chalk board, explaining Imaclone stock valuations, insider trading, lying to authorities etc. She followed the story pretty well and then at the end she said, “I wish there were a simpler way of explaining it.” I told her that Martha stole people’s money, lied about it, and got caught. That she understood very well.... But then she asked me “why?”
This afternoon, Theresa, Zoe and I went on our first home school field trip this year. We went to the Louisville Nature Preserve across from the Zoo. We studied amphibians and reptiles. The presentation was pretty tame until the presenter pulled out a 12 foot Burmese Python named Dole! All the kids spent 15 to 20 minutes playing with him. It was great. We went on a small hike in the preserve after the presentation and that wore the girls out. They said they loved the outing. Next up may be a candy factory in Frankfort?
Yesterday I was rummaging through some old boxes looking for Sarah and us photos when I ran across an old undeveloped instamatic camera cartridge. It had been used put not developed. The intriguing thing about it is that it had Sarah Hughes’ name on it. It is old enough for me to believe that it predated her first marriage. I think I will send it out for development. It could be interesting, stay tuned Sarah fans.
Thank you everyone again for your incredible love, support and prayers.
Peace,
Chris K.
Friday, March 5, 2004 11:40 AM CST
Greetings everyone:
My brother-in-law Kent Hughes (Sarah's Brother) sent me an e-mail recently asking if he could post it on Sarah's website. I said sure. It is fairly long and beautifully, simply written. Enjoy his tribute to my wonderful wife.
I would like to tell you a bit about my sister Sarah whom I have known all of my life.
She was born on August 13, 1963, which made her two years and five months younger than I. As I am the eldest, she became my first true friend. My mother has said that as a two year old she followed me around, wanting nothing more than to be the object of her big brother’s affection. We were always a loving family so it wasn’t hard to become close to her and we have remained since. My father called her his “Honey-golden bear”. She had a special place in his heart from the day she was born. Sarah had that way with men she wanted to impress. When she was very young she would look at you with her green eyes and make a humming sound that went like, “mmmMimmmmmMimmmmmi…” that meant she was trying to attract your attention. Sort of like a cat purring. Oddly enough men found this so cute that she always got what she wanted, pretty effective for a three year old!
One of my earliest recollections of childhood was playing a game we called the “mine” game. There was a railroad track behind our house on the south side of Indianapolis. Freight trains ran past often and whenever we heard the horn blow we would run outside to our swing set or if it bad weather, we would sit by the back window in the family room and wait for the train to pass. As it did we would call out “mine!” whenever we saw one of “our” cars pass by. She always liked green best so I got the red ones by default. If it was a nice day and we were outside, we would swing as high as we could on our swing set as the train thundered by, all the while shouting “mine!, mine!, mine!” for our respective cars.
I have few memories that are as sweet and childlike as these. I am sure we fought as big brothers and younger sisters do but I don’t really remember them as much as the fun memories we had. When she got a bit older one of the national gas station chains ran a promotion where you were given a tiger tail to tie to the inside of your car trunk so it would appear that “you had a tiger in your tank”. She took this tail and would tuck it into her pants so it looked as if she had a tiger tail. I have always had an affinity for tigers since.
Our parents moved often when we were young, so as we grew we often played together especially on rainy days when we couldn’t get out and find friends. I don’t remember specifics but I do have many images in my memory that are about childhood play, most of which seem to include Sarah. As time passed and we became teens, we spent less time together on a daily basis but the time we did spend was always somehow different than that spent with other friends. I remember traveling to concerts and competitions for her music. I was always proud that she was so talented at the flute. I was always a bit envious at how she seemed to effortlessly conquer music, a subject that I loved but was mystified by.
Sarah had the ability to power through things. She would compensate for not being the best by being able to outlast any problem. None-the-less she seemed to breeze thru college where she studied nursing. It seemed that she was born to be a caregiver and after college became a labor and delivery nurse in Louisville where she excelled at that as well. I understand that she became one of the nurses who flew on the helicopters out to the boondocks to pick up special care patients and fly them back to Louisville. I believe she even helped deliver a baby in midair once.
Her first marriage was something less than happy, I mention this only because her second has brought such joy and love to her life that only those of us who knew her before can know the difference a good spouse can make. After she divorced her first husband she met Chris whose story you have read already. Her marriage to Chris has been a wonderful and loving one and has been blessed with three beautiful daughters whose countenance and bearing reflect upon Sarah as beacons of light. To see Theresa, Zoë or Ingrid, is to see images of Sarah.
I haven’t thought much about our relationship as brother and sister over the years, I have taken it for granted. It’s easy to do when all seems well, but you often reflect when faced with impending tragedy. I spent a Saturday night in Louisville recently attempting unsuccessfully trying to fall asleep while thinking about Sarah. You know how when your life is in danger, you are supposed to see your life pass in front of your eyes? I watched her life pass in front of my eyes. You see, Sarah was my friend, my first real friend and now I was watching her go and there wasn’t anything I could do about it.
When we spent those last few days in the hospital in Louisville with my parents, her husband and a few friends who had found out about her condition, it was heart rending to sit helplessly and watch her struggle with simple little things we take for granted. How often do we pick up a fork and just eat a bowl of salad and not think about how fortunate we are to do so? I watched her take almost an hour to eat lunch that day, when done she had hardly touched her food.
The medication she was taking for pain and seizures made her almost comatose with sleep and took valuable hours from her life to waken from. It is a two edged sword that the doctor’s use to battle the effects of brain cancer. In order to control seizures, they had to give her medicine that kept brain swelling down; the steroids made her edgy and combative at the slightest irritation thus making conversation and time spent harder to endure, reducing those medicines may have made her less irritated but with the reduction ran the risk that a seizure may have struck at the slightest notice.
Having never experienced a seizure I was unprepared for how helpless and scared I could become when faced with one. Fortunately the one I witnessed was only very slight; Sarah was able to “narrate” her way through it and actually helped the nurse with her care. Prior to the seizure, we were discussing her condition; I asked her if she felt any different having a deadly illness. She said, “I don’t feel like I’m dying. Do I look like I’m dying?” I responded that I didn’t know but as she was the one with a brain tumor I guessed she was the “expert”. We chuckled and continued talking, it was shortly after this exchange that she suddenly lost all contact in the conversation I looked at her to see her eyes fixed and unblinking she rasped, “Gogethelp NOW, gogethelp NOW, gogethelp NOW!” I ran to the nurse’s station and by the time the nurse was bedside, Sarah was struggling, attempting to focus while not falling off the bed. After the episode she slept for about 7 hours. It was so hard to see her there in bed, I wanted to take her in my arms and attempt to force some of my health into her and will the sickness away. I began to feel the helplessness that Chris, her husband has felt for the last year and a half.
Chris is a fantastic man. He is faithful, honest, devout and loyal. He is a wonderful father and husband and adores his wife and daughters. They are life entirety to him. He and I spent some time together that Saturday talking and until then I never knew the true depth of their love for one another. I am again envious of my sister for how much she is truly loved by a spouse. My wife and I have a wonderful relationship but theirs was being tried by a fire that I would not want to test.
As we were preparing to leave Louisville on Saturday, I was worried that I had not said the things I had come down to say. There we were, heading back to Indianapolis and she was asleep from all the meds they gave her for the seizure. We drove out of town but as we passed the city, all I could do was think of all the memories of Louisville and that Sarah was in every single one of them! Needless to say, we didn’t make it very far before we came back and stayed another night.
On Sunday we spent the day with Sarah in her hospital room. We talked a bit with her as she drifted into and out of focus due to a bit of over zealous medication by the nurses. Around 3 PM Chris came in with the girls who had been visiting their Aunt Joanie in Ohio. Immediately she perked up and was her old normal self again for her girls. We soon took her leave and headed back for Indy. As we kissed goodbye, I whispered in her ear that she was my first friend. I wasn’t sure she would remember but at least I had gotten it said. We went home thinking that she would have at least a week or two with Chris and the girls.
The last time I spoke with Sarah was the Monday before she came home for the last time. She was lucid and “normal” (or at least as normal as a person full of medicine to combat brain tumors can be.) I had called her room to hopefully catch Dad or Mom but instead I got Sarah. She immediately asked how I was! Then she said that she appreciated what I had told her as I had left Sunday and that I was her first friend as well. I was stunned that she remembered through the fog of the medicines.
I learned much about Sarah at her wake and funeral, so much that I am beginning to pale in comparison with my sister. She was so much to so many people. To me she was first and foremost a true friend. As we related to friends and family, she could be very hard to live with, she suffered fools poorly. Sarah was infuriated by dishonesty and falsehood. As I said though, if you were an honest fool, she would break her own back attempting to help you.
Sarah was my sister, she was all that a younger sister could be but most of all she was my friend.
K.A.Hughes RA
Tuesday, March 2, 2004 8:30 PM CST
Greetings folks.
Spring is finally creeping in around here. And none too soon! As you can imagine, it has been a long winter for us! This grief thing gets really really old. I wish that I could just bag it up and throw it out. My councilor said to be patient with myself. The first year will be hardest. You will be going along pretty well and then BAM! Out of the blue grief will rear its ugly head. The past few days were pretty good then it hit me so hard last night that I almost couldn’t breath! I simply missed the warmth and feel of Sarah’s body next to mine in bed. Golly there are so many triggers around! Try jogging through a mine field.
It is getting better though. I was able to get some quality time in on a furniture project. The girls put that time to good use too. (In our house, normal is when daddy is building furniture in his basement shop, and the girls are playing and learning in the other half of the basement). Theresa decided to open up a clothing design studio called Fancy Wears. She was the chief designer and Zoe was an employee. For 2 1/2 hours Theresa drew very elaborate fashion designs in her design book, while Zoe took the designs to the factory floor for the other employees to manufacture. Eventually, Zoe decided to open up her own studio next door to Theresa’s. They had a ball! Ingrid kept busy playing with the Playmobile Castle.
Miss T. is really something. A few weeks ago, she opened up the Playmobile Castle box and began in earnest assembling it. She worked for 2 1/2 days, 6 or 7 hours each day putting it together. I helped her only slightly with a few things she did the rest! This castle is quite complicated and has at least 700 parts! her concentration and determination were astounding. This wonderful 7 year-old is going to turn the world on its ear.
I seem to remember someone else with those kinds of qualities..... Sarah...
Thank you everyone. So many of you are praying for our family and we all appreciate it very much. Your prayers lift our spirits.
God bless, and peace
Chris
Sunday, February 29, 2004 8:29 PM CST
Good leap-evening everyone:
As each day passes, our family slowly moves out of the fog of Sarah’s death. The girls are moving out more quickly than myself. In many ways they are teaching me. Zoe says to me “dad! mom’s body is dead, but she is safe in heaven!” Ingrid likes remembering mommy by wearing her stuff. Yesterday she dug out Sarah’s beach towel (mommy’s blee) from the basement and wrapped herself in it for most of the day. Today she found one of Sarah’s favorite sleeping “head rags” and wore it on her head. Theresa draws, writes and does some school teaching to Zoe, (just like Sarah did). In short, they are actively living!
I am finding that my head is clearing so that I can think and plan a little better. I have gone 2 full days without feeling like I have to cry. There will be hard days ahead to be sure, but I know that and therefore I will just let them wash over me. There is simply no way to substitute or ignore the incredibly deep, close and rich love Sarah and I shared. But there is a way to allow all the good of that relationship to flow out of me and into the girls, our family and friends. We made life plans and decisions together (with our family too) that really appealed to each of us. Sarah’s body is no longer here but the appeal of our chosen lifestyle still is. I took on much more of the roll of home schooling our girls about 6 to 7 months ago, during the later part of Sarah’s illness, and I will continue to do it. Creating a good workable schedule for schooling and woodworking and sticking to it is now more important because I am only one.
Sarah’s 15 to 16 year career as an RN has enabled the girls to receive SSI on a monthly basis. Thus reducing the need for me to be out of the home pulling in work. As I mentioned in the last post or two, God is asking me to be patient about building my business. I also feel Sarah saying to me, You put the bread on the table for many years and now I will lighten that load for you (through Social Security). Sarah’s life and work continues to be a blessing for us. Thank you my dear!
Speaking of my dear, I looked at some framed photographs that Sarah put up around our house years ago. The biggest one is a slightly behind-the-back black and white photo of 3 amish women dyeing clothes in a hot concrete tub outside. It occurred to me that Sarah saw herself as the predominate one in the photo. This woman in the photo emanates strength and a powerfully feminine presence. Her hands are strong, the attire is simple, while her virtue and intelligence come right out of the image. You can tell that this woman faces life head on with confidence. Yep! That’s my Sarah!
Thank you all and God bless.
Chris
Wednesday, February 25, 2004 9:15 PM CST
Hello everyone,
Well today is the start of lent. Ash wednesday. It’s when we catholics get a not-at-all subtle reminder on our forehead of the fact that our bodies are really dust and ashes. This fact hit home in me like it never had before. What also struck me profoundly was that we humans are really 2 in 1. Our biological body, and our spirit. And it is through death that our spirit is released. There is no doubt in my mind whatever that Sarah is with Christ. I watched her go. My body was (and still is at times) screaming for her body to be here. Hundreds of times a day I am reminded of the very broad impact she has had on me and our family. But God knows the other 99.9% of the story I am not privy to. So that is why she is with him now and her body is at the Calvary Cemetery. I trust God, and soon enough our whole family will be together again. (I picture Sarah giving me a tour of the new “heavenly” stomping grounds.)
Each passing day or week, a little bit more of the puzzle of our family life seems to come forward. For years I had been thinking about the many ways to significantly increase my woodworking business. Each time I seriously looked into doing it, a little calm voice said to me, not now Chris, this is not the time. A few times I even forced the issue, and NOTHING happened. What did happen was that I always had enough work of various sorts to support the family comfortably. God always provided just what we needed, when we needed it. This happened so often, and in so many wonderful ways that Sarah actually predicted when the work would come in. This freedom from worry helped us concentrate on raising the family. Now I look back and realize how dramatically different and difficult our situation would have been if I “got” what I “wanted” years ago. The girls simply would not have had the father around that they needed so much. I learned my lesson....Trust God.
Today was also a bread making day. And I didn’t even cry. The girls (especially Ingrid) wanted to chip in and help. They really enjoy the activities. But I persuaded them to do other activities while I slopped around gooey dough. I haven't tasted the finished product, but it sure smelled good! Thank you mother-in-law Sue!
I also want to thank you wonderful people who come by and help. Sue, Ralph, Carrington, Joan, Cece, Ruthann, Nikki and Alan, et al. You plus many more are very special to our family.
We love you all
Chris K.
christokk@aol.com
Sunday, February 22, 2004 8:11 PM CST
Good evening all.
One month ago this morning, the most wonderful woman I have ever known passed away.
It is incredibly to think that a month has passed already. Some days seem endless, while a whole week can shoot by with hardly a notice. It feels like something that happens on Star Trek.
Yesterday I decided to start reading some of the love letters Sarah and I sent to each other before we were married. I was living in Seattle while she was here in Louisville. There are probably 3 or 4 dozen of them. I made it to the second letter before I totally lost it, sobbing uncontrollably for 10 minutes or so. Wow! I knew that these letters were very special to us, but I had forgotten how powerfully prophetic and deeply loving they were.
You see, Sarah and I had just been through extremely difficult times in our previous marriages. We were adults in our thirties keenly aware of what we did not want in a marriage. We were also aware of and committed to do what it took to make an extremely good marriage. The foundation being wide open trust and honesty. So these letters are rich and full of the deep desires, future plans and love we had(ve) for each other. Everything was poured out onto those pages. We both felt so firmly that God drew us together after all those years for a very special purpose. In a word, the letters are profound. As I continue the healing process, I will post some of our letter’s contents. They are wonderful windows into an incredible woman and her husband to-be.
Yes, yesterday and today have been “fragile” days. God I miss Sarah so much!! Theresa and Zoe sensed it and made breakfast for us all this morning. Pop tarts and “daddy-O’s”. The girls say “I love you daddy” now much more than a few months ago. They feel the loss too. I spend some time individually with them around bed time. And we just talk about how we are feeling. It helps BOTH of us feel better.
Each day is a new chance to remember the good Sarah put into our lives. And each day offers us the choice to take a step forward into the unknown, or backward into despair. God has placed before my family a dramatically different path through life. And to be honest, it is very scary and not wanted. But being scared is OK, as long as it doesn’t paralyze us into inaction. I choose for our family to take that step into the unknown. We will make it and become stronger people for it. After all, Sarah is still with us and God is the best guide one can have!
Thank you everyone. Your prayers and loving support really do make a difference in our lives.
Peace:
Chris K.
P.S.
Sorry about the lack of new pictures. I tried three separate ways to upload some, but Caringbridge just booted me off line each time. I’ll have to try a different method.
Friday, February 20, 2004 8:33 PM CST
Good evening folks,
Today was sick and whiney girls day! Ingy picked up this diarrhea and puke bug after she got over the runny nose and cough thing, only to give it to Theresa and possibly Zoe. Grandma Sue seems to have it also. I won’t go into details about Ingy’s first night with the bug, but suffice it to say several changes of clothes were involved. (Yuck). I, on the other hand, seem to be unaffected by the bug (so far).
Despite the feelings, the girls were still upbeat enough to seek some interesting schooling topics. Theresa wanted to learn about lake superior. (Her favorite lake). We searched online for related topics and found lots to see. What really piqued her interest was the “Big Mac” bridge. So we found lots of neat information about it. And I think a trip across it would be a nice adjunct to a summer vacation.
Zoebo had a rather germane and “basic” subject. She was interested in... sewer pipes... She wanted to know where all that “stuff” went. So we found all the drains in the house and then went down to the basement to see how they all tied together. I started to go into gravity feed drains, pipe diameters and sewage treatment plants when she stopped me and said, “what would happen if you poked a hole in that big pipe?” Ah kids. Sometimes I forget, she is only 5. body functions are big!
Today I managed to do a few more paperwork-of-death chores while Donna was here. They are hard and emotionally draining. Not only am I grieving, but I must “show proof” of her death by photocopying the death certificates and distribute them. Ugh.
I did feel Sarah’s presence today. I went out for a jog in the afternoon. It was cloudy, windy and misting rain. Her presence came in the form of a sunbeam at just the right moment to remind me to pay attention at a very busy intersection. I’m glad I was warned. I said “thank you my dear,” and continued on my merry way. I pray that throughout my life I can continue to feel her presence in these simple ways.
Finally tonight, I am trying to post new pictures of Sarah and the girls. Wish me luck!
Thank you all from the bottom of my heart!
Wednesday, February 18, 2004 8:30 PM CST
hello everyone,
Today has been a pretty good day. I met with a Hospice (Bridges) person to talk more about the healing process. I basically poured out all the thoughts, feelings and stories since the last time we met. Bill seems to give pretty good advice. He said that the first 6 months is usually the hardest and that the process can take 2 to 4 years. We are all different so it is hard to put a time frame around it. He did mention that when I feel some grief coming up, express it. Holding it back can lead to much stronger waves. Triggers will come up all the time and I may not even know what does it. Grieving is a very natural and necessary process.
The girls are coping appropriately well with this loss of mommy thing. Each one deals with Sarah's loss differently. Miss T. prefers to be alone to cry or write. And she doesn't like to talk about it in the open. Zoe is pretty tender hearted, and she will cry easily when I bring up the subject. Ingrid seems to have it all figured out! She will wake me up at night sometimes and tell me she misses mommy.
The bottom line is that we will have to take it slowly. Grieve a little bit at a time, pray as usual and accept that we will have good days and bad ones.
It is interesting for me in that while I miss Sarah's body tremendously at times, I am also confident that she is quite happy and in a better place. So while I hurt, I feel and know her peace. God can do wonderful things.
With love,
Chris K.
Monday, February 16, 2004 8:32 PM CST
Hello everyone.
Today has been quite a roller coaster for me. Earlier in the day, chef Christo made 6 very good loaves of bread. I say very good because I used Sarah’s recipe and had Sue’s help. The girls loved them.
Making bread was one of those things that Sarah just did with joy in her heart. It was one of the very important ways for her to demonstrate love and and nourish our family. She made several loaves almost every week for nearly 10 years. We continue to live on it. So when I made the bread, the girls felt like life was normalizing. Theresa told me how good it was to be home.
Later on in afternoon, I began to miss Sarah terribly! The simple sacrifice she did for us for all those years really began to sink in. I hurt BIG TIME, and was on my knees in the kitchen crying hard. After a few minutes of this, Ingrid came up to me with a picture and said, “daddy, mommy’s not gone, mommy’s right here.” She pointed to Sarah swinging on a swing set in a park with the three girls. God has one incredible angel with him in heaven. And I am very glad that he has allowed three of them to surround me.
Thank you everyone for your love and prayers.
Chris
Friday, February 13, 2004 7:59 PM CST
The travelers are back.
It felt good to be away for a while. The girls were great and had a blast at the beach. Unfortunately, it rained pretty hard for the last 3 days of our visit. So we shifted our activities to more indoor things. (The naval air museum in Pensacola, Fl. was really neat.) Thanks mom and dad, and uncle Don and Annie for letting us share your lives for a while.
Each evening after I had gotten the girls to bed, I tried to take a long walk along the beach. As it turned out, I only had the opportunity to do it twice. (weather woes). I mentioned in the last update about the first walk. The second walk was similar. I’m not sure what it is about the sea that seems to allow me to uncork and let feelings, words and tears flow. But it happens. I wailed and cried and even fell to my knees at one point. I said in no uncertain terms to the big man: that if he obviously has a plan for me to raise these three incredible daughters without their mother, then he damn well better give me the strength and peace of heart to do it right! Within a few minutes of this grief episode, I felt a strong sense of Sarah saying to me in essence, -- all right, you have had enough crying for one night, go back to the condo and get some rest before you have to get up at 2:00am and drive the girls back home --.
Very early that next morning, after I had packed all the stuff for the trip home, I went over to the pop machine in the condo’s lobby and dropped in 75 cents for a caffeine rich mello yello. One can popped out......then another.......and another......and another! I thought what on earth is going on! About that time the machine goes ka ching, ka ching! And out pops 50 cents in change! This kind of thing doesn’t just happen. Dare I say, Sarah wanted me to be WIDE AWAKE when driving our precious children back home!!
Today I took Zoe and Theresa to the CBC office to visit some friends we made during the many Sarah chemo trips there. It was pleasant but hard for us. Later in the day I got the official certification from the state that Sarah was dead. So it is true, she is now undeniably dead. And it only took the state 3 weeks to tell me that! (trust me! Sarah is laughing at this too!) So for a better part of the day, I have been slogging through the paperwork-of-death.
After messing with that stuff I was feeling pretty sad. Then I remembered that Sarah and I had recorded the girls voices on a small cassette recorder over the past 6 or 7 years. All it was was simple breakfast, lunch or dinner conversations as the girls were learning to speak. We made several tapes and this afternoon I played one for a few minutes. Sarah happened to be calling, “Ingrid, Ingrid, over here.... You’re such a silly baby! I love you!” Tears were coming down my eyes after hearing her voice. But the most wonderful part was when I turned around. Ingrid was standing there and had heard the whole thing! She had a great big smile on her face!
It is incredible how God can take a moment of sorrow and turn it into joy in the blink of an eye.
Thank you everyone. We love you.
Chris
Tuesday, February 10, 2004 3:49 PM CST
Greetings all from Gulf Shores, Alabama.
I am coming to you from the Norton public library so a quick update is in order. (I have a very limited time on the computer).
We left Louisville at about 3:30 am Saturday morning as planned. The girls were VERY excited so they didn't get to sleep until 5:30 am. We said a prayer befor we left for mommy to help us be safe. I can say without a doubt that our 13 hour trip down was the most pleasant, calm, and enjoyable we, as a family, have ever had!! The girls were great! And I know that Sarah was in the seat next to me the whole way.
The weather has been cool here. But that didn't deter the girls. They just put on their coats and enjoyed the beach (barefoot of course!). I've got some great shots of some very excited faces. You see, the girls have never seen the ocean befor.
I am doing pretty well. I took a long walk along the beach last night to do some thinking, praying and talking to Sarah. As usual, tears flowed and many thoughts ran through my brain. One of the most powerful was the thought that I had been so incredibly blessed by God with Sarah's presence in my life! Oh how I miss her! And at the same time, we really had a tremendously powerful and deeply comitted love to God, each other, our family, and our way of raising the children. I got thinking, how many married people are really that blessed to have a marriage like we had. I think very few.
We will be heading back at about 3:30 Thursday am. I will fill you in on the trip details then.
Thank you all.
Please pray for a safe trip.
Chris.
Friday, February 6, 2004 7:47 PM CST
Good evening everyone.
Just a quick note tonight. The girls and I are going to Gulf Shores, Al. in a few hours for a well deserved vacation. I expect that we will be back on the 12th. (weather pending), so I may not get a chance to update till then.
There is great expectation in the air. The girls are bouncing off the walls. They have never seen an ocean beach and are VERY excited. Pray for me that I have a safe and sane trip!
Sarah has left a tremendous legacy in these three beautiful daughters. And at times they can be quite a handful. Whenever I feel a little weak, I just look at them and am awed at the power of God. Sarah said to me many times that I am a wonderful husband and daddy, and a better mother than most moms. I just never expected to have to take her up on that quote. But as we believe, God never gives us more than we can handle. And to those who have been given much, much is expected. I have been blessed by so much in my 41 years. And through God, our family will grow in wonderful, new and unexpected ways.
Thank you everyone. If I get the chance this next week to update I will.
Peace, and long prosperity.
Chris
Wednesday, February 4, 2004 9:04 PM CST
Hi everyone
It has been an interesting couple of days. Zoebo’s 5th birthday was yesterday. Sarah’s mother Sue put on a wonderful dinner and birthday cake meal. While Zoe was excited with the gifts from friends and the cake, we adults were feeling “fragile”, as Sue put it. Everything we did couldn’t change the fact that someone was definitely missing.
Zoe told this to me this morning: “mommy was here last night and she sang me dreamland.” Yesterday morning, I got Ingrid out of bed and she stood in front of the closed bedroom door pointing at it saying, “ Mommy, mommy, mommy’s here, mommy’s here daddy!” We have been praying each evening for mommy to be a good guardian angel for the girls and for her spirit to help guide us through our journey in life.
Sarah and I had planned to go on a vacation to Gulf Shores, Alabama with the girls to see my folks during February. Sarah obviously copped out on the deal, but I am still ready to go. So early Saturday morning, I will take the girls with me to Gulf Shores for some R & R. We will probably come back on the 12th of Feb. (weather pending). Miss T., Zoe and Ingy tried on bathing suits a couple of days back and I almost couldn’t get them to take them off! They are REALLY excited. It will certainly do me some good too!
Overall life is still pretty unsettled for me. I feel Sarah’s presence, but I miss her body. (If that makes any sense.) I run across all kinds of ques during the day that really tug at my heartstrings and bring tears. I played a CD of some music earlier today in my shop. I got the CD for Sarah while we were on our Seattle trip. She really loved it. And it also brought back the trip memories for me. I mentioned to people that our trip out there was the best time I had ever had with anyone in my entire life. Sarah and I knew each other so well that we didn’t feel like we had to do a lot of things, just being in each other’s presence and sharing was enough. What we especially liked was watching the sun set over the lake from a park bench, hand in hand. It’s true what is said about a marriage when a very serious issue raises it’s head, you either grow closer as a couple, or split apart. I didn’t realize it at the time, but Sarah and I were about as close as we could get. Warts and all!
Thank you everyone. I need to mention that my family has received some of the most incredibly touching and heart felt letters and cards that I could ever imagine. Sarah’s compassion and influence has touched so many of you in beautiful and even humorous ways. Thank you so much for sharing your story about her with me. We will treasure those notes.
good night all.
Chris
Monday, February 2, 2004 7:39 PM CST
Hello everyone,
Today was a pretty good day. The girls had a playmate and her mom, Christy, over for a couple of hours. Our basement had just been cleaned and there was plenty of room to run around. Thanks Christy!
I returned to some woodworking today. It felt good to saw and plane! For those of you who don’t know, I work as a professional furniture and cabinet maker. My shop is in the basement of our home and I only use hand tools. I find extreme satisfaction building furniture of all kinds the way the masters did centuries ago. The creative challenge and physicalness of the craft are really special to me. It’s great to be back.
Last evening Theresa wanted me to tell her about when she was very small. I told her a little bit and then put her to bed. Tonight I thought more about it, and dug up her baby birth picture album. It was about 50 pictures that Sarah had organized it in chronological order, from mid pregnancy to 2 or 3 months after birth. Sarah was so incredibly happy to be pregnant. Her face just beamed with pride and satisfaction. In almost every picture you could tell that she just loved this little life within her. I let Theresa know that she and mommy were very deeply connected. And Miss T. said she knew it too. We went through the whole labor process and birth photos, and then I saw something in one picture that I had completely forgotten about. Sarah had reached down and touched Theresa’s head the moment she started to come out. The first human hand to ever touch our beautiful daughter was mommy’s!..... And the last hand mommy touched before she died was Theresa’s.
Thank you everyone. You are loved by us all.
Chris.
Saturday, January 31, 2004 8:05 PM CST
Hello all,
Today was the first day since Sarah left us that I had the girls all to myself. (Sue and Ralph came over for a brief period of time while I went out for a jog). the day seemed extra “heavy”. We did laundry and it was tough changing the sheets from where Sarah had laid. When it came time to change the large pillow case on her favorite king sized pillow, I just couldn’t. Her scent is still with me in that pillow case. An even more powerful scent image hit me when I found one of her favorite “head rags” in my drawer. I picked it up, smelled it and just sat down on the bed and wept. Oh I miss her!
On Thursday morning a grief councilor from the funeral home stopped by for a visit. I filled her in on all the details surrounding Sarah’s death and our mourning. She seemed very pleased with the fact that we are openly embracing and talking about Sarah’s death. Cindy said that our whole culture is geared toward avoiding the pain surrounding death. Children are most often “shielded” or protected from seeing this harsh reality. And adults want to rush through the process and get rid of the “evidence” both internal and external. She said that when you do that, you truncate the healing process or prevent it from even happening in the first place. Children get stuck feeling angry and bitter that a loved one left them, and adults feel lost and often guilty at the loss. Cindy said that it is not uncommon for unresolved grief issues to remain for decades. So, even though it hurts like hell sometimes when we think that mommy is gone, it is best to just wail and let the feelings out. Because eventually, day by day, we will adjust and “the tree will start to fill in the open space.”
Zoebo brought tears to my eyes this evening at bedtime. She sang me “dreamland” by I think Cheryl Crow. Sarah would lay down next to her and sing that nearly every night. I never learned the words, but tonight, Zoe taught me. That song seemed to create a special bond between those two. And this evening, Zoe told me that mommy would hug her and say “you will always be mommy’s baby.”
Good night, and God bless.
Friday, January 30, 2004 9:08 PM CST
Good evening all you wonderful people, this is Chris.
Today has been a good day. I took the girls with me to Jean Hammond’s house this morning while I did some repair work for her. Jean’s 2 girls were off from school so all 5 had a great time. Thanks Jean for the invitation and lunch. It was so nice to get out of the house.
It’s been 8 days since Sarah died. I feel her presence around me so much that I still expect to see her walk out of the bathroom, or pop up from the basement. “Hello my dear”.... I think she would be proud of me today. I traded in my plane for a knife and became Chef Christo. With some help from Sue (mother in law) I made a very nice and tasty chicken and noodle dish with rolls and a salad for 8. You see, Sarah was a phenomenal cook. And for many years I relished her culinary delights. Now that she is gone, I have to come up to speed with the aid of Sarah’s primary teacher Sue, or, settle for average food.....NO WAY!
Tonight, Theresa became fascinated with a science book about things you can find on the sea shore. She had grandma Sue and then later Alan Hoyle read to her. I’m planning on taking a trip to my folks winter home in Gulf Shores, Al. in February, so Miss T. is gearing up. I am always so glad of the commitment Sarah and I made to home school the girls. It is fascinating to feed their minds and then watch their eyes light up when they “get it.” I look forward to picking through the sand with Theresa and a good magnifying glass.
Well, (deep subject) I am getting tired. Hopefully, Ingy’s cold will abate tonight and she will sleep well and long. I’m tremendously grateful to so many of you wonderful folks. My family can literally feel the prayers all of you are pouring our way. Thank you, and God bless you.
Wednesday, January 28, 2004 8:41 PM CST
Greetings all, Chris here
A thought occurred to me today that if the roles were reversed, and I died of cancer, Sarah would continue updating the site as a way of healing from the loss of a spouse. Your comments about Sarah, us and the children have been very uplifting and encouraging for me. Especially when a wave of sad feelings come over me. This morning it was seeing her toothbrush right next to all of ours. Yesterday, it was giving all 3 girls a bath at the same time. (They wanted to). Tomorrow, it will be something else. I will continue to update the site on a regular basis.
I also realized yesterday as I was walking to the Social Security Office that there were literally thousands of things Sarah and I shared, (stories, events, feelings) that now only I know. Funny events, scary things, personality quirks and little ways of demonstrating our love for each other, are all memories instead of current realities. I have often shared the following analogy to people about Sarah and me:
We were like two trees growing very close to each other. As the years went by our trunks got closer together, our branches and roots grew and intermingled. Eventually, we were essentially one large wide spreading tree. The cancer was like this dark force that ripped out one tree from the other. Killing her and severely damaging me.
When I told Deacon Pat at the funeral home of this analogy he said, “you know Chris, eventually the damaged tree fills in the open space as it grows.” What a wise man. As seven of nine would say, “you will adapt!”
The girls are doing remarkably well. I have often questioned having them so informed and close to this cancer thing with Sarah. But it just seemed to be the right thing to do. Even at the moment of her death when they were crying. The way in which they are processing this information is truly inspiring! Jesus was right when he said we should have the faith of children! Mommy’s spirit is no longer here, it is in heaven. Zoe’s evening prayers now ask God for mommy to be a good guardian angel to her. Our precious little ones have been preparing for the possibility of mommy’s death for many months, and the tremendous love and support from me, family and friends is remarkably evident.
Ingy cries for mommy sometimes at night. But as she becomes more awake, she calls for daddy to hold her. She often runs over to some pictures of Sarah and me and says, “mommy! mommy!, mommy’s gone- daddy’s here, let me kiss mommy, let me kiss daddy.” At Sarah’s burial yesterday, the big girls told me they had to wear their poodle skirts Sarah made for them months earlier. They do seem to be adjusting well. But to be sure a childhood grief councilor is coming by tomorrow morning to work with the girls.
Before I forget, I want to let you all know how incredibly humbled I am at the generosity so many of you have shown to my family during this awful time! I have received nearly 100 cards, donations, flowers and baskets of goodies. YOU are a testament to real love. Thank you from the bottom of my heart.
Tomorrow will be another day. A new day. A day of opportunity and a day to grow.
God bless all of you
Chris, Theresa, Zoe and Ingrid
Monday, January 26, 2004 9:24 PM CST
Hi everyone, It is Sarah’s husband Chris again.
As I read all the wonderful and heart felt notes so many of you wrote to me and our family I discovered that several of you were interested in how Sarah and I met. So here goes.
I first met Sarah in 6th grade, (Mrs. Replogle’s class) at North Del Middle School in Royerton, IN. 1974. I liked her because she was bubbly and wore cute wire rimmed glasses. I think most 6th grade boys feel a little weird inside due to many factors in the environment and in the body. I was no exception, and felt inferior to Sarah socially and intellectually. I did however, continue to think about her a lot... OK I had a crush on her! I went as far as to write a steamy (innocent 6th grade boy steamy) letter about being stranded on a desert Island with her. I was much too embarrassed to ever give it to her or even tell her about it so I kept it in a desk at my folks home for decades. You see, we were both nerds. And Sarah told me many years later that, “two nerds going steady would be the social kiss of death.”
The years began to go by and Sarah became more proficient at the flute while I began to excel in sports. I still remember watching her practice with the band in the parking lot of our high school. I never did go out with her then but I did really like her. I just felt too embarrassed and fragile to ask. At the end of our sophomore year, Sarah moved to a different school district with her family. I didn’t see her anymore for many years. I did however know some things about her life because her mother and my mother, then later my sister, worked together in the same doctor’s office. I remember feeling sad one day a few years after high school when I learned that Sarah got married. I had missed my chance.
When I had completed my degree at Ball State, I moved to Seattle. I lived there for about 8 years, marrying in 1991. Suffice it to say that neither relationship worked out. Sarah spent 12 years trying to build a relationship that wasn’t. And I was reeling from the impact of marring a woman with a severe mental disorder.
Then, it happened.....
My sister called me from Indiana one day and said, “do you remember Sarah Hughes?” It took a couple of seconds for the right mental gears to be found but I answered “I sure do!” My sister said that she had just gone through a divorce and was “lonely for a friend”. I fired off a letter the next day. (Feb. 3rd, 1994). I knew completely in my heart that Sarah was the one, and had always been the one for me. I got a 6 page, front and back single spaced hand written letter back about a week or so later. We had finally reconnected after 16 years.
We wrote back and forth and phoned each other for several months. I asked her to come out to Seattle for a visit and she accepted almost instantly. We had a GREAT time. It was incredible to me to be walking down a street, 3000 miles from where I grew up, talking to a beautiful woman about a 6th grade teacher we both had! Sarah also mentioned to me that she kept tabs on my doings over the years and felt sad when she heard that I married in 1991. We both tried in ernest to make our first marriages work, but you just can’t make square pegs fit round holes.
About a week after Sarah’s visit in May of 1994, I proposed to her over the phone. There was this deafening silence for a few seconds (which of course seemed to be an eternity to me!). Then I heard this WOOOSSHHH sound. We both cracked up and laughed uncontrollably for a few minutes. I had proposed to her while she was on the can!!
Sarah agreed and within a few years we had a home and were starting a family. It has always been such a wonderful gift from God to be married to Sarah. We and our families have known each other and enjoyed each other for nearly 30 years. Even though our marriage lasted only a brief 9 1/2 years, our lives were thoroughly mixed and intertwined. We spent 20 to 24 hours of nearly each day together. Sharing, growing, running businesses and raising a family.
Sarah once said to me about a year or two into our marriage that she had spent more time, and much better time with me in two years, than she had in 12 years of her previous marriage.
Oh Sarah, my dear, I love you and will always love you so very much!
Chris K.
Saturday, January 24, 2004 9:34 PM CST
Hello all you most wonderful people.
This is Chris, Sarah’s husband filling you in on her last day. This is so difficult for me but so incredibly important for all you to know about. You see, Sarah died in the way she lived.
Several weeks ago, I mentioned to Sarah one morning that I had a dream of her death. I was right next to her, holding her hand, looking into her face saying, “it’s ok Sarah, you can go now.” It disturbed both of us, but we assured each other that that would not be happening soon. Then, last Sunday morning while I was reading St. Paul in Sarah’s hospital room before 9:30 mass, I had a very stark and powerful image come into my head. Sarah and the girls were all killed in a spring time accident on the highway. It really bothered me! Then I realized something profound about it. If Sarah died soon, then this accident will never happen. I feel so deeply that God gave me a little peek into the future as to why he was calling Sarah home. When I told her this vision story, She and I both agreed that either one of us would gladly give up our lives to save our children if we knew in advance that a tragedy could be avoided.
This vision also got me thinking about just how little control we really do have in life. As Sarah once said a few months ago. We really don’t know when God will call us up. Thank you my dear, I now understand more fully what you were saying then.
On Tuesday evening I brought Sarah home from Baptist East Hospital. Hospice had set her up on a portable dilaudid pump. Did we go directly home after about 10 days in the hospital? NO. Sarah wanted to go shopping at her beloved Meijers store first! We did.
She was so proud of her self for finding a nice pair of sunglasses for only $4.88. Sarah put them in her cart, smiled and turned to me saying “there, now I am happy.” Silly girl!
Wednesday evening Sarah gave my mother, who was staying with us for several days, a hot paraffin wax hand treatment as a thank you for all she had done for us. Sarah’s aphasia had become more pronounce and it became more difficult for her to complete sentences and tasks. When I finally got her into bed that evening, it was within minutes that she began experiencing sharp head pains. A few minutes later, Sarah sat up in bed and began crying. She said, “Chris, I ‘m so sorry for doing this to you again.” I got on my knees in front of her and said “I will be right here with you no matter where we end up.” Within minutes, we moved to the living room couch.
The hours dragged on through the night and the sharp throbbing head pain continued to increase. I called Sarah’s parents and the Hospice nurse and asked them to come over. Decadron IV and ativan did not ease her pain much. Sarah would just cry out “OOOOOHHHH” and clutch her head every minute or two. It hurt soooo bad to see her in so much pain!!! All of us were praying fervently for the pain to ease up. It didn’t. Although Sarah could not talk her actions were very clear. She grasped her mom’s hand and just held it for several minutes.
An hour or two later Sarah had a mild seizure and began very labored breathing. I leaned her against my chest and began patting her back to clear her lungs. It helped and she leaned her head against my neck and held herself very close to me.
By about seven o’clock all the children were up holding mommy’s hand, kissing her and weeping. At about 7:05 Sarah could not breath anymore. I held her hand and talked peacefully directly to her face. She opened her eyes about halfway and looked directly at me and I said, “Sarah you can go now.” She closed her eyes and passed away. A few minutes later I realized that she remembered my dream. Oh God how that hurts so much... I feel like I have had my very heart cut out.
I need a break, I ‘ll be back in a few minutes.
The visitation at the funeral home was beautiful. Many many people came up to me and told me stories about how deeply Sarah touched their lives. Women and men from all walks of life talked of her incredible energy, wit, and true concern for their well being. I am deeply honored by their presence.
The funeral mass at the Cathedral of the Assumption today was truly incredible. Around 500 people showed up including the full choir and Sarah’s evensong group. I felt Sarah’s voice and presence just envelope me during the singing of O manu misterium, her favorite piece. I knew at that moment that she was truly free and with God.
Thank you everyone. May God bless you and may Sarah’s spirit continue to be with you on your journey through life.
Love,
Chris, Sarah’s husband.
Thursday, January 22, 2004 4:01 PM CST
Hello everyone:
This is Chris filling in for Sarah.
Sarah died this morning in the arms of her loving family at 7:05 am....
If there was ever a becon of light that shone more brightly on this earth, I have never seen it. I cannot begin describe the immense depth of love I have had for this incredible woman.
I will be posting later on the details of her life and death. But for now, I will fill you in on the logistics of the funeral, visitations and burial.
Sarah will be presented for viewing at the Highlands Funeral Home at 3331 Taylorsville road, Louisville, KY between 4 and 9 pm on Friday the 23rd.
On Saturday the 24th, we will have a visitation between noon and 2 pm at the Cathedral of the Assumption, Louisville, KY (531 south 5th st.).
The funeral mass will begin at 2 pm at the Cathedral of the Assumption. After the mass, Sarah will be buried at the Calvary Cemetary on 1600 Newburg Rd. Louisville, KY.
If you are interested in sending a donation to our family, contact the funeral home for more information. (502) 451-4420.
Monday, January 19, 2004 8:25 PM CST
Thank you everyone for your incredible support and prayers.
This is Chris tonight.
I just read all the guestbook signin's made over the past few days and all I can say is, GOD PLEASE LISTEN to what all these fabulous people are praying to you for Sarah!!! I am overwhelmed with the love that you are showing for Sarah and us. Tears just pour down my cheeks.
I am going to pick up Sarah tomorrow afternoon and bring her home! Hopefully, tomorrow Sarah will update you!
God bless every one of you a million fold.
Chris
Sunday, January 18, 2004 9:56 PM CST
Hello All,
This note was dictated by Sarah to her friend Linda, who has been serving as typist the last couple of days. Linda had some trouble with the mechanics of the site and sent the same note twice yesterday, the second minus the typos.
From Sarah: I've been feeling much better today, not hitting the pain button nearly as often. The aphasia increases as the day and night go on. Therefore it's hard for me to dictate at night.
Chris and the girls returned from Ohio late this afternoon, I'm not sure the girls were glad to be picked up or not. They had an awful good time at Aunt Joanies's. Thus the old saying, "A good time was had by all."
Plans are in the works to let me go home Tuesday or Wednesday - possibly tomorrow. I'm not sure I'm ready to go home, but I think I am. It makes me a little nervous.
I'm awaiting my friends from evenSong who will sing compline (night prayer).
We'll see what the next weeks hold for us. I still don't feel like I'm dying; but then again, I've never died so I don't know. Maybe I'll be like the Eskimos and say, "This is not a good day to die."
It's incredible how I'll wake up and say what time is it and Chris says Tuesday, and then I realize I’ve just missed a day or two. .... From Linda: at this time Sarah's evenSong friends came in to sing. It was beautiful! Sarah sang too and her voice was clear and in perfect tune. The hospital staff listened outside her door, everyone enjoyed it so much. Sarah and I have had many talks about the joy she has experienced in performing with evenSong. The warmth, friendship, great music and tender camaraderie in evidence tonight, gave me an understanding why it means so much to her.
The most recent crisis was aggravated by the brain tumor activity. At the same time, some of her medications were being titrated down. She started to have increased swelling in her brain, then seizures, then the pain got out of control. The pain meds, Dilantin and a double dose of Decadron has helped to stabilize her again. She has cleared up a lot just since yesterday and had a good day today. When she goes home she'll be on an IV pump and that should hold her a lot better.
Hopefully the phone problem will be resolved by Bell South and Chris will be able to update you the next time. Until then, love and best wishes to all.
Saturday, January 17, 2004 11:03 PM CST
Hello All,
This is Chris filling in for Sarah again. Sorry about the delay. Our phone line has been out. But to fill you in, there has been a serious and very difficult to accept, turn of events, in my wonderful wife's health. Over the past few days it has become clear that medical science cannot do anything more for Sarah. Two of the three tumor spots in Sarah's brain have shown no change in the latest MRI, however the third has increased in size. This one is now causing swelling which has been creating severe shooting headaches. The doctors have told us they can't do anything else but control the pain. We're told she has weeks, not months to live. Hopefully we can get her home Sunday or Monday. When I can be more coherent, I'll fill in some more.
Sarah is generally talkative but slow and a little disoriented. On a good day, I'll take dictation from her and we will keep you informed. You may pray for a miracle, complete removal of the brain and body tumors. We love all of you very much and we will take you through this process with us.
Saturday, January 17, 2004 11:03 PM CST
Hello All,
This is Chris filling in for Sarah again. Sorry about the delay. Our phone line has been out. But to fill you in, there has been a serious and very difficult to accept turn of events in my wonderful wife's health. Over the past few days it has become clear that medical science cannot do anything more for Sarah. Two of the three tumor spots in Sarah's brain have shown no change in the latest MRI, however the third has increased in size. This one is ow causing swelling which has been creating severe shooting headaches. The doctors have told us they can't do anything else but control the pain. We're told she has weeks, not months to live. Hopefully we can get her home Sunday or Monday. When I can be more coherent, I'll fill in some more.
Sarah is generally talkative but slow and a little disoriented. On a good day, I'll take dictation from her and we will keep you informed. You may pray for a miracle, complete removal of the brain and body tumors. We love all of you very much and we will take you through this process with us.
Thursday, January 15, 2004 9:25 PM CST
Hello all:
Chris filling in for Sarah tonight.
Oh were to begin!...
Lets just say it has been a VERY difficult past 5 days!
1) Last Sunday: Sarah is lying on our couch with me rubbing her feet (of course) while I watch the Colts beat the Chiefs. After the game, she tells me that her headach that has been going on all day is getting stronger and sharper. (Weaning off the decadron to fast probably.) Late that night she checked into a unit at the old Methodist Hospital her doctor recommended. She was put on a dilaudid drip and a slow increase of decadron. A CT scan was made of her head and showed that yes there was swelling on her brain around the irradiated tumor site. Sarah’s lower back was hurting also but no scan was done there.
2) On Monday, Sarah was still having head pain when miss T and I came to visit. By Tuesday, there was not a whole lot of change, but a decision was made that she could probably go home on a pca pump by Wednesday if there was no significant change. That Tuesday evening I was informed that Sarah had a 2 seizures and it would be best to get her over to Baptist East where the cancer unit could do more for her medical needs than the pain place. It just so happened that a blood check of her dilantin level was 4. (It should be about 11 to be theraputic enough to prevent seizures!) I think someone dropped the ball and missed giving her enough medication!
-side note: I was not a very happy camper during this time period.
3) Wednesday through tonight: Sarah has had an enhanced MRI done of her head that shows a spot of damage causing swelling. The CT scan done of her chest, abdomen, and pelvis shows significant upward change in size of the left adrenal gland metastisis and some upward change in size to the orginal abdominal node mass. (These changes are not unexpected because Sarah is not on any cancer meds at the moment.) On the plus side, there was no mention of bone metastisis, and her liver appears unchanged. So her low back pain is probably caused by some existing stuff growing.
Now the doctors are just trying to get the brain swelling and sharp head pain back under control so that Sarah can get relief and come home. The next step after that will be Nashville.
As you can imagine, this has been very stressful for all of us. I keep the girls apprised of how serious the situation is and that mommy could die if the swelling cannot be controlled. None of us want to lose her, and we are asking for specific prayers for reduced brain swelling and pain. And it would also be nice to pray for the cancer to DIE!
Thank you everyone. I feel pretty spent and will go to bed. We feel your love and comfort and help so much. Life would be much more difficult without all of you.
Peace.
Chris
Monday, January 12, 2004 9:26 PM CST
Hello everyone,
Chris filling in for Sarah tonight.
Sarah is in the hospital tonight. The swelling around the larger brain tumor was causing very severe head pain. The cause for the pain seems to be two fold. First, she has been slowly weaning off the Decadron (steroid) which controls swelling because the thought is that as the irradiated tissue heals, swelling decreases. And second, she slipped on Ingrid's "bwee" (blanket) and rammed her head into the patio door frame. OUCH! This may have caused the fragile tissue around the irradiated spot to swell again. The brain scan done this morning showed as much.
I came back from the hospital a little while ago and her pain was under much better control. (All hail the dilaudid drip!) It seems likely that she will be back home tomorrow or the next day.
Please continue the swelling reduction/cancer destruction prayers. This cancer crap is getting really old.
Love to you all.
Chris K.
Friday, January 9, 2004 11:23 PM CST
Ah it is Friday. Chris is in Nazareth (to those of you outside KY, this is not as in Israel but as in Bardstown KY) at a convent having a private retreat weekend. I did this for him last year and again this year. He is an introvert and really needs time away to recharge. Compared to so many average men he is handling this so amazingly well but knowing him, I know he needs this time away. I pray he relaxes and has a good time.
While he is gone, my helper at home is his sister, Joanie and her daughter, Heidi. They are great fun and the girls love them to death. Aunt Joanie is the source of all sorts of great activities and food and Heidi is so good with the girls. Last time they stayed here (during our trip to Seattle) I guess Ingrid just latched onto Heidi and was "hers" the whole time. They arrived tonight just as I was putting Ingie to bed and bathing the big girls. It was a bit busy but I think it will set the stage for a better tomorrow the fact that I let them stay up to see them come in.
We have tickets to see Peter and the Wolf in the morning. That should be nice for them. After that we are probably going to eat at that famous emporium, Cracker Barrel, where my girls always enjoy the most low carb meal there is.... pancakes! ha ha. They just love CB though, so it will be great fun. Afterward, I will probably go crash with Inga at Grandma and Grandpa's while the troops go on to play at Toys R Us or some such thing.
The pain is better today. I am going to try the neurontin 3x daily now and see if that is helpful. Gradually I have had a better day each day this week. Thank you for prayers and well wishes, everyone. I can not wait to be off the decadron soon. I began 2x daily doses today. Hoooooray.
Tuesday, January 6, 2004 8:42 PM CST
Good day, bad day, good day, bad day....yadda yadda yadda.
I spent most of yesterday on the couch, minimally functional and in much pain. Since my most recent discharge there has not been a pain free day. The best I have gotten are a couple of days where my pain level was about 3-4ish on a 10pt scale. Constant, significant pain is so very wearying, it's right up there with nausea.
The oxycontin seems to be of no help. The location of the pain is new (low sacral, very low back) and not really of the character of the "cancer" pain I have had in the past. It is puzzling and frustrating.
Dr K and my Mom and I discussed my current status in depth today. I really appreciate having him as my physician. He is very caring, involved and really listens when you talk. We made some plans to work on getting pain control as well as some family issues worked on. For now I am going to try Neurontin as an adjunct to my pain meds and continue to wean off the Dasturdly Decadron (steroid)--ah to sleep perchance to dream.
I am feeling better about having a plan. The pain is still there but I am feeling like I am doing something concrete about it now.
Sunday, January 4, 2004 10:22 PM CST
Yes, it's ME! Coming out from under the dilatin fog, I am reveling in my wonderful feeling of being conscious and present. I have not felt this awake or alive in ages. Please keep praying for seizure free existence. It scares me a little but not enough to take more dilatin right now.
My overall body pain of the past few days is much better also. Let's just leave it at this--a year and a half ago I nearly died of a ruptured bowel obstruction. I think I was headed that direction once again until yesterday also. I feel like "Raymond" in those Phillips commercials. :)
I missed the evenSong concert last night. I hope it went well. If the pain I am experiencing and the dizziness get under control, I hope to sing with them at their next concert at the Episcopal Cathedral. I miss singing with them.
I am also looking forward to more than 2 hours of sleep per night. As I wean off the decadron I should sleep better. The only sad thing? My home will probably get cluttered once again. The constant thrum of energy running through me has got me straightening EVERYthing it seems. For several mornings I would clean the big girls bedroom all over, before family breakfast. (I say "family" breakfast because I had already been awake and up since 3:30am--including eating breakfast).
We took down the tree today and in the process discovered a few unopened presents. Woo hoo.
I feel SO MUCH better than last night.
Saturday, January 3, 2004 8:43 PM CST
Good evening everyone, Chris taking dictation for Sarah tonight.
Yes I can type, but I am too tired to sit up right now. Based on symptoms, I am probably approaching dilantin toxicity. For example, the room spins whether I am moving or not. Especially when I sit upright. I list to one side or the other and generally walk like someone who is drunk. When I spoke to the doctor on call tonight he said, "good golly why are you still on so much dilantin!", and gave me directions for cutting down my dosage. So we are all hoping for a more alert day tomorrow.
It saddens me a lot to see the realization in my daughters eyes as to what is going on with me. Theresa is especially aware of this. I need to stop recounting the siezure episodes in ther presence. I can't imagine going through what they are going through. We are hoping to get started in family therapy soon. Anyone with the name of a good family therapist please e-mail or phone us privately.
I am trying hard not to call in mom and dad over the weekends so that they can get a "break". (As if they could forget that their daughter has cancer.)
I feel like I need to say this, I am probably, physically speaking, better than I have been in a long time. My prognosis is still very good and most of the physical things I am undergoing are not that difficult. However, emotionally speaking, I am sad and tired and worn out from doing what I perceive as nothing. I will be so glad when I can get more than 3 hours of sleep a night! I hope this goes a long way toward improvement in my sanity.
I am so happy to receive all the cards and letters and expressions of support to my family. Today someone sent me a book of stamps in their card and for some reason that really touched me that someone would think about making sure that our mail went out. I can't fathom the number of people thinking and praying for us. Thank you everyone!
Monday, December 29, 2003 10:17 PM CST
Wow two posts in two days. Back to the pain grind. I keep taking the medications and they work sometimes and sometimes not. No one can say for sure why I am having lower abdominal and sacral pain. I know though, if I just sat/laid around I would never get anything done.
My mom and I took a marathon trip to Meijer and it sure took its toll. But, you know sometimes YOU have to be the person doing the shopping. Otherwise there are all sorts of things missing.
I have only a few exchanges to make at a couple of stores so perhaps Mom and I can do them before my last radiation treatment tomorrow. It's hard to believe that I will be done so soon. Believe me, I am not complaining. I now have a weaning schedule for the decadron yay. Perhaps I can begin sleeping again.
I would like to ask for some specific targeted prayers; first, I would like to ask for complete resolution of the brain lesions (as in no scar tissue which would require continued dilatin use) and second, of course, the complete cure of the cancer.
This is all such uncharted territory for me and my family. Much thanks to all of you who continue to lift us up in prayer and support in all sorts of ways.
Sunday, December 28, 2003 9:35 PM CST
Yes, it's ME! I am tempted to leave in all the typos but I won't. It's gotta be legible.
Gradually I feel a little bit better each day. I am becoming aware of my "up" times and my more drunk or down times. The past 4 nights I have cried, wanting so much to be on a dilaudid PCA drip (patient controlled analgesia). It is the only thing that completely took care of my pain. Of course I could not be at home and do that, damnit. Then I go into my guilt trip about the massive amounts of narcotics I am now taking. Yeah yeah yeah I know, take what I need, I am not an addict, yadda yadda yadda. Still when am downing over 100mg of oxycontin every 8 hours (it is normally given every 12 hrs) and still needing significantly MORE breakthrough medication in addition to that just to function, it is disheartening.
We had a delightful visit from Zoe's godfather, Wayne, this evening. In addition to other things, Wayne works around substance abuse. Chris and I have been theorizing that something in my drug soup has accounted for my rather rapid increase in need for narcotics. He confirmed that the dilatin does, in fact, relate to this. Yay, at least there is SOME reason besides dramatic increase in pain. (in other words the dilatin I must take to control seizures decreases the effectivess of the narcotics). I have had hard time accepting that there has been THAT much of an increase in pain due to cancer. The location of the pain is also unusual. (lower sacral/low pelvis region). So, please pray that I can get off dilantin ASAP.
People have been overwhelming in their generosity and love shown to our family. The constant stream of emails, calls, visitors, etc has really helped to keep my spirits up. It helps me to be more positive with the girls and Chris when I feel like am a part of life going on. Thanks to EVERYone who prays, helps, gives, etc... to our family. It is so incredibly overwhelming.
I am also so very very happy to have the dexterity back in my right hand and the aphasia fading from my brain. Interesting side effect of my aphasia has been that Zoe is beginning to read. She has memorized so much of Curious George that she now prompts me if I have blank moments.
I will post more about my fears, experiences and thoughts on having seizures on another day. Pray that you never ever ever have to experience one (either in yourself or a loved one--very scary).
God bless us all in this holy season. I love you all.
Saturday, December 27, 2003 8:49 PM CST
Chris is taking dictation from Sarah tonight.
Each day gets a little better at home although I'm taking far more oxycontin than I wish I was. Everyone keeps saying don't worry about the amount, just take enough to be comfortable. It is much easier to say it than to live it.
The girls have been a bit whinny and difficult these past few days. The whole lack of a routine has taken their toll. Chris took the two older ones on a forced march while Ingrid and I took a nap. Towards the last half hour I was resting Chris' mom called and we had a nice conversation on what has been going on.
I feel like a Dickensonian character. Every time I close my eyes or pick up the phone, there is portent of a new guest or conversation waiting. We've had some nice impromptu guests and little by little, things are feeling more normal.
I sure will be glad when I can start back on chemo treatment for the cancer. The groin nodes have begun growing again. It's frustrating, as Chris has pointed out, to be in possession of a bag full of medicine proven to work that I am not supposed to take right now. Please pray that I wean off the steroids quickly! Please also pray that any residual in my brain is gone and that I will not be stuck on dilantin for the rest of my life. Tommorow we will try to tackle church.
Good night.
Wednesday, December 24, 2003 8:43 PM CST
Greetings all you wonderful people.
Christmas is finally upon us. And what a Christmas season it is! God is so good to all of us. We must never forget that we have been gifted for eternity through Jesus. (Kids do not have a lock on Christmas joy!)
I am extremely grateful this day for the gift of my wife. Sarah is without a doubt my lifelong soulmate. Our lives have been intertwined in one way or another since we were kids. It was never a stretch to think about marrying her and raising children. God put us together at the right time, and in the right way. He again is opening up a new pathway for us to grow.
This battle against cancer is not only a battle against a disease, but a battle to give in and trust Jesus. It is easy to trust him when all the chips are falling our way. It requires a great deal more faith to do so when looking at a life threatening situation. It is these situations, I believe, that God comes closest to us; and his peace and healing are most powerfully felt.
Sarah and I are blessed by so much and so many of you. We feel very hopeful and peacefully confident that this cancer thing is just a temporary path to growing even richer in Christ's love.
Thank you everyone. This is truly a very special day.
Love, Chris K.
Tuesday, December 23, 2003 7:51 PM CST
Good evening all, Chris taking dictation again.
I almost felt normal for a little while this afternoon. I don't appreciate the comments about "a new normal", I don't know what that means. And I keep having to adjust every day. The biopsy results are fine, there is nothing new to say, no new kind of cancer. I have been siezure free for over 48hrs and that is an enormous blessing. I've been warned though that the side effects of dilantin at a theraputic level are a blunted affect, tiredness.. you name it, I've got it. Please pray that I can live with and eventually get rid of this drug. We put up the Christmas tree today! Ingrid was very excited to see it when she got up from the nap. It is nice to have at least a modicum of decoration in the house. The big girls helped decorate it all.
Once again the secret santa's have overwhelmed us. Christmas morning will be quite an event. (I'm not even sure that we will open all the gifts Christmas morning.) Please know each and everyone of you are so thanked... You are priceless!
Monday, December 22, 2003 7:32 PM CST
Hi everyone, Chris taking dictation for Sarah tonight.
Well Chris and kids are back from the weekend in Muncie. This has been an eventful weekend! This is the first day since Sunday that I have not had a seizure. I have scared plenty of people (including myself) and I don't want to do that any more! It is without a doubt the most terrifying experience I have ever had! I was hoping to get the tree up today but perhaps tomorrow. Things are all rearranged prioritywise. I still don't think that I am not going to get well, I just wished someone would have warned me about the very real possibility of seizures! I am very anxious about having one in front of the children. Hopefully my dilantin level is up high enough now so that won't be an issue.
It's hard not to relax and let the Christmas season happen. It's all I can do. I am very proud of my husband and children who made the long trek up to Muncie and enjoyed themselves. 5 more radiations to go, every day but Christmas and the weekend. They must be pouring a lot of radiation in there and it just leaves me wiped out.
Thank you also mom's friend Donna for putting up the kids and my husband.
Sunday, December 21, 2003 7:20 PM CST
Hi everyone, it's Chris tonight.
Sarah is feeling bad and very tired tonight. She has had a total of 4 seizures since last Thursday morning. None quite as strong as the first one, but each one is still terrifying and very physically draining. The latest one happened about 4:30 pm today. The doctors are trying to get the dylantin dosage dialed in so that these damn things won't happen anymore! (excuse my french)
Hopefully tonight the dosage is correct and she can begin feeling better. Sarah is sleeping at her folks place tonight just in case she needs to go to the hospital.
This radiation thingy is really hard to deal with. On one hand, the oncologists feel pretty confident they can wipe out the spots in Sarah's brain; and on the other hand, the wiping out process has terrible side effects! (like headache, nausea and siezures). Tomorrow afternoon is rad. treatment number 8. She is over half way through. I think focused prayers for no more seizures is very important right now.
Thank you all.
Chris
Thursday, December 18, 2003 5:29 PM CST
Hi everyone:
--Chris taking dictation for Sarah--
Today is a day that will live in infamy and we never want to repeat it again! I've been restless because of the steroids, however this morning became the mother-of-all-episodes, so I thought. About 5 am, my face began twitching and before I knew it I was in a full grand mal seizure!! I tried to alert Chris but my voice quickly changed into an unintelligible sound. Luckily, Chris awaked quickly, correctly assessed the situation and protected me from further harm. I woke up 10 to 15 minutes later with paramedics asking me a million questions. Without a doubt, it was the scariest thing I have ever experienced! I'm sure Chris agrees. (Yes I do!). Throughout the day I became well aquainted with Dilantin and we made it through the day. If it isn't one thing, it is another.
I am once again humbled and amazed at my incredible husband and family for taking care of me. I plan on recouperating at my parents place here in Louisville while Chris takes the kids up to the K-family christmas gathering.
Thank you all, with love
Sarah.
Monday, December 15, 2003 8:25 PM CST
Hello everyone, dictation again by Chris from Sarah...
There is nothing to equal the joy of a young child's birthday! 7 amazing years have passed since miss Theresa Grace entered our lives and we are much richer for it. My one and only career aspiration has been to be a mother and I am so glad to be one.
It has been a very busy and tiring day today. Just the physical act of eating wears me out. Couple that with 80mg of Oxycontin administered every 8 hours, and you have one stoned and exhausted parent! Mom did all the preparations and cooking of dinner thank heavens. The girls all enjoyed their presents. We hope to get some online photo's to share with you soon.
I met a man awaiting his first brain radiation today. We had the same affectations (usless right hand, slightly asymetrical smile and frustration with limited mobility). I felt like the old pro having done this radiation thing before. I'll be glad when this series of treatments is over. It involves wearing a tight, stiff mesh mask over my entire face. As they put it on your face they say, "You're not claustrophobic are ya!" Once a week I have to keep the mask on a little longer for extra measurements and today was the day. "God grant me the strength to accept the things I cannot change..."
Tomorrow is another day... I should go to bed.
Sunday, December 14, 2003 9:25 PM CST
Hello everyone. It's me Chris. Tonight Sarah is back so I will take dictation!
Here goes.
This afternoon I received a much desired massage (free service) for 5 north cancer patients and was sent home by 3:30 pm. However, dad and I had to go get some perscriptions so we really made it home by dinner time. (I personally would have loved to stay at the expensive hotel with the bad food where they pump you full of daludid) but I am happier to be home. And I know the family is happier too.
Nothing is back on the biopsy. I feel I must edit some commentary. Based on what we know, I have colon cancer with metastises to the liver, lungs and most recently the brain. The largest lesion is about 2 cm. The other 2 lesions are less than 1 mm. not 1 cm.
The MRI brain scan from Wednesday was impressive because of the amout of edema (swelling). The swelling on my brain was what caused the unremitting worsening headaches. After several days of steroids, I am now headache free and will remain on steroids until after my radiation is completed. (brain radiation causes a known amount of swelling therefore steriods will be continued.) So far all the Radiation Oncologists are very comfortable saying that the radiation should wipe out these metastasies.
If not, another course of radiation will be ordered later.
I am thinking and speaking more lucidly than I have in days. (better living through pharmacology!)
It's a lot to take in right now and I am not sure what to say. Thank you all for your continued prayers. Your notes in the guest book mean the world to me. Please pass along to anyone you want. I'm still not dying of this cancer, however it's getting a bit tedious! Maybe more another night. Theresa's 7th birthday is tomorrow night and that was my goal to get home by.
A special love to my family for helping me out.
Friday, December 12, 2003 7:32 PM CST
Hello all:
It's Chris again with an update on Sarah.
She is doing better today. The groin lymph node excision and biopsy happened at 6 am or so this morning! It was pretty quick. Now we get to wait a few days to get the results. (I would love for this baby to come back as non-cancerous)! When you get a mixed bag of results on the blood chemistries done just last week, it is hard to know. Pray for the node biopsy to be normal.
Sarah's headach from the 3 tumors is gone. The swelling continues to subside. She had her second radiation treatment this afternoon also. She is scheduled for 11 more rad. treatments once per day. (Monday through Friday on; Saturday and Sunday off.) Time for them is 3:30 EST. Pray that these are effective at killing all the tumor material.
Her neuropathy is still there, and it is very frustrating and frightening to her. It is tough to not be able to use your right hand. I visited this morning and talked again this evening by phone. I can tell there was an improvement in speech. It's possible she will get to come home Saturday.
The girls and I did pretty well today. Ruthann came by and helped us out. We visited mommy in the hospital and had lunch with her. We all appreciated seeing her. Especially Zoe.
Thank you everyone so much for your support! It is great to feel so much love from so many.
We love you all.
Chris, Sarah and the girls.
Wednesday, December 10, 2003 9:11 PM CST
Hello everyone. It’s Chris filling in for Sarah tonight.
This has been a particularly bad day. Sarah was given a head CAT scan because the headaches she has had over the last week were not subsiding very easily. The scan showed (for lack of a better term) that she has brain cancer.....Three spots, 2.5 cm, 1.1 cm and a smaller one. Currently she is at Baptist East hospital getting a steroid compound to quickly reduce the swelling, and the much celebrated dilaudid (sp) I.V. pain medicine. Focused beam radiation will start tomorrow am.
What INCREDIBLY CRAPPY news this is!!
I will fill you in on what has transpired since we got the results of last weeks mid-torso PET and CAT scans.
The scans have shown a mixed bag of results. The large lesion in Sarah’s abdominal region is dying and regressing. The spots in her liver are now gone except for one small one, and it is shrinking also. YEA!!! The other news is that the PET scan has shown “hot spots” in the following: an enlarged groin lymph node, right armpit lymph node, a couple of nodes around the sternum, and spot on her left adrenal gland.
Tomorrow, the plan is to remove the large groin node and biopsy it. The surgeon may also remove a couple of nodes in the armpit. Sarah feels that if it is "hot" and easily accessible, cut it out! I can’t blame her! Dr. Kommer and Dr. Burris are not calling these hot spots cancer yet because they are not really certain. Hence the biopsy. It seems that the blood chemistries are showing a fairly stable if not declining CEA and improving liver function. this seems odd and puzzling. One would expect to see the CEA go up dramatically if all these spots were cancer. Also why would some spots be shrinking while others be growing. A possible answer is that Sarah has 2 or more kinds of cancer. OH JOY!!!
My loving wife has to be special ya know!
-Lets see if I can put a positive spin on this-
If the brain cancer can be blasted and wiped out with radiation (the doctors feel confident this can be so); and the nodes are excised, biopsied and shown to be not cancerous, it seems then that things are really going pretty well!
No, I am not in denial. I just have this deep sense of peace about this whole cancer thing. It is hard to explain, but I just feel that God has his arms around Sarah and the rest of us. He has a very special purpose for her and that she (we) do not need to be afraid. I do not know the outcome. Eventually though, we all reach our end and discover that our bodies were just a temporary residence for an eternal spirit.
Thank you everyone sooo much for your prayers, support and comfort. Each one of you is truly an angel. Your love has helped create the sense of peace in my family.
I will keep you updated over the next few days on "special" Sarah.
Friday, December 5, 2003 8:47 PM CST
It's Chris writing again. I am taking dictation from Sarah. Here goes.
Finally done with all my scans this week. It takes a big physical and emotional toll on me I found out. I am so glad to have my mom and Chris with me to maintain some semblence of normalcy with the girls because I sure don't feel normal. The neuropathy continues and has me feeling frustrated. I have strength but almost no dexterity in my right hand. It moves like on a delay.
My ANC (infection fighting part of my blood) was 600 this week. Therefore I have not been out much at all.
On top of everything one of my fillings fell out ARG!! Please pray for my sanity and that of my family. I so very much want to be well and done with this! Apparently though, God has me on the greater-than-one-year-plan as far as getting well is concerned.
Those of you who are awaiting some form of written communication it may be a while.
Thanks and love to you all. (Especially my husband who wrote this for me!)
Thursday, December 4, 2003 9:00 PM CST
Hello all, this is Chris.
Sarah had a PET scan today and soon we will know the results. This type of scan indicates active tumor growth by showing up black, while inactive areas are lighter shades of gray. Sarah gets to have a CAT scan tomorrow (complete with 900 cc of yucky tasting barium). The information from both scans is gathered together for a meeting with the doctors on Monday (local) and Tuesday (in Nashville). Your prayers for death to tumor cells is much appreciated.
Speaking of appreciation, thank you Mother-in-law Sue for your tremendous help lately. Our family is truly blessed to have you and Ralph so close. Thank you also for you who read this site so often. The prayers you give really do lift us up, give us comfort, and reinforce our determination to see this gunk wiped out!
God bless you all.
Wednesday, December 3, 2003 7:49 PM CST
A short frustrating note. The neuropathy seems to affect my right hand quite a bit and makes writing nearly impossible and typing very difficult. I shall dictate to Chris if needed. Please pray this is very short lived. It is scary and very bothersome. This note alone took nearly 5 minutes and numerous corrections to write.
Saturday, November 29, 2003 9:28 PM CST
Yes, I am feeling much better. I have had a fair amount of neuropathy in my hands and that combined with sever splits on my fingertips makes typing difficult.
My mom and I talked at length about my problems on Tuesday. We are going to have her here a few days a week so I can concentrate on doing life and healing rather than on feeling overwhelmed and sick. I know my lower blood count adds to my feelings but I also know it was just not only a blood problem. I may switch antidepressants also.
The girls are growing at such a rapid rate. They just amaze me. Theresa and I are sharing the Chronicles of Narnia in the evenings and they generate such interesting conversations. She continues to lead us into all sorts of educational ventures we had never thought of. Zoe is reading but keeping it a big secret. I think she wants to stay a baby a while longer. She is recognizing short words and letters. Now if we could just get her to figure out how to put on her clothing forwards.
The girls are fascinated of late with Chris's tales from his many cross country bike solo tours. Every night he has been putting them to bed with stories of his trips. It's neat to see them so excited about his stories and adventures.
Inga is a hoot. She is so so busy and into everything. I feel like our entire household is at waist level to prevent her from getting into it. She now gets on chairs to reach things. When we get her down or say no, she now says, "AH, no fair!!" She awakens up early and talks loudly. Most mornings she and Zobo play together in Inga's room until one of us big people comes and rescues her from the cage. I hope and pray Ing stays in a baby bed until she is 3.
Speaking of birthdays...the birthday and holiday season is upon us! Theresa is now counting the days until her birthday, Calgon take me away!
Tuesday, November 25, 2003 9:10 PM CST
Today was one of those days when the enormity of my experience really hit home. I was at my usual weekly visit with the oncologist for a blood count and procrit shot. I realized I have been going to a doctor's office essentially weekly for over a year! I have had blood tests no less frequently than than every 2 wks and have seen a doctor at least monthly. Sheesh I am so worn OUT! Sick of being sick.
Mom and talked and I cried some about my situation and my desire to do "stuff" but feeling so worn out by everything. I literally dread most days. Getting up is a challenge, facing 12-15 hours of daytime activities and the often insurmountable mountain of dinner preparation are daunting propositions. I really really don't want to feel this way. I want to just be normal--busy with lots of non-necessary activities and trips rather than busy wondering if I will get an infection from Meijers or if I am depressed due to low blood count or due to depression. Sound depressing to read? Well it's more depressing to feel it.
I am going to get well but I don't think it will be overnight. However I am not at all opposed to getting well overnight. Taking chemotherapy for more than a year continuously is not fun or the stuff of healthy living. It is necessary for tumor killing, though. Sigh. Ugh.
I could use a lot of genuine encouragement--please no email cards-they are more effort than they are worth to load up..... an email note or a real note is fine. A short visit or after 7pm phone call or an IM conversation would be ok also. Please don't tell me to "hang in there" or offer "anything you want, just let me know..." (Yes, you are welcome to do concrete things, just please don't make me responsible for asking.) Just normal every day talk is fine with me. Heck I don't even mind hearing someone ELSE'S problems.
Tomorrow is another day. Let it be a happier one.
Monday, November 24, 2003 9:55 PM CST
Time flies. Sorry I have not been here sooner to update. It has been a rough several days since Wednesday. Mom came and helped out Thursday and Friday, thank God. I was pretty incapacitated for a while there. Pain is so hard. I was very very close Wednesday night to going to Baptist East and checking in for pain control. IV meds were really calling to me but I knew the orchestration of a night time trip to the ER would be a big problem. Finally relief came. However the price was being stoned most of my waking hours and various hallucinations, etc. I am such a source of entertainment.
Saturday Theresa and I went my friend Julie's home to get some hands-on knitting pointers. It was such a wonderful trip out to the woods where they live. They are so relaxed and welcoming. I think now I can tackle a project. I am blessed with so very many friends from all walks of life.
I am fighting a bothersome feeling of depression, I think. I feel there are so many things to be done and I am doing nothing about doing them. These "things" range from simple to complex and for the most part are doable--just not all at once. Whenever I have a day where I nap long or like today, I never get out of my jammies... I feel so worthless. For the most part I really don't feel the way I think a stage 4 cancer patient should feel. I do, however, feel very much like a chemotherapy victim on frequent occasions. This chemo causes a lot of skin type problems like the cracks on my fingers and corners of my mouth (makes a lovely picture when lipstick pools at these locations). My mouth is very tender and bright red and extremely sensitive to everything. Eating takes a long time and hurts. I often just give up and stop eating.
The neuropathy is back. A new development is charley horses in my calves if I sit too long. I also get them on the soles of my feet occasionally. I can still write but it feels wierd (typing is easier). I keep my nails very short so that combined with neuropathy keeps me less than dextrous.
My CEA...came back at 5.8. Phooey. It is hard to view that as anything but a setback. However, the doctors are relatively unconcerned. They aren't the ones with cancer. I want it back at 2 and NOW, please. Cancerwise, I feel good. The majority of my problems stem from the chemo I must take to be well.
Lord God, forgive me for my ranting. I am just wanting to be normal for a while.
Wednesday, November 19, 2003 8:38 PM CST
Hello everyone. It's Chris filling in for Sarah today. She is laid up on the couch right now with constant severe back pain which began around 5 pm.
Yesterday Sarah and I went to Nashville for treatment number 6. She got the standard 175mg/M2 Taxol dose over 3 hours instead of the hoped for 225mg/M2. We both got to talk extensively with Dr. Burris and Jan, the Nurse Practitioner about dosages, side effects, toxicity and neuropathy. They understood that the CEA number going up a little bit last round concerned us. Dr. Burris said that the CEA test is "not that good" and that fluxuations are not at all necessarily worrisome. They do have an indicative value. The value he brought up to us was the fact that the liver alkaline phosphotase levels continued to decline even through the last cycle when the CEA went up. (Lower levels in the liver are a good thing!) Dr. Burris also mentioned that he has a patient who has a CEA of 20,000! Sarah's was 4.4.
The treatment administration went very well this time. Sarah had the infusion nice and easy over 3 hours with no adverse effects. I believe that it was my stellar bedside manner that made this possible! HA!
The CEA number did not make it back from the lab befor we left for home. And as of today (Wed.) the results were still not in. Some equipment breakdowns apparently.
Thank you everyone!
Your regular host will charm you with her wit soon!
Love
Chris.
Thursday, November 13, 2003 12:43 AM CST
Another beautiful fall day. The front has come through and now yesterday's high of near 70 was a memory as we donned our cold weather stuff to go to the library this morning. Brrr.
Our library is so neat. There are two children's librarians, Mr Matt and Ms Anne who do SO much to make story time a very special event. This month they are having "community helpers" come to visit. Last week was the local Okolona Fire Dept (a nationally recognized fire department). This week was the Louisville Mounted Police. My girls were so excited. They were right up in the front asking questions and ready to pet Smokey and Oliver. Their interest in horses has been fueled by the recent finding of my old Breyer model horse collection. I only have 12 remaining of my former herd of 30+. They get them all out and trot all over the basement with their talking horse troop. It's nice to see them enjoyed by another generation.
Our friend, Miss Donna, came and took the girls to see "Brother Bear" yesterday. They really enjoyed it and regaled us with long and detailed descriptions of the movie last night during dinner. When Theresa is very excited she does this sort of stutter of the ends of words. Makes for a VERY long story, big sigh...
I was treated to a fabulous massage by Donna, who is a trained massage therapist. She needs to go into business doing that. She is the first person to actually use enough pressure to please me in a neck/shoulder rub. Thanks Donna.
Last night I was also treated to another surprise. I was looking for some winter things for the girls in our boxes of clothing. I came upon a box of mine and found a pair of jeans I had not worn since just after Theresa was born. Not only do they fit, they are not even tight!!! There are precious few good things about this cancer experience but this is one--being able to wear some things I figured I would never wear again. Believe me, I don't recommend my "diet plan" of chemo, radiation, chemo, lots of narcotics and now periodic episodes of random vomiting. It ain't worth it.
Well for having nothing to say, I sure filled the page. I'll try and find some fun pictures and post them soon.
Tuesday, November 11, 2003 9:43 PM CST
A quick note/progress report.
I am uninteresting and unremarkable. Ok, not completely unremarkable but certainly much less so than in previous months. My blood count is staying stable this week and last. NO PROCRIT!!! Woo hooo. My white count is nice also, low normal but not dangerous and higher than last week. My body seems to be working nicely for now.
I am considering asking for a slightly higher taxol dose and seeing if they will grant my request. This next dose, on the 18th will be my last for awhile if my scans are good. I will remain on the study drug for as long as it benefits me. My next scans will be in the next month. I will probably get a new PET scan then also. There is a potential that I may get more Taxol now but not until they check my status. Also, if, while on the study drug only, I progress, I can get more Taxol.
Chris hopes to be my chauffer this Tuesday. That is pending the finding of an additional child care person to work with my Mom that day. A whole day with our girls is pretty busy and I think it's unfair to plop anyone in there all alone for a whole day. (we leave by 8 and get home about 9pm). So, if anyone wants to play with our girls and my mother, please please let me know asap.
Friday, November 7, 2003 9:07 PM CST
My voice is tired but my spirit is good. evenSong (the small a capella choral group I sing with on Sundays) members met and rehearsed all day in preparation for our upcoming concert schedule. Sounds ambitious doesn't it? I really enjoy this singing and the people I sing with. FINALLY it is falling into place for me. I am no longer fearful to sing out and make mistakes. I have finally learned "how" to sing this type of music and understand what fits where on occasion. It's hard to explain but it's sort of like a setof puzzles with similar pieces in each one.
The girls and Chris were glad to see me after a day away. I think Chris relished the night out altar serving in a huge wedding at the Cathedral of the Assumption. (he and I both do some service for the parish)
Theresa has begun to get some night time priviledges (baths alone, slightly later bed time and sometimes a night time tv movie). As she had her "big girl bath" we talked and I continued to marvel at how much older she is getting. It truly seems like only a short while ago when she was Ingrid's age and we thought we were SO busy. Ha. She amazes me with her wisdom at such a young age. We talked about her upcoming first communion and what she'll wear, whether she'd like a party, etc.
I love being a mom.
Thursday, November 6, 2003 11:34 AM CST
Hello all you wonderful people. This is Chris updating you about Sarah and life today.
Sarah says that overall this round of the Taxol + study drug chemo regimen is less painful than previous ones. I know that this is the case because she is more active with the girls.
Yesterday, Sarah, Ingrid, Zoe and Theresa went on a scavenger hunt through the neighborhood. It was quite a hunt because they were gone for nearly two hours! I was working on a furniture piece in the basement shop when I heard this commotion upstairs. Then suddenly, the basement door burst open and the two big girls came rushing downstairs yelling, dad!, dad!, look what we got!! They proceeded to pour out their bags onto the table (and floor) and tell me where they found each piece! Unbridled enthusiasm, I love it. Sarah was tired but very content.
We are really blessed to have children that love to learn and explore. So often these days kids loose that desire at an early age and miss the opportunity to really enjoy learning. Sarah and I both love to discover and learn things (although often in very different ways). Nonetheless, we have been gifted with our beautiful daughters.
Thank you everyone for checking out the website. It is awesome to think that people have accessed it over 20 thousand times during the past year! We feel your prayers, and we know that they are keeping our little family moving forward. We love you all.
Thanks
Chris Krauskopf
Tuesday, November 4, 2003 7:55 PM CST
They say this is the last warm day for a long time. We enjoyed being out but I am very much looking forward to some normal fall days, sweaters, soup to eat, the smell of woodsmoke from our neighbor's wood stove, etc... I detest pumpkin pie but I do love making and smelling it.
Our mouse is on the blink, har har and we hope to get one soon. If I am not online for a couple of days you'll know it clicked its last click and we are in the process of buying a new one and possibly a new keyboard (Mac computers have access ports on the keyboard).
Tiredness hit today and for some reason I feel sort of depressed. My blood count was ok, I did not need a procrit shot. However, my white count and ANC was on the low side. Classically, the blood count tends to do its dropping from day 7 onward so this week I must watch out for colds and the like. We all had it a couple of weeks ago. Inga and I still sounding like a couple of 2 pack a day smokers.
Election day. As is our custom, the two older girls came with me to vote. We like them to see what it is and what a priviledge we Americans have in voting. May God guide our newly elected officials for a just and good government.
Monday, November 3, 2003 8:41 PM CST
New photos!
Lovely day here in KY. It's so funny that we are having better weather than Seattle. It's been 70-80 degrees and lovely. Very unusual for November. Chris even mowed the grass Saturday.
The girls had a wonderful time with RuthAnn today. They went with her and her kids to a local u-pick farm. Unfortunately the apples were already done for the season so they "picked" them at the farm's market. The girls had such fun and came home worn out. So nice for bed times.
Miss Donna, a favorite of our whole family, came this afternoon. I just love to watch her interact with our girls. She has a very natural and intuitive way of teaching them. It is not hokey or put on. It is just respectful and aware of the child's age and interests. They really enjoy time with her and I enjoy their enjoyment. (bad sentence I know) I was able to take a small nap before dinner, always a welcome thing.
I get labs and a probable Procrit shot tomorrow. Some day I will no longer have to go to the doctor every single week. It will feel so odd.
Saturday, November 1, 2003 9:17 PM CST
I take a supplement called Juice Plus+. It is a whole foods based supplement that does not promise miraculous cures or anything like that. It is a way to supplement your diet with whole foods in a convenient form. There is a fair amount of research ongoing in cancer centers. Anyway, I began it on the suggestion of a friend. I figured it was not that expensive and would not hurt to do it. Well that was that....well not exactly.
While in Seattle, Chris and I went to church at St James Cathedral. After mass as we exited, a person touched me on the shoulder. I turned and smiled at her and figured it was just a mistake. We went on down the stairs and as I turned around there she was again. With heavily accented English, she introduced herself by name and said she was a nurse in a local cancer unit. She said she watched us all through mass and felt compelled to talk with me. She kept apologizing and saying she never does this sort of thing but she felt God wanted her to tell us something. She said, "Juice Plus, please take it." A tingly sensation went down my back. I said not only was I taking it, I was taking double the normal dosage on the advice of the company (the cancer dosage is 4 caps two times daily). She smiled, much relieved and said that she had 4 patients who had been on Juice Plus for the past 8 months and shown marked improvement in their status. We talked briefly and she disappeared. Neat eh? I just love getting a confirmation on what I am doing.
The arthralgia (joint pain) has begun again. I am doing ok with it, as ok as you can with constant pain. I am titrating my pain meds upward to get control. However, for some reason, I am feeling very drugged in the mornings even though the doseage I have taken is not that high. Wierd. For two nights I have been awake in the early early morning because I am drunk on morphine. I don't understand what is going on. It's nice not to have a bunch of medication in my system except that I am breaking through it way too early for good relief. Grr.
The girls made a good haul trick or treating. They are so innocent. Zoe was thrilled. Every few homes she would say, "I just LOVE Halloween! It's my favorite time of the year!" I delight in seeing the joy in their faces. It makes me nearly cry to think of that innocence being harmed in any way.
This morning I had time and opportunity to hold Theresa and Zoe at different times and tell them how much I love then and how beautiful they are. We should all do that more often.
Tuesday, October 28, 2003 9:34 PM CST
I am back and FINALLY online again after my few day break. I was not consciously trying not to be online, I just was tired and procrastinated. I did, however, take the time to do my nightly paraffin hand treatment.........ahhhhhhhh.
I sang last night for a special service. It was a prayer thing for people mourning the loss of a child. Very simple but quite moving. Afterward I had the opportunity to meet in person the family of a young local boy who recently died of cancer. I have been keeping up on Kyle's mother's diary about him and their family. It was such a wonderful thing to meet them and talk freely. I pray God watches over these parents and family members and their special children in heaven pray for us.
Let me see, the doctor discussion. There was a mix up and I ended up seeing the wrong doctor-not the one I was supposed to see, darn. He is pleased, I am overall well and pleased. Things are going down in size, etc, by feeling my feelable nodes. Next, labs--I am not anemic yet but a bit less than last week. I have chosen to wait another week before more procrit. Other labs essentially normal. My CEA is 4.4 which is a slight elevation from a month ago, but no one was very worried. This happens and we did note, I had both decreased my Taxol dose AND extended my treatment interval by 6 days. There was a scheduling conflict on the study center's part. My next and potentially last Taxol for now is scheduled for November 18. I will probably get repeat scans after that and then go to taking the EGF drug for the time being. There is a potential that they may continue me for 2 or 3 more rounds of Taxol either immediately after the scans or at some point in time in the future. I like knowing the plan of action. The study nurses have been quite helpful in that. It lessens my stress of unknowns.
The treatment was physically hard today. I seem to be getting cummulative side effects and decrease in tolerance of the IV Taxol component. It has alcohol in the reconstitution liquid so the side effects are that of alcohol consumption. I can sort of taste the alcohol when the infusion begins but more bothersome is the overall effect of muscle weakness all over in my major muscle groups. I toughed it out and let them keep the infusion at a rate I was not comfortable with but next time I will ask if we can back off some. I just felt pukey, very very weak, drunkish and unpleasant. Then, at the peak of my ick feeling, I got my lab results back and, while 4.4 is not awful, it just was not welcome news. Currently I am ok with it all but it was just kinda the icing on the total ICK cake of the day.
Mom and I great time together with some wonderful discussions. I love my mother so very much. I thank God for her and Dad every day many times.
I still want to tell a neato story from Seattle but just keep forgetting. Perhaps tomorrow. Now it is late, I am tired, wired and drunk on drugs. Life is.......a beautiful gift.
Sunday, October 26, 2003 6:10 PM CST
Hello everyone, this is Sarah's husband Chris filling in today. Sarah often feels pretty worn out in the evenings so I decided to fill in and give everyone an update.
Well, we are in the waiting period right now. We will get more info on Tuesday the 28th after the next treatment in Nashville. The cancer regression so far has been really amazing. Sarah finally saw the cat scans at the oncology office Wednesday and she was quite impressed with the change. That's wonderful news, however, the Taxol side effects are cumulative and that's rough!
Usually, paitents who receive Taxol also get a steroid compound to help counter or reduce the side effects. Unfortunately, the study drug is adversely affected by steroids and therefore unavailable for Sarah. So she is doing her part for the advancement of medical science.
Some days she feels really great and then reduces her pain medication a little bit. But, by the next day, she is sprawled out on the couch in fatigue, soreness and joint pain. She has told me to kick her if she cuts back on the pain meds. again. Hopefully, there won't be a need for too many more Taxol treatments because the cancer will be GONE!
Thank you everyone for your love, prayers and support for Sarah and our family. We continue to be blessed by you and are constantly humbled by all that you do for us. God is great.
Chris K.
Monday, October 20, 2003 9:22 PM CDT
Tired Tired Tired.
I am beginning to notice a pattern. Regardless of the activity or lack thereof, I get worn out about 3pm. Now I just have to rearrange my life to incorporate this fact.
We began making masks today for use in trick or treating. We got this really cool glow in the dark paint to use on our plain masks. Tomorrow we will add feathers, "hair" and jewels. Hopefully we will go to the Zoo for their thing this week. I may or may not do the neighborhood thing this year depending upon how I feel. I get dosed Oct 28. It could be hard.
I have a growing list of questions for my doctor including advice on narcotic use. I figure I'll relax more about it hearing advice from him.
I try to keep off the sofa until I can't stand it but that's pretty hard. Must be patient, must be patient.
Saturday, October 18, 2003 9:29 PM CDT
Well, another day of sofa surfing. I got up, ate my breakfast, then went to lay on the couch. I intended to get up within the half hour (my back/hips hurt) after my pain meds kicked in but I just never got up. I would doze on and off but just never got up. Finally about 5pm I did. It's days like this that leave me feeling very useless and like a poor parent, wife, person, etc... I keep trying to set some standard for myself as "normal" and then proceed to not live up to it. It is so easy to say "Just take it easy, let your body heal, yadda yadda yadda" but doing it is not so easy. Chris theorizes and I think I agree with him that this week until today I really could not feel ok with just resting. So my need to rest and do nothing caught up with me today. Additionally for some dumb reason I tried to lower my pain med too much again. I just don't learn do I? I just keep hoping I can get off them sometime soon.
What is amazing to me is that when I am in pain (constant type pain, not the severe immobilizing type), if I take an adequate dose of pain med, I have energy and feel so great. Funny how taking a depressant can make you feel "up" if it is relieving pain. Lots of learning going on.
This past week was a lot of fun on the home education front. We did crafts a few days which was a BIG hit. Also, Theresa is about to reach her goal of finishing her phonics book. I told her she could use the CD that came with the book after she finished the book. We bought it in late August. The girl can sure power through a book. Yes, we review and "grade" it. Aside from occasionally not reading the directions fully, she does very well. Doing some workbooks helps me feel like we are meeting some sort of criteria. Anyone who has met and conversed with Miss T will agree, she is quite well educated. Still, you always wonder.
Big day planned tomorrow. Zoe is going to her own Sunday school class now. I am so pleased to see her do something independant of Theresa.
On a totally different note.... I am trying to figure out a way to get some help on a periodic basis. I realize time during the "work day" is harder to come by, especially during the school year. However, if anyone is especially interested in helping out on a regular basis please email or call me. The biggest "help needed" days are the first 3-5 days after a treatment (next one is Oct 28) and sometimes the days that Chris has "away" jobs (ones where he is working in another person's home) that last most of the day. I like to have another person here just to help lighten the load of the kids. It allows me to do Theresa's lessons without constant badgering by Ingrid or to make bread without having to stop and take Ing to the potty or other similar scenarios. Sometimes also, it is helping my mother when she is here with them. Also sometimes it is helping Chris while he is here alone with them and I am at a treatment or doctor visit. We've tried helpers with their kids along but this doesn't work very well. It ends up being work for us which is counterproductive unfortunately. So, again, pray, think about it. If you think you could do some regular time, we would love to work something out.
Golly, the mere act of writing out a request for help is hard emotionally. No one wants to ask for help. So many people use that worn out phrase, "Just let me know what I can do...." . Very poor thing to say. It puts the onus on the sick person to ask for help. No fun. If you want to help someone, think of what you want to do, then call up and say, "I want to do ___ for you. When can I come?"
Ok, I'm off my soapbox now. I'll probably have a burst of energy day tomorrow. Go figure.
Friday, October 17, 2003 8:29 PM CDT
Gee, it's been quite a few days since I last posted. Things are plugging along here. I had two episodes of the severe pain that joined me for my birthday two months ago. This time, however, I took the morphine right away and it was gone within 10 minutes. Unfortunately, the morphine combined with my nightly dose of oxycontin tend to leave me in a drunken state for the rest of the evening. That is NOT pleasant. Last night I was up virtually all night with my own conversations and extremely dryyyyyy throat. Once again, I am very glad my parents live nearby. Mom came by and helped out all afternoon and I was able to nap for the first time in a week.
Something cute this evening:
Theresa absolutely loves to watch infomercials and can be totally absorbed in her tv watching. No, she doesn't watch constantly but when she does watch she can be very hard to "reach". Tonight during dinner, there was a siren going off in the area. Ingrid noted it and began her usual chant of "I hear Oplane (airplane)....see Oplane!" Chris said it wasn't an airplane but an ambulance. I said I thought it was several emergency vehicles including a police car. Theresa then asked what did we think happened? Was someone hurt? She was told there was probably an auto accident. Without skipping a beat she said, "Well, they need to call Darryl Issacs" OH MY!!! What a HOOT! We just laughed and laughed (Darryl is one of those ambulance chasing attorneys who advertise on tv....I'm Darryl Issacs...if you've been in a car accident, see me and I'll get you the money you deserve." The girl sure knows her commercials. Perhaps one day I will go into her favorite infomercials like the Quad Blade, Miracle Blade knives....the Jack Lalane juicer, etc.
I am very glad I received a lower taxol dose this most recent time. Even my feet are beginning to "thaw". It is so nice to have sensation again.
Monday, October 13, 2003 9:22 PM CDT
Lovely day, regaining energy but each day saps me regardless of my activity or lack thereof. Mom came for bread making today.
I thank God and my parents often for their decision to move here. The providence of their move's timing and their home location is amazing. Since I have not experienced the alternative, I can't say we could not do it without them, but I am so very very glad we never had to try.
I have nearly a full week more between this most recent Taxol treatment and my next one. I have no idea how much I will receive. Dr. B at the study center told me he wants me to get "as much Taxol as possible" and that is why we decreased the dose-so I could continue to receive it without the increased toxicity. My fingers are noticeably less numb. My feet are still pretty numb in areas. It feels like there is something on the soles of my feet. That is quite a bother but not life altering like numb hands are.
The paraffin bath is seeming to help with my hands. They are not nearly so cut up this time. Maybe it's also helping the neuropathy, I can't say.
I am way back down on my pain meds now. I am trying to decide whether to go off them or not if the opportunity presents itself. The recent hooha about the Rush Limbaugh drug abuse certainly wears thin with me. I get tired of the press miss reporting the ability of correctly prescribed, pain warranted oxycontin to become addictive. They make it sound like those of us with legitimate need and prescription are at great risk of addiction. Believe me, I get NO high, only pain relief. The process of getting on the med is so noxious that I can't imagine wanting to abuse it. Now I do know that most big time addictions are not due to normal or appropriately prescribed use. They are people who have figured out a way to circumvent the time-release feature of the drug and get an intense high. Even so, it gets very tiring to hear about it. But...please do know, I will only go off it if I truly think I don't need it. I'm not into being some sort of brave martyr. That's stupid.
Friday, October 10, 2003 8:42 PM CDT
I just read that Caring bridge is undergoing some modifications so it may not be accessible this weekend. Be patient...I'll be back.
For those wondering...today was good. The girls and I did well. We got school done, did a fun craft and I didn't nap, but Ingie DID! yay.
Hopefully this will be a quiet and uneventful weekend. I pray that Taxol pain is minimal and going away now. I have a few extra days before my next cycle this time.
Prayers for the pastor in Muncie, IN who died this week.
Tuesday, October 7, 2003 9:23 PM CDT
Sorry I didn't post sooner. I am feeling much better, thank you everyone. I was just wiped out last weekend. I still fight fatigue daily but luckily I can do a few things now.
I was telling Mom today how disappointing and frustrating chronic fatigue is. I was in the parking lot of Meijer the other day dreading the walk to the back for prescriptions,etc. That trip wore me out and it was by no means a full shopping trip.
I expect I'll be getting a procrit shot tomorrow. I have a blood count check here in town. I am short of breath at rest once again. That's a bit disconcerting.
On an up note, the girls are doing well. They are having a ball playing outside with a couple of old umbrellas. It is such a joy to see them play with each other. Ingrid is never far from her big sisters. She loves them so much.
Inga is mostly day time potty trained but we aren't pushing the night time stuff. There are days when she wants to go every 10 seconds it seems (and she goes!) and days like today when she was so engrossed in her sisters that she would not come inside to try to go.
Flu shots for the girlies today. Chris and I will be getting them some time in the next week or so. As usual, Zoe reacted as if there was a 10inch needle with a square tip. Theresa, on the other hand, was Miss Cool this time. Ingrid wanted to fuss more but she was too taken with the blue bandaid they used. I love my pediatricians.
Here's to more energy, may it return soon.
Saturday, October 4, 2003 9:37 PM CDT
On the heels of my visit to my local oncologist was my every 3 week Taxol visit to Tennessee, Oct 2. Dr. H said he felt we should press on with the meds and work on getting all the cancer wiped out. Sounds good to me. I also spoke to Dr. B and he ordered me to have a slightly smaller dose of Taxol so that I don't get as many side effects. His words were, "I want you to get as much Taxol as possible and by lowering the dose, we should be able to give you more overall." It made sense to me when stated that way. I still experienced a bit of a reaction to it when it was being infused. I think I'm just a little more sensitive to it. By the end of the treatment, I just needed to sit or rather, lie, still for about 20 minutes before leaving. I am very glad I can receive it in a bed rather than a chair. The doses have been progressively more tiring. It was this way with my first chemotherapy this past winter/spring.
Today was a very very down day, physically. The painful joints began about 7am just as Chris gave me my daily morning dose of pain medication. I waited and waited for it to kick in but it never seemed to fully. I ate breakfast and took a very long bath but no real relief. By the time Ingrid went down for her nap about 12:30, I went down on the couch with Zoe next to me. I didn't leave that position until 4:30pm. Even then, it was all I could do to get up. I feel like a slug when I am that way. It's really the first time I have been that down for a day. I just had no motivation to do ANYthing. I hope tomorrow is better. I don't like feeling that way, it makes me feel like an unfit mother and wife.
Oh there was a bit more good news--my CEA (tumor marker) which was 5 last time is now.......... 2.5!!!!! I am in the normal range (0-3 is considered normal). Woo hoo, I am normal. I sure hope I begin to FEEL normal some day. :)
Wednesday, October 1, 2003 8:32 PM CDT
Thanks to everyone for the well wishes. I am still taking it all in, the depth of it all.....finally GREAT news of my recovery underway. Please remember I am in a clearing, but not out of the woods yet. I need to get all that liver stuff gone also. However we are heading in the right direction.
Today was a very hard day. I tried to decrease the oxycontin since I get symptomatic over 40mg. Bad idea. Silly me. I took a bunch tonight, much better. I think I really pulled some muscles in my chest this past whirlwind weekend. Pain is exhausting. It doesn't make one feel very empowered. It is oppressive.
I was reflecting on yesterday and you know, it just isn't like it is in the movies. There is no music playing, there are no soft light effects. The room is the same bland exam room, a bit too cold and you sitting on the silly table. The doctor, who is a gem, still has to remain a bit held back because he knows this is a long haul thing and we are not all done. However he is happy. When you finally hear, you feel good but you aready pretty much suspected it, just like the times I have received bad news. So you leave and kind of say to yourself, "Gee I think that was the good news I expected, wasn't it?" It did not really sink in until I had read the reports about a hundred times. Don't get me wrong, I am happy, very much, but after all this time, I am physically and mentally worn way down. The toll for getting well is high...you feel very very wrecked and wracked.
I spoke with my Nashville nurses and they seem to feel I will get my Taxol tomorrow. I'm such a glutton for punishment. I think I will ask for a little less. The numbness/tingly feeling is not mostly well like last time. Also, I have had Taxol type pain most of the post treatment period this time. That is atypical for me. It is very tiring.
I am looking forward to my ride with a dear friend tomorrow. I really like these drives. I just wish it did not involve getting massive doses of "feel bad" drugs.
More tomorrow or Friday.
Tuesday, September 30, 2003 9:07 PM CDT
Exactly one year ago today I began chemotherapy for stage 3 colon cancer. About this time of the night I was busy feeling flu-ish and tired. I bedded down early. A lot can change in a year.
Today I had a doctor’s appointment to go over the results of the scans from last week. It was remarkably good news. You may relax now.
There are NO new liver lesions. What liver lesions that remain are significantly reduced in size. An example given by the radiologist is of the largest one which went from 17mm to 8mm. Yay.
The retroperitoneal lympadenopathy (big word for positive remaining lymphnodes in my back) is significantly reduced in size and number. It is not able to be accurately measured because it’s appearance is that of scar tissue. (as per the radiologist). Dr. K said to me that he could not find ANY of the prior huge (7 x 11cm) mass in my midabdominal lymph node area. This is the biggest thing that we have been treating until the liver lesions showed up. It is what I refer to as the “tumor”. Once again, YAY.
This is very very good news. I would say it is exactly what we have been asking for. Thank you all for your prayers thus far and thank you to God for all his help thus far. I am still taking in the amazing-ness of it. I knew there just had to be dramatic results what with my dramatic decrease in CEA and decrease in pain since July.
As it stands I am still set to go back to Sarah Cannon Cancer Center this Thursday for my 4th Taxol. PLEASE pray I continue on this. I want ALL of that liver stuff gone also. I don’t want to stop until ALL cancer is gone, dead, Kaput....etc.....
This was the perfect topper to a great weekend in Seattle. The weather was uncharacteristically warm (it was record high one or two days at 84 degrees). Sunny every day, cool nights. The bed and breakfast we stayed in was so nice, very comforable yet elegant. Food was superb, the hosts were so gracious. They even packed us a going away breakfast on the morning we left (since we were leaving at 4:30 am--way before normal breakfast time). It was located in Kirkland, about 8-10 miles from downtown Seattle.
Yes, it was heavenly to spend nearly 5 whole days away from our girls and all the responsibility and mental energy they involve. I am amazed at how much Chris and I get done when we are with them. Being away with none of that responsibility was fun and very easy to fill the time.
This was a return visit for me and a return to a place where Chris had lived. We did about half of a mountain (non-technical) climb by North Bend (where Chris lived). So nice to return to a place that I go to in virtually all my guided visualizations and relaxation sessions. A deep, old mossy, fern-y forest with the heavy odor of earth, evergreens and cool air. Day two we took a long ferry ride from downtown Seattle to Bremmerton and back. It was very relaxing to just ride and take in the beauty of the scenery of Puget Sound. We also looked at some shops and a furniture gallery. Dinner was an unexpected treat from an online friend. We ate in Redmond which now sports a HUGE downtown outdoor mall/retail/commercial district. Everything is so new and young and wealthy--I guess that is what you get when Uncle Bill Gates comes to town. Saturday we enjoyed a HUGE breakfast (at lunch time) at an elegant lodge/spa at Snowqualmie Falls (biggest falls in WA state). We were seated in a private room directly over the falls. Afterward we took our time returning to the B&B by exhausting ourselves further doing some shopping at a mall in Bellvue. Saturday evening we spent a little while walking on a nature path by our B&B that goes through a wetlands area. Very pretty and nice place to watch the sun set. Sunday morning we attended church at St James Cathedral in Seattle. The mass was very good and so was the music. I even got to hear one of my favorite anthems, Beati Quorum Via. The rest of the day was spent downtown in Seattle doing shopping in the Pike place area. We ventured home that afternoon very very tired. 4:30am Monday came way too early as we left the B&B and headed home via American Airlines.
We were so tired we were in bed by 8:30 last night. Needless to say I did not feel like getting online.
There will be more updates and bits of information including one spine tingling story in the upcoming days. Tune in here, for the next episode of "As The Colon
Turns."
Wednesday, September 24, 2003 9:42 PM CDT
Well, we are packed and instructions are all written. My home is far from as picked up as I would like it but the kids are happy so I guess all is in order. I am so happy to be a part of such a loving and generous large family. Thank you so much for the trip, we are going to love it.
It was a very tiring day for me. I was up bright and early and left here by 8am. I had CTs of my chest, abdomen and pelvis (so my only food from midnight until 10am was barium, BLEAH), Chest xray, resting MUGA scan (heart test for study) and bloodwork. I also got a procrit shot. My levels were just low enough to allow for one. That's good, now my hemoglobin will be nice and high for the trip.
I am having some pain tonight that I want to chalk up to stress and weariness. I have not napped for 3 days or more and have had this trip and all it entails on my mind. Then the LONG day today. I skipped dinner and slept on the couch. Afterward, I put Zoe to bed and feel asleep in her bed also. I really need a rest. It's scary any time I feel pain in my back. It's hard not to imagine it is because of cancer. I know my levels are WAY down so it is not likely. Please God, help me to relax and stop worrying about it. I have increased my meds in hopes of no pain.
Chris and I have never flown together. I used to fly alot for my work but haven't in at least 8 years. Amazing. A lot has changed in the industry. Ticketless travel...leaves me a bit worried I don't have some vital bit of info.
The kids are in the able hands of my parents, Chris' mom, and his sister and neice. We have a couple of friends coming through also to augment. I think the girls will be spoiled rotten. That's what family is for eh?
Unless we hit an internet cafe, this will be my last post until Monday so don't fret. I have decided not to call KY for a CT report. It would only worry me. I see Dr K on Tuesday for a report. We will download a bunch of pictures onto "You've Got Pictures" when we get home. Then everyone can share in our vacation/honeymoon.
Life is good, God is good, family is good. We love you all.
Monday, September 22, 2003 8:04 PM CDT
Pretty good day today. I decided to take the girls to Grandma's house for a change of scenery. Theresa did lessons there while Zoe and Ingrid played. They just love going there and playing. I love having my mom nearby.
I am more than ready to see the results of my scans which are scheduled for Wednesday. I can't decide if I want to call up my oncologist and find out the results or not. I see Dr. Kommor next week the day after we get home. Surely I can wait until then. There simply MUST be signs of tumor regression with a drop in CEA that I have had. There just MUST be. I feel too well not to have had some major change.
It's funny, even though I feel good, I nearly crave getting more of the Taxol "just in case". This feeling of wanting to be sick/treated/etc... is common amongst people living with and surviving cancer. You get so used to feeling bad as a sign that the cancer is in retreat, that you almost fear feeling too good. Even though the study staff have told me they can back off the meds a bit if need be, I find myself wanting to have ALL I can just to make extra special sure that every stupid cancer cell is DEAD! I can withstand a huge amount of symptoms if I know it is going mean remission.
Tomorrow is a big day, lots of packing and cleaning for the big trip. Pray I get it all done because Wednesday I am out most of the day for tests and blood work.
Saturday, September 20, 2003 9:22 PM CDT
A gorgeous fall day! This is my favorite time of the year.
We took an impromptu trip to the zoo this morning. While in the Islands part of the zoo, we visited the orangutans in one of the indoor areas. I just love watching the apes, monkeys, etc...I could stay there all day. In this exhibit, the orangutans can get right up to the glass and you are separated by only the glass, face to face. I took off my hat and got an immediate response from the one next to me. He then summoned his buddy in the rafters and they both came to look. Then I put my bald head to the glass and he kissed it. He proceeded to motion to me to do it again and I did. Again he kissed. He also indicated his hair. How fascinating.
I may have found the most viable solution to my fingers and hands yet. At the urging of my sister, I purchased a hot parafin bath unit. Ooooh it feels nice. The girls and I treated ourselves to a treatment tonight after dinner. I'll post the effectiveness of this treatment in a couple of weeks. The ultimate cause (chemo) of the bad skin will have to eventually go but until then I hope to have better hands.
Friday, September 19, 2003 9:47 PM CDT
Many people may scratch their heads at my husband's guestbook entry. Let me try to explain. We were talking while away last weekend and both realized how very satisfied and happy we are with our lives together. With all honesty and including the cancer, it truly is the best time of our lives. I can think of nothing more fulfilling and joyful than having a life mate who you can trust and talk with, who truly respects you and your opinions and who is the joy of your life. Our experience of this past year is one of those major life experiences that can either draw a couple apart or pull them together. We were pretty close before but now we are much closer. Instead of talking about doing things, we try to do them. Instead of thinking of saying something to one another, we do it. You get the idea. I think for me what seals the deal is the way he steps right in and keeps our family life going even when I feel rotten. He can get a real meal on the table, wash dishes, do all the childcare activities, etc, and could do all that before the cancer hit our family. Yes, it is a great and happy time.
Ingrid is raising quite a ruckus about using the big potty. So, as I plod through each pukey morning/day/eve, I have decided to follow her lead and help her learn this essential skill. She is so fascinated with it all and the big girls join in on the "festivities". It's funny. I just love the look of accomplishment on her face whenever she is successful. Also, her verbal skills are rushing ahead at breakneck speed, so there is constant banter about her new skills and her desire to practically live in the bathroom.
Zoe is in some sort of strange phase right now and it's very frustrating for me. Anyone who spends much time with her knows she has quite a dramatic streak. It's been almost impossible to deal with her of late, especially on my bad days. Please pray we get some enlightenment on how to deal with her.
Mom came and helped out today, thanks so much Mom. We often marvel at God's planning regarding my parents decision to move to Louisville and how provident it was that they were here a while before all this cancer stuff happened. It is mind boggling.
Well, I am mostly just taking up space writing. Hopefully I will be back in the habit of daily posts again soon. Just in time for our honeymoon this coming week! Yippeeee!!! We are so excited. It will be so nice to have 5 days of time together with no kids. Be still my beating heart.
Wednesday, September 17, 2003 9:29 PM CDT
I got behind on my pain relief today. I figured with it being a week after Taxol I could cut back the oxycontin but I was wrong. This cycle seems to be hanging on longer than the others. I was in moderate pain all day. That is very tiring and exhausting, not to mention depressing.
I feel like I did nothing. What I accomplished was:
Getting dressed (although I never got my contacts in), eating breakfast, washing the breakfast and lunch dishes, fixing lunch, doing lessons with Theresa and Zoe and that's pretty much it. At noon when Ingrid went down, I insisted that T and Z do very quiet activities. So, after locking the doors, Zoe and I nestled down on the couch with a video (so I could sleep) and Theresa went to her room and read to BunnyWunny and his relatives (he's having a family reunion you know...). Ingrid was merciful and slept over 2 hours, so I got about an hour of sleep undisturbed. We had dinner at my parents. I am so grateful for that. They are pure gold for us.
Yes, I took more oxycontin tonight and I do feel much better. I am really hoping my blood count is low enough for a Procrit shot because I am depressed and short of breath at rest (two of my common anemia symptoms). We shall see tomorrow afternoon.
My fingers are sore, I must stop. Thanks to all for prayers, please email if you are interested in helping out Sept 25-30. Of course if there is a Mary Poppins out there, please oh please contact me! I neeeeeed you dearie.
Off to enjoy some calgon.
Tuesday, September 16, 2003 8:51 PM CDT
I have had some rather strong side effects of my treatment in the past couple of days and I am tired. However, I am doing fine from the cancer standpoint.
My hands are pretty numb and the splits on the fingertips are very painful. It makes typing difficult so this may not be very long. I am now trying a new lotion from the Body Shop. Honestly I think nothing is going to help much until I am off the anti-cancer drugs. It's just something I live with. It is very wearying to have a very sensitive part of your body in pain all day and all night.
Chris is working hard to get in a couple more projects before we leave for Seattle next week. It's becoming a reality--a REAL trip! If anyone wants to help my mom, mother-in-law and sister-in-law while we are gone, please email me. We'll try to work something out. I know it will come together before we leave. I think Zoe will have the most problem with us leaving. She is very sensitive and in that "not quite a baby and not quite a big girl" stage. She suffers so when Theresa strikes up an impromptu friendship on the playground rather than playing solely with her sister. Theresa is a big part of Zoe's life. I always have prayed that Theresa and Zoe would be best buddies. It is so nice to see that happen.
Ingrid has begun a sincere interest in using the toilet. OH MY! She wants to get in position and sit there a LOT! Today she was on and off it several times and at one point I hid the kid sized one to get her to stop. She broke out in a wail - you know the gagging, screaming "Oh my goodness what IS she doing to the child" type of tantrum. Chris even came in from outside to see what was the matter. The whole while she screamed "Want go potty, want go baby pottttteeeeeeeee!" So sad. I hope and pray she decides to learn this skill quickly. I think she will because she is so motivated and she sees her sisters doing it. Hang on for a fun ride.
I spoke to the study center today about my symptoms and while on the phone discussed my CEA. The study nurse made it very clear that a drop in tumor marker as large as mine had not been seen before. She and the other staff members are quite encouraged by my response. I am thrilled with it. I can't wait to see less than 3.
Sunday, September 14, 2003 10:36 PM CDT
Just a quick note since it is nearly midnight. The trip to Indy was great. We were hosted in the most gracious manner by my dear Uncle and Aunt. I experienced significant pain most of Saturday but finally got it under control today. Travel is hard but very worth it when you can see lots of family and also enjoy your spouse all alone for a whole day!
I am loving life with a CEA of 5.
Wednesday, September 10, 2003 9:03 PM CDT
A normal CEA is considered to be 3 or less. Today my CEA was 5. Needless to say, I am so very very thrilled! Everyone at the study center came to my room asking if I knew my CEA yet. They were all so happy also. What great news from a great group of people. The treatment went well today and they gave it nice and slow so my effects during infusion were minimal. Taxol has alcohol in it, so that now makes it clear why I feel drunk when I receive it. Additionally, I see these really cool squiggly lines in my field of vision for a few hours afterward. Gee, an effective treatment AND fireworks for free. What a deal.
My dear friend Rose drove me today. What a fun day we had. She is such a sweet and gentle woman. We had wonderful discussions and solved pretty much all of the world's problems, I do believe. It is such a comfort to be so well cared for on my treatment trips. I was relaxed this time and able to sleep for a while (they give you a whopping dose of IV Benadryl as one of the premedications and it makes you pleasantly sleepy). I put on the headphones and the MP3 player and dozed off to dreamland.
This has been a happy day all over. There were two very popular helpers at our home with Chris and the girls. Miss Jane, from evenSong came with her croquet set which delighted the girls. Then Miss Donna arrived in the afternoon and dispensed her sweet and loving spirit to them. Jane and Donna are both big favorites with our girls. We are quite blessed to have such good support.
Tomorrow I need to pull things together for our trip to Indianapolis for my cousin's wedding. For once I am looking forward to the drive to Indy and Muncie (the girls are staying Saturday night with Grandma and Grampa K-what an adventure). They are also soooo revved about spending their first night in a hotel! They can't wait to pack up and go. Thank you Uncle Rex and Auntie Linda for the fun Barbie backpack/rolling suitcases and for hosting us this weekend.
Now for a HUGE THANK YOU!!! to some very dear people in our lives. Chris' siblings and assorted family members are sending us on a very special vacation. It is for only Chris and I. They are even arranging to babysit with the girls. We are going to Seattle for 5 days and 4 nights at a B&B. There will be plenty of sight seeing time and some potential reunions with some of Chris' friends from when he lived there. Chris and I never had a honeymoon and have never been alone and away from the kids. So this IS our honeymoon we never had. Thank you so very very much to our family for your generosity, support and love. I am humbled beyond my ability to properly express. This is incredible. :)
Tuesday, September 9, 2003 10:10 PM CDT
2 entries on one day. I just uploaded a photo of a quilt I received today. It was created by a very special group of friends. I have never met any of these women in real life. We all post to a board for people using positive discipline with their children. This was a shock and humbling thing to find this gift in the mail today. Thanks SO MUCH PD friends!
I guess the quilt photo is so big it bumped off my baldie shot, oh well.
Off to get some jungle juice tomorrow!
Tuesday, September 9, 2003 12:44 AM CDT
Well I have made it to the time before another treatment. My fingers are feeling nearly normal so it must be time for more taxol. Can't get too feeling too good eh?
I'm down to 30mg of oxycontin daily which is pretty good. I haven't been that low in a long time. It makes me feel much more normal to be on much less medication. I am not going off it because I know when the taxol hits I will be wanting more pain medication. UP, DOWN, thus goes the roller coaster.
I took the girls with me to Meijer's today because I needed to go and could not bear the thought of doing it at night. I am so tired by 7pm, I don't enjoy going out. Anyway, the girls were royal heathens at the grocery! Ugh. On top of it all, one of my prescriptions had not been called in so now I must make ANOTHER trip to Meijer to get it before we leave on Friday. Big sigh. I dread trips to Meijer with all three girls. It is hard work.
Saturday, September 6, 2003 7:50 PM CDT
By popular request...an update.
Yesterday and today were the annual community yard sale in my neighborhood. Anyone who has not been to the Bitterweet sale, it is HUGE! All the streets in a mile or so radius are involved. We usually only sell on one of the days and we picked today. We did very well, selling nearly everything we put out. The things that did not sell were all under $1.00. All our "big ticket" items sold. It's nice to have a small amount of fun cash. We splurged on movies and pizza, since it is our 8th wedding anniversary. I even had a Pete's Wicked Ale (which I rarely have due to all my meds and lack of a sense of taste).
The weather is so beautiful it almost hurts. So nice after a week of rain. It is so good to get the girls out each day. They play well together.
Theresa and I are up to the third Narnia book, The Horse and His Boy. She and Zoe were in the back yard a very long time this afternoon and eventually rushed out front to tell me a big surprise. They found Narnia! They saw Aslan and everything. For anyone who has never read these delightful books, you should. They involve a magical land where animals talk and the ruler is a huge lion named Aslan. Children happen upon this land through various portals here on earth. For the girls, they entered through our bushes. It was so neat to watch them after dinner as they entered once again and then danced all over the yard. They were exhilarated talking about dancing in heaven in Narnia. What a look of pure joy. May we all have that experience!
Wednesday, September 3, 2003 9:25 PM CDT
Phooey, I had a whole message done and it got lost, grr.
Blood count was better today. My h/h was 12ish and 39. Woo hoo, I can breathe. My white count is more sluggish to rise but gradually will be fine by next week. I just have to be careful and wash hands a lot.
Mom has her gallbladder out tomorrow. I'm sure she is glad to be leaving that organ behind. I am eager to see the surgeon in post op (she is the same one I had). She has not seen me upright in a long time.
I began some new things this week in hopes of decreasing the peripheral neuropathy. Glutamine and a B complex vitamin. Pray this gets better. It is VERY irritating especially in the early morning. It feels like I am walking on marshmallows and my fingers feel like they will never wake up.
I am so glad to see the endless rain of the past several days let up. The girls are so very eager to play outside (read: play in the resulting MUD). Sigh.
My friend affected by the fire is getting some good help this week. It appears they may be able to move back to their previous home (which had not sold yet). Interesting twist. They are continually in our prayers.
Tuesday, September 2, 2003 9:25 PM CDT
As if it weren't enough to have nearly all my fingertips affected by Taxol induced-neuropathy, I cut my ring fingertip on my left hand the other day. OW!
Mom came over today and helped out so I could make my weekly bread rations. It was sooo good. One of the perks of making your own bread is a piece directly out of the oven as soon as you can slice it. MMMMMM! We usually have a ritual slice. Even after baking all our own for 8+ years, it's still a treat. Now if I could just reach the state of sanctification that allows me to enjoy letting my girls help. Argh.
Something we are encouraging and I am helping supervise is the girls (the older two) making their own breakfasts. Theresa and Zoe love making their own eggs in the microwave. I figure it is really worth the effort to help out. Many days Theresa makes breakfast for her and Zoe and we hear them doing it then sitting down and saying prayers and eating. I love it. Growing up is so much fun some days.
I have to say I really am enjoying having a smooth head. I haven't gotten so bold as to go in public bald (other than in my yard/driveway) but I do like it. It's cool and so very easy to get ready to leave the house when I need to. I finally cut up some Tshirts for a special head wrap thingie and I like it. Very comfy. Now I have on order some adult baby caps. I need them for night.
I was telling a friend tonight that I am looking forward to next week and it's Taxol treatment. In the backwards world of cancer, feeling a bit bad equates with doing well. I am willing to undergo and endure much in order to get all my health and a full recovery. So, even while I am nauseated or aching, I am glad because it means things are working. It's all about perspective isn't it?
Saturday, August 30, 2003 10:26 PM CDT
Today is an auspicious day. This night one year ago I was at Norton Suburban hospital having the emergency surgery which changed my life dramatically. I went to surgery somewhere between 930 and 10pm and awoke for the first time about 2am in the ICU. Chris and I have been reflecting recently that even with all the drug side effects and everything I've been through this year, I am still feeling better than I did this time last year. I had had so much pain and worry about my health. I was so worried. Yes I feel much better this year.
I have been feeling a little down this week and wondering if I needed more zoloft or something when it dawned on me tonight it was the anniversary time. I would bet I will begin to feel better soon. If I don't, then I will consider more zoloft.
The girls and I went out today to get some items for a care package for our friends who had the fire. It's such a good feeling to be able to give back to someone who has been so helpful to us this year.
At a week post "hair" I am beginning to adjust to the feeling and the different ways of covering my head when I go out. I am also beginning to recognize that funny looking woman who stares back at me. I have several hats and scarves so it is kind of fun to experiment with different looks each day. I'm not sure, though, I'll ever get used to feeling the cool breezes on my head at night.
Thank you God for this amazing year and all I have learned thus far. I thank you each day for each day and all it holds, good and bad.
Friday, August 29, 2003 12:06 AM CDT
I tried to get on last night but the computer was way to slow to do any real work.
Yesterday I went to a "Look Good Feel Better" seminar offered by the cancer society. What a nice service. It is totally free and they give you cosmetics and all sorts of handy dandy ideas for covering your head when the hair is gone. It was neat to be in a room where everyone was gonna be bald or had been bald or was currently bald. Several of us uncovered and showed all. It's a wierd but friendly sisterhood. Unfortunately, all but me and one other woman were living with breast cancer. They have some very unique needs and different chemo/radiation things. I would love to find a group of people for support who have colon/liver/pancreatic type cancers.
The girls are amazing me lately with learning. Just about the time I think I am going to HAVE to do something regimented for teaching they show me just how creative and intelligent they are without any direct "teaching" on my part. Today they created space suits and a space ship for going to the moon.
Theresa is learning to tell time and count change. She is so excited to learn a very useful skill. I am glad for her, but now we can no longer fudge what the time is at bedtime, boo hoo. Zoe is beginning to show interest in writing and some reading. I need to find her some sort of left handed writing book. There are some very special things about learning left handed that we righties don't realize.
As usual, not wanting to be left behind, Ingrid is right up at the table with us when we do "school time". She wants me to do playdough and "Make a ball" for her. I just love watching her develop her speech.
Nothing real big to speak of medically other than now I have periodic itchy palms. What fun. Hopefully benadryl will control it. Ah yes, one more pill.
Wednesday, August 27, 2003 9:14 PM CDT
I am in a bit of shock. A friend's home burned down tonight and I just found out. The family is safe and unharmed but sounds as if all is lost. They have small children who are friends of ours. I can think of few things that frighten me more than the prospect of a home fire. Please do as we are and keep them in your prayers tonight as they recover from the initial shock of the event. They are very strong people and I know they will emerge stronger from this but right now it is just so sad and shocking.
Kinda makes it seem pretty small to even mention any of my physical woes this evening.
Theresa and Zoe are loving their new paper dolls. I finished cutting them out tonight. It's neat to see the delight in such a simple thing.
My blood count today was overall pretty good but a little low. I still got a Procrit shot for the anemia. Maybe next week I won't need one.
I'm sorry, perhaps tomorrow I'll feel more like writing. I am just so sad for my friend and her family.
Tuesday, August 26, 2003 9:29 PM CDT
Wow, don't get online for a day and email piles up. Of course so does spam. My fingers are fairly numb but it doesn't seem to affect my ability to type. That's good because I sure can't write comfortably these days. I had to go send a special letter the other day and realized how much the neuropathy is affecting my dexterity in my right hand. Well, that and Ingrid trying to take control of the pen.
It's been a good couple of days. The girls have done a bit of last week swimming which I am so proud of. They have done such a great job learning this summer. I can't believe that only a couple of months ago they both clung to the railing or a person and would neither one put their heads under. Now they go across the pool unassisted and Theresa will go most of the way underwater! Amazing. Ingie will probably follow next year. I'd like to find a way for them to continue to swim this fall and winter. They really enjoy it.
I am still having joint pains at the long ends of my medication times. I am sure it is lessening but those "ends" (between 5am/pm and 7am/pm) can be trying. The numbness of the fingers and toes is very bothersome. Just try to imagine your fingers or toes have fallen asleep and just won't wake up no matter how hard you try. Very irritating. It's wierd because I also experience pain (from small skin splits on my fingers). The study nurses say I can take Neurontin if I want but I keep wanting to not add another pill if I can help it. You never know when you are gonna take the one pill that has cross reactions.
A cousin's wedding is coming up and we are going to go to Indianapolis for it. I am looking forward to the two night hotel stay and a night without the girls. They are going to spend a night with their Grandma and Grandpa K. They are also excited about a night in the hotel.
Tonight I did something I have looked forward to for a long time. I got out some magazines I had saved which have paper dolls in them. I sat and cut them out for Theresa. She was so alive with excitement about them. She was such a delight. Even with sore numb fingers, I would never have missed cutting out all their clothes and accessories. I treasure that memory and the sight of her box to hold them. These are the things that make life worth living.
Sunday, August 24, 2003 9:53 PM CDT
I am gradually adjusting to the new look. It is so very cool in this weather, which is a nice bonus. I only wish that the bald fashion statement was more accepted in Kentucky so that I did not feel compelled to wear a scarf or hat in public...it’s hot.
Theresa comments on it alot and I think that she would rather see me with hair but overall she is ok with it. Zoe just likes to rub it from time to time. Ingie woke up and saw me and stared then said, “Funnnnnyyy Mommy! Funny!” Then she likes to rub my head. Ah I am but a plaything.
Once again, I was musing over my life with cancer and kids and I do have to say I don’t know how people who do not have children do it. They are my energy, my life, my excitement, especially on days when I don’t feel well. I can not imagine being single or without children and having a bad day. Chris and the girls are so much help in the emotional realm. I can honestly say there are very rare moments when I feel like I can’t handle what has been put on my plate. Also we don’t just “survive”-- we live, we enjoy life and each other. I think some people can not imagine how I get up each day but it is really not that hard (ok, it’s physically difficult sometimes with sore joints and all that stuff) and once I’m up, I just deal with stuff as it happens. Isn’t that what all of us do?
I am having a bit less Taxol symptomatology each day which is nice. I have no cancer pain at all, just the expected side effects from Taxol (joint aches and pains). I actually try to leave a small amount of the Taxol pain because it keeps me in check and keeps me from doing too much which is very easy to do.
The side effect from Taxol that bothers me the most is the neuropathy of the hands/feet--constant numbness of my toes, and several fingers. I am going to inquire about taking something to relieve it. There are a few things that some physicians have recommended. It’s a very odd sensation because coupled with the numbness is pain from some superficial skin splits like I had this winter. Hard to imagine the two symptoms residing together.
We have help tomorrow, yay. I just love it when I think ahead. Anyone interested in bringing frozen meals please let me know. They are always appreciated.
Enjoy your day, night, whatever. It’s the best one yet.
Saturday, August 23, 2003 9:30 PM CDT
23 August, 2003
Check out the photo page.
Today was the big day. The day I took the plunge and finished off the hair job. Theresa sat behind me, after the others had gone to bed, and helped me pull out hunks of hair. I finally had had enough and was ready for the shaving. I thought it would just all fall out and I suppose it eventually would but I was tired of waiting. Did you know it’s actually painful when it is ready to come out?
After shaving it with the clippers I use on Chris’ head, Chris lathered up my head and used the Venus razor. I am now quite smooth. It actually feels really neat. Now I officially belong to the “No Hair” club. I’m so curious to see how it grows back in some day.
So far my brows and lashes remain. I will really look odd when they go.
I wonder what Ingrid will do when she sees me tomorrow. Zoe will probably be a bit scared, Theresa has seen it, minus the shaving but Ingrid, who knows? She has never known me without cancer and it’s trappings. She doesn’t know that all mommies don’t have a “gentle” on their chest. (she calls my port “gentle” because that is what we tell her when she reaches for it). Now she will begin to paint a mental image of mommy with no hair. I don’t really mind just as long as she always has the real thing (me) in her life.
Friday, August 22, 2003 9:51 PM CDT
New photo... hair update. Last night and tonight I sat on the couch pulling my hair out, literally. I have several large packed handfuls so far and there's still quite a bit left. Now I look rather moth-eaten.
I woke with a fever this morning. With my parents busy with other things today and 3 youngsters in bed, I was not about to rush into the ER to be checked out. I took ibuprofen and waited it out. It appears I have a sinus infection. Additionally, last night, Ingrid rammed either her head or foot into my abdomen (I can't recall which but I think it was her heel/foot). It hit right at my incision and was very painful, but I forgot all about it until I was in the shower today. I was washing off and felt all this tenderness in my abdomen right near my belly button. I looked and felt and it appears that I have developed a sizeable hematoma (big bruise) where she kicked. It is very painful. There isn't alot we can do about it but wait. Dr. Kommor saw me today because of the fever and hematoma so I have been officially seen.
On a good note, my aches and pains were a bit less this week than they were the last cycle of Taxol. Small blessings.
Wednesday, August 20, 2003 8:48 PM CDT
Today is a good good day. New photo on the photo page.
I had my second dose of Taxol today. Apparently it is pretty much the maximum dose they give. They were astounded that I still had hair. Amazingly, while at the center I began to notice small bits of it would come out when I scratched. I am molting. I figure I have until about the weekend before it's all gone. A new phase in life.
I met with the oncologist who has a not very reassuring bedside manner and left me feeling very anxious about my status and future. Then I decided that he just doesn't know how to communicate the facts in a positive way. He didn't say anything untrue, he just didn't do anything to help me feel positive in the light of what has gone one with me. The study nurses agreed with me that my assessment was correct. Boy, delivery of news is such a sensitive topic.
ANYway. The most excellent news came as I was finishing up my Taxol. Carol came to my room and asked me to guess my CEA (carcinembryonic antigen-tumor marker) level. I sighed, shuddered and said sadly that I just could not take any more bad news, I was wiped out. She said, "It's good news, take a guess." (you might remember this level has continually risen throughout therapy and my last level was 49) So I guessed 40 and Mom guessed 20. She said it was lower than 20. I was shocked! My CEA today was 11 (eleven) !!!!! I am so very very very happy. Finally some really good really measurable, tangible evidence of my feeling good for so many weeks since the prayer service and beginning of the study regimen. My heart is light and full of joy. I am so thrilled to have good news.
My red cell/anemia measurements are rising and I feel it. My white cell/infection fighting measurements are good also. Now I will drop some as expected but luckily I am dropping from a higher level. All is working well. My body is doing what it is supposed to.
Dose #3 of Taxol is scheduled for September 10. After that treatment and before the next I will have repeat scans and a MUGA (heart test).
Life is good.
Saturday, August 16, 2003 9:12 PM CDT
We had a nice visit with Chris's sister, Joanie, and her daughter, Heidi today. It's nice to become reacquainted with people you don't get to see often. We did some errands and the obligatory Mac Donald's lunch for the girlies but mostly sat and talked at home. Joanie has been a big help to us bird dogging our medical bills and statements to make sure all is paid and covered as it should be. So far so good.
My hair is still all there. I am so tired of waiting for it as I did last fall. The TN oncology staff has been quite emphatic about me losing it all. I would just like it to happen and be over with rather than couching all activites, etc with a proviso that I might not do them if all my hair falls out that day. Tomorrow I am to cantor the 930 mass provided I am not hairless. The choir director doesn't seem to mind if I am hairless or not but I think I would be too nervous at first. I have a completely ready backup there for tomorrow just in case. This is such a strange time.
I'm getting geared up with physical support "staff" for this upcoming week and the anticipated side effects from the Taxol I am to get on Wednesday. Mom will be busy on the 21st and 22nd so I must make sure help is coming. I hope it is not as bad this time now that I know what to expect but we have no idea and the nurses say it is quite variable from cycle to cycle. Once again I am poised with shaking knees on a precipice from which I must jump but can't muster the nerve.
Sure is hot here lately. State Fair is going on so I guess it is supposed to be that way. You know I would not be at all upset to have a high of say 80 this time of the year.
Thursday, August 14, 2003 8:35 PM CDT
Thanks everyone for all the birthday greetings! It really was a nice birthday. All that, and I got to still have my hair. 3 weeks post Taxol is still a few more days away. Each night and morning I feel my hair but it's still quite intact. I will be glad when it is gone and I don't have to worry about when it is going to happen.
Boy was it an uncharacteristicly busy day today. I was so grateful for the loving presence of a dear friend, Donna. She made it so much easier to get everything done. The girls love you Donna and so do I!
Life is an amazing thing. This time last year I was experiencing severe abdominal pains which were still unexplained and frightening. At that time if you were to tell me I had stage 3 colon cancer I would have freaked out, but when I finally learned of its existence in the early hours post op, I was honestly relieved and continue to be. I know what to fight. Happy about it? No WAY! but relieved to know, yes. I don't wish the kind of worrying I had on anyone. Now my main goal is to continue on a healing path to total remission. I still feel good other than last night's really wierd fluke of a pain episode. Thank you God for life.
Wednesday, August 13, 2003 9:20 PM CDT
What a truly wonderful birthday! It began with a very loving exchange of gifts/cards from Chris and the girls and progressed through the day. Mom and I drove to Nashville for my weekly visit. While there, the staff surprised me with an ooey gooey dessert and candles and singing. Joan and my sisters in law brought a cake yesterday and tonight my mom made my favorite cake for dessert. It was a BIG day for dessert.
Tonight I had a very sudden, intense onset of severe upper back/midabdominal pain. NOTHING relieved it positionwise. Within minutes it was unremitting. I was scared and panting, it was so very bad. It began immediately upon finishing my fantastic meal and high fat dessert. (I also had had 2 cups of real coffee this day which is very rare for me) “Gallbladder-like” was ringing in my ears. After a large dose of morphine and no relief, I called and spoke with my oncologist. I was very determined to remain at home if at all possible and told him that. So, he coached me through it and explained how very much more of the morphine I could take. After speaking with him, my parents and Chris all laid hands upon me and prayed and I took more morphine. Within about 25 minutes it completely abated and I am fine now, even 3 hours later. God is good and morphine is a blessing. It was so odd since I have been so totally painfree prior to now. I am fine now so I am chalking this up to some dietary thing. God please be with me and I promise not to abuse my poor body with so much bad food from now on.
My blood counts remain low. I shall restart iron....again. I got another Procrit shot today. I hope to lessen the shortness of breath soon.
Thank you everyone for prayers and love. Happy Birthday to me and may I have 60 more!! :)
Tuesday, August 12, 2003 9:05 PM CDT
New photos! The lamb photo is from our visit last week and the other is one of the nurses at TN Oncology.
Mom and I leave bright and early for TN and my week 2 visit. I don't get more Taxol, just a symptoms and blood work check. I enjoy the trips for the most part which helps. If anyone wishes to join and drive me on a trip, please let me know and we'll line you up. After next week I will only go every 3 weeks. The every 3 week visits will last a bit longer (maybe 4-6 hours, depending upon how quickly I get seen in the clinic downstairs before going up for my 2-3 hour Taxol infusion). So, they will be full but fun days. It's a good way to spend very focused, in depth time together. For a reasonably introverted person as I am (yes, I AM) it is quite satisfying for me to be able to spend that kind of concentrated time with someone. Honestly, I'd welcome the presence of a friend as long as the friend doesn't mind sitting alot. Mom and I have played dominoes, talked, watched TV, read, played cards, etc. Then there is the 3 hours down and 3 hours back with a meal each way.
My girls have been giving me all sorts of "gifts" (wrapped things of theirs) and cards all week in anticipation of my birthday tomorrow. I am quite pleased to be 40 this year and I am looking forward to many more birthdays. This time last year I was really getting anxious about my health and feeling excessively tired due to the anemia. I am so glad not to feel that way anymore. Yes I get drug side effects but nothing for me has been worse than not knowing what was going on inside me and fearing all sorts of things. It was a very scary time last summer.
Theresa is growing up so quickly. Today, my mother in law, Joan and 3 of my sisters in law came to clean the house. What a great thing. Joan brought presents to everyone and for Theresa it was a latch hook rug kit. I cringed knowing it would fall upon me to show her how and deal with endless whining, crying and frustration if she did not pick up the skill right away. Tonight, after everyone went to bed, Theresa's endless requests to begin the craft were finally answered. We sat down and I calmly cautioned her that if her patience well was not very full, we would need to put the craft up for a while and take it out in a few months. She teared up but I said we'd try. Well, within a couple of demonstrations, she was doing it herself. Within a few minutes of doing it independently, she had adapted her style and did quite a bit of it. Amazing, Hallelujah! Thanks Joan, she is loving these big girl crafts.
Good night to all and to my 30's. They say life begins at 40, so here I go!
Saturday, August 9, 2003 8:28 PM CDT
Another fun day with the Krauskopfs. My friend, Heath, has horses and has been asking us to come with the girls to his farm for a long time. We finally got there today. His horses are beautiful and so nice. The girls were appropriately cautious but not scared. Both got right up on the horses and rode with Heath holding the lead line. They just beamed! I was so proud of how mature they were. The trip was rounded out by visiting with all the farm cats, especially the tiny kitten, Belle, who lives in the house on the farm. The girls spent quite some time holding and petting her. They were in love, two of young girls’ favorite animals in one place-horses and cats. Thanks Heath and family for such a great time. They still haven’t stopped talking about it.
This afternoon we went swimming at the grandparent’s pool. I continue to be amazed at how well both of them swim. At the beginning of the season, neither would venture from the shallow end steps without a floatie suit or floatation device. Now they rarely even touch one. We joke that all we had to do was purchase water wings and neither one wanted them any more. Theresa swims the width of the pool underwater and Zoe will swim on the surface the length of it and into the deep end. We are so thankful for the lifeguard, Deanna, who got them to overcome their reticence and quite literally plunge into swimming. I am so very very happy to see them do this. Fear of water is such a crippling problem that I would have hated to see in our girls.
Overall I have felt so incredibly normal from a physical standpoint this week. (if you ignore the shortness of breath and a few assorted episodes of random vomiting, ugh...oops...puking) I try to take advantage of the normal times to the fullest. Yes, I still take a daily nap almost every day at the same time as Ingrid (shouldn’t we all?) and yes, I still take all the oxycontin. I just feel “different”. Last night at 11pm I realized I had not taken my oxycontin. I was sort of achy in my joints but really not feeling that bad and most of all NOT feeling the tumor pain at all. I was amazed. Makes me wonder what’s going on in there. I am trusting and believing that healing is definitely taking place. I am far from typical so why should it heal in a typical way either? Oh and, NO, I will not be cutting back on the pain meds until at least the first on study CT is done. I have learned my pain lesson very well.....don’t hurt, drugs good, pain bad.
Theresa doesn’t know it, but tomorrow evening we are taking her to see an outdoor production of the Wizard of Oz as result of a generous friend’s gift of tickets. To offset the sure-to-follow round of “woe is me” from Miss Zoe Bernhardt, we have arranged for her to have a special afternoon alone with our favorite Miss Donna. I’m so glad Ingrid doesn’t yet get a vote in social activities.
Better get to bed and rest up for another great day. Thanks to everyone for continued prayers and support. You are priceless to us.
Thursday, August 7, 2003 9:36 PM CDT
Well, I still haven't gotten the pictures online yet but I will, trust me. It was a busy, full day ended with everyone in tears from tiredness, etc. Miss Lisa came and helped out, thank you SO much Lisa, it was such a life saver. As a teacher, she is used to seeing the effects of tiredness in kids and was so understanding about our grumpy group of girls.
Soon I will be posting a list of post Taxol dates when I know I will need help. Anyone who is wanting to help out, please contact me via email or phone and we'll work something out. I am so thankful for the network of friends who pitch in when needed.
Thanks Charlotte for dinner tonight. It is such a comfort to know as I drive home in the late afternoon that a warm dinner is on our table. I hate coming home to a hungry screaming crowd. Thanks to all our dinner helpers who make special efforts to get our dinners here at good times for us, even though it means going through heavy traffic. That is such a show of love.
There was much play of "farm" and "baby lamb" and "cave" today by Theresa and Zoe. It is so good to see them process all they learned yesterday. I love it when we score a jackpot--a great, fun trip that is also a good learning experience.
I honestly am feeling quite well of late and my tumor pain is nonexistent (on oxycontin) rather than the breaking through pain I kept having prior to this week. I think the power of prayer and positive affirmation is so very powerful. Thank you everyone.
Wednesday, August 6, 2003 9:19 PM CDT
I will try to post pictures tomorrow of our wonderful day today. We took Theresa and Zoe with us to my clinic visit in Nashville and then to Kentucky Down Under on the way home. I HIGHLY recommend this excursion to anyone with small children. It is well worth the admission price. Caution: plan for at least 3 hours to really do the place well. We were there from 330pm until nearly 630pm and busy ALL the time. There is a cave tour, a sheep station tour and another that we missed. It is family operated and very very family oriented. Our little home schoolers loved it and it was such a natural learning environment and very hands-on. Zoe was right up with Theresa touching the lizards and snakes, peering all over the cave and taking pictures. They both got to feed and play with baby lambs (Theresa carried hers to the pen and Zoe corralled hers) and feed Lorikeets and Lorries. They even got to pet a kangaroo and take home an emu feather. The park operators run a wonderful place. I can't wait to share the pictures.
The clinic visit went well. The girls were charming and way too active. Thank heavens the nurses were very indulgent and understanding. We were one of two patients there. My blood count is dropping appropriately for being on taxol and the study drug. My infection fighting part of the blood is pretty low and my mouth and esophagus are paying the price with erosions and sore areas. I now take more prilosec and use lots of magic mouthwash (a mixture of xylocaine, maalox and benadryl makes your mouth very numb). My red count was low as I expected. It was 9 and 29 which means I got a Procrit shot to help it go up without a transfusion. Now I have to force myself to eat red meat, raisins and chew on a cast iron skillet, ha ha. I knew my count was low, sleeping even made me short of breath and anyone who spoke to me on the phone this past week got to hear me huff and puff.
I return next week on Wednesday--my FORTIETH birthday. Man oh man does 40 sound like a FABULOUS age to be. You know considering the alternative, it's great. I may get a birthday present of no hair so I have been gathering hats and scarves.
I must go to bed as tomorrow promises to be WORK! Miss Ingrid had a full day of complete attention of both grandparents. She will probably be quite dismayed to find we say no to her tomorrow. Alas, real life interrupts my dearest baby.
As Theresa would say, "No day could be as special as this day!" Good night.
Monday, August 4, 2003 9:00 PM CDT
New photos! I opened a package from the mail today that included several bright bandanas. I tied one on myself to show the girls what I'll look like and of course they all had to have one. Then Theresa and Zoe (fresh from T's viewing of Sinbad) had to have an eye patch also. So there was much activity in the basement as they played pirates of the Carribean.
Overall, it was a very whiney day all around the Krauskopf household. I just don't "feel" good for long stretches and I have only a little energy. That, combined with the medication I must take to feel able to get up and move, makes me feel depressed, despite the zoloft. I probably do need more of it but I know that part of my feeling is related to the disease and the treatment. I was pondering the human ritual of sleep this afternoon and trying not to fall into a deep well of depression over doing it mid day most days. I still have night/day mares often which bother me but I suppose it's also therapeutic to allow one's dreams.
I worry about homeschooling some days. About the time I really get scared we are doing nothing and our girls are being raised by the wolves, Theresa or Zoe does some thing that just brings light onto the subject. Theresa and I are half way through, "The Magician's Nephew" which is the first of the Narnia series (I always thought #1 was the Lion, Witch and Wardrobe, but the books say otherwise). She is really following the story, which is not very simple. Zoe is finally recognizing numbers and letters and asking for "school" which consists of me making dotted line letters/numbers and her tracing them, etc. She is also recognizing math in simple forms. Lord, please allow me to enjoy my girls and not fret over the details of teaching. They are learning so beautifully.
On a totally different subject, I am also developing Taxol associated neuropathy in my hands and feet, mostly feet and lower legs. I feel like my feet are perpetually awakening, after being "asleep". However, they never quite reach the pins and needles stage. It comes and goes but each day it hangs on just a bit more. I am pretty sure this is reversible, I sure hope so. I am not wasting a lot of time worrying over this since it's impossible to prevent. Also, the taxol is helping to heal me.
I don't know why other than healing that I should think this but I feel "better" in terms of the tumors. Perhaps the overriding pain of the taxol effects has lessened my sense of the tumor pain, but I don't think so. I think something IS happening, be it ever so small, I really think it is.
I am also concerned about getting enough help on various days. If anyone out there has a tug on their mind to do some volunteer work with us, please let us know. We're nice and fun :) Also, I have a few dates that a dinner would be nice. This Thursday is one. Next Wednesday and the one following are others. I'll have to do a "help" post soon. It has been amazing each time I have asked for help, the right person shows up. Thanks to each of you.
Tomorrow is the prayer service. Please join us in spirit if you can not attend.
Sunday, August 3, 2003 1:16 PM CDT
The joint pain lessens each day but the mornings are pretty hard. I have to wait for the oxycontin to catch up with me. Then I am nauseated and so the cycle goes.
I spent church time at children's church today to help out. I am not sure how much help I was. My daughters were not exactly prayerful or reverent today. I am sure it was not helped by having their mommy there (although Zoe always begs me to come). It was a bit like obedience class for cats. At least I did not have to stand for long periods of time.
This new round of drug related side effects has once again caused me to look inward for strength and the mental capacity to continue on in the treatment. The joint pain is incredible. It is so very hard to be patient and kind with your little ones or even with your husband when you are in constant pain and the pain meds make you pukey, dizzy and hypersensitive to sound. I try very hard to be patient and walk away whenever I can. I rejoice in (maybe that is too strong a word--hmmm, I appreciate) the apprearance of drug side effects because it means they are working and "doing" something. I pray that the something they are doing is the right something.
Here are some details for this Tuesday (Aug 5):
Prayer service to be held at 7pm at the Cathedral of the Assumption in Louisville. The church is at the NE corner of 5th street and Muhammad Ali Blvd. You can park on the street or nearby flat lots for free. I think the Galleria garage is also free at that hour.
Directions to the Cathedral:
From Indiana--65 south to Jefferson st exit. Turn left onto 1st street and right onto Muh Ali. Take it to 5th street--park nearby.
From East Louisville--take 264/64 to 65 south--see above OR take 64 west to the 3rd street exit ramp--take 3rd to Muh Ali, see above
From the south of Louisville--take 65 north to the Brook Street exit. Go to Muh Ali (2 streets from the exit ramp light) and turn left. Take Muh Ali to 5th.
I don't imagine the service would be more than an hour. There will be singing by the Cathedral choir and evenSong and the assembly. Father Bill will also be doing an annointing of me. There will be a reception afterward in the basement/undercroft area. Children may attend as long as they can be quiet during the service (there will be no nursery that I know of). Our girls will not be there--two of them are in bed by 7, and Theresa has opted to stay with her sisters and the baby sitters.
Saturday, August 2, 2003 1:04 PM CDT
Hello everyone. This is Sarah's husband Chris filling in for the day. Sarah's new medications (study drug plus Taxol) are wiping her out at times. The Onc. office in Tenn. said that side effects would start in about 2 to 3 days after receiving the meds. Well.... They have! She is having shooting knife like pain in all sorts of major joints. Even with an increased dose of oxycontin it is often very hard for her to move. Last night I thought I might have to carry her to bed. But she managed to get up from the couch, kiss the girls good night and go to bed. When I came in a little later, she was shaking the pain was so intense.
Never fear that is why she has breakthrough pain relief medication called oral morphine! It helped some. After we said some prayers and I annointed her back with holy water,Sarah said the pain decreased significantly. Hmmmm... interesting!!!
The good news in all this is that the shooting pain should decrease as the days progress. It is comforting to know that the medication is behaving like the researchers expect.
Thank you everyone for your love and incredibly generous support. we are just overwhelmed with how giving so many of you have been. God bless you all.
Thursday, July 31, 2003 7:44 PM CDT
I am back from the Athens of the South. It was a good journey and thus far I am feeling quite well. They told me I would feel pretty good at first but to expect or rather not be surprised if some aches and pains appeared on day 3 post medication. However they also said I may not experience as much since I take a lot of oxycontin. We shall see. So far so good. My tongue feels funny like it did on 5FU but otherwise I'm pretty normal.
My mom and I went together and shared a hotel room. It was nice to have the time all alone with her. We both froze in the study center and alternated with hot flashes day and night. Many good games of Mexican train dominoes were had. However, the most fun was had when I opted to take some IV phenergan during my taxol dose because of extreme nausea. Boy am I a hoot on drugs! I kept drifting off but because of interruptions every 30 minutes (for blood draws) and my general nature of not being able to sleep in a strange place, I was in a perpetual half asleep state. I first tried to use the great headphones a friend has loaned me but mom would say something and I'd have to take them off. Then I left them off... then I began talking. I would apparently be mostly mumbling and began on a recognizable theme...then I would drift off it and make NO SENSE at all. I'd catch myself just as Mom would be laughing at me again. I'm quite entertaining on drugs. Luckily the nausea waned and I woke up more. The day was long, beginning at 730am and ending at 9pm. I had a special faucet type IV in my arm for blood draws so I did not have to be stuck over and over. My port was used for the taxol part of the regimen. I have included a picture of me all hooked up on the photo page.
Because one of the pretreatment medications includes a steroid, I once again have my brilliant pink cheeks today.
Even though it was nice to be alone for a couple of days, I am very glad to be back home with my girls and husband. Zoe was extra cuddly and asking for her special flower field story at bed time (something I do to help her visualize sleep and pleasant dreams). Theresa and I began reading the Chronicles of Narnia tonight (special gift I got for her). Ingie is talking up a storm, even more than when I left. I got her a "wuh wuh" (dog) book. She carried it all around and talked about "Ingie's wuh wuh book".
As usual the house was in our normal order and there was no awful mess. I am so very very thankful for a husband who recognizes that the house is a shared responsibility and respects me enough to help keep it up when I am gone. He's also able to cook for the girls so I never have to worry they ate cheetos and cheerios all the time.
I'm feeling very good about this study and my status. I don't really know why but I do. Each night before bed, Chris and I also do a special prayer time. I am so glad we are doing this and wish we would have begun it a long time ago before the whole cancer deal. We read a scripture (of late it's been some sort of psalm or similar passage), then we pray about our day. Chris blesses me with some holy water that a dear neighbor gave us, then we end with the Lord's prayer. It's a nice way to say good night. I rest much better also.
Thanks to our friends, Jane, Ruth Ann and Donna who helped out. Anyone wanting to spend some fun time with our girls and us is welcome just about any day time or afternoon (between 4ish and 7) for bedtime routine. I am not quite as fatigued as I was with radiation but the help is always a good thing.
Thank you also to everyone who has donated to our medical expense fund. It is such a blessing. You are dears. I wait with much anticipation for the day when Chris and I will be the donators to someone else's fund.
Monday, July 28, 2003 9:23 PM CDT
I keep finding myself realizing I need to post here. Sorry for those of you who keep track of me and my living soap opera. Here's the episode for today.
Poor Chris...he and Dad and my brother Kent were all geared up to see the CALFEX (Combined Air Land Field Exercise) at Ft Knox today. However there was some missing information in the ticketing and they could not get in. It's this great big testosterone filled day of tanks, helicopters and real live fire ammunition at Ft. Knox. They went a couple of years ago and loved it. Poor guy, I try to let him have the guy times he needs and it's rather upsetting to miss one. He is so surrounded by girls.
I am excited to be leaving tomorrow afternoon for Nashville. Chris and the girls will be here with various helpers in and out. Anyone wishing to bring food tomorrow, Wednesday or Thursday, please call him and do so. Same with helping with the girls.
As far as the treatment, I am really excited to get something going, finally. I feel like I've been in limbo for several months, even though I did radiation in the intervening time. I have felt pretty good the past week. I went by the oncologist's today to pick up some narcotic prescriptions and I am not sure Dr. K believed me when I said I felt pretty good and was very glad to be doing the study. He recommended it as compared to what I was going to try in lieu of the study.
While at the doctor's today, Theresa and Zoe wanted to go see Miss Kim the social worker. It was so cute. I brought them to her office and then Theresa gave me a "look" and I said, "oh, do you want me to leave?" to which Miss T said, "Yes Mommy, we need our privacy." Cute girl. I let them have a chat and gathered them in a few minutes. Their independence (esp T's) amazes and sometimes saddens me. They are growing up, boo hoo.
Yes, to everyone who has noted it, Ingrid is VERY tall. She measured 35 inches at the WIC office the other day. She is also 30 lbs. No wonder we get tired holding her. She communicates so very very much now. If you don't understand her she repeats herself over and over under, exasperated, she grabs your hand and takes you to what she wants. (either that or she pushes you to it). I love watching her develop.
Enough for now, my eyelids are drooping and I must sleep.
Friday, July 25, 2003 12:13 AM CDT
New photos, for a change of pace.
Each evening, Chris and I marvel on what a wonderful piece of furniture he created. Yes, private viewings may still be arranged, just call!
I am feeling very good of late. It is amazing, simply amazing what an adequate dose of pain medication and an antidepressant will do for you. I have a determination to do things and the energy to do it. My blood counts are still a bit low but that is normal for me. I am sleeping better also. The Ambien helps me to avoid much of the narcotic dreams which are so obsessive and bothersome. I am meeting regularly with my therapist and that is doing alot also, I am sure.
I spent a fair amount of time on the phone with Carol, one of the Nashville study nurses. It brought back a lot of memories of my work in research. I am very comfortable with the trial now and looking forward to it. I told someone last night, FINALLY I will begin to look like I have cancer. I am not complaining about looking good so far but it's hard to explain to people that you have this serious illness when you look so good. I am also quite curious to see what my head looks like. I have a very small head, so finding hats to fit it may be difficult. I'm not an off-the-rack person with hair normally, they spin around on my head. I got a catalog from the American Cancer Society with lots of interesting and fitted hats in there. A new adventure. I also realized another nice thing to pay attention to would be earrings. Something to make my head have some adornment. It's hard to imagine one's own head suddenly stripped of all hair. The loss of eyebrows and eyelashes is what is really wierd to see. I lost most of mine last time and I kept thinking there was something "missing" from my face but it wasn't until one day when I thought I would put on mascara that I realized what it was...no lashes! What a funny way to find out.
That's all for now folks!
Thursday, July 24, 2003 9:39 PM CDT
Not much to say today. I am dealing with things pretty well today. My pain is controlled which means I am doing things and cooking. All this is very good.
The prayer service will be Tuesday August 5 at 7pm at the Cathedral of the Assumption. Downtown parking is free in flat lots and the street after 6pm. I hope all who wish to will come. I am looking forward to it.
I'm off to bed and evening prayers.
Wednesday, July 23, 2003 11:53 AM CDT
Yesterday qualifies as a good day. Mom and I went to Nashville to have an exam and for me to get the information necessary for me to enroll in a research trial being conducted there. The trial involves the use of a new type of medication called EGFR, epidermal growth factor inhibitor. I explained how it works incorrectly a while back. It does not interfere with the development of the tumors blood source, rather, it interferes with some of the deep dna level interactions which cause the tumor to replicate. I will be on a study using the EGFR and Taxol together. The hope is that the Taxol will help increase the regression of the tumor growth. Taxol is mostly used in certain lung and breast cancers. It is not normally used for colon cancer, however they have found that people who express certain epidermal growth factors (like the ones I do) are susceptible to the taxane type drugs and therefore Taxol has been added to the regimen in hopes that it will work even better.
The nurses, Noel and Carol, and Dr. Burris all confirmed that there has been actual tumor regression in some patients on this study thus far (it has been going on for over a year). They were very encouraging and positive. That, combined with the very real potential for tumor stabilization caused me to decide to participate in the study. Initially I will need to travel to Nashville weekly and the first visit will require a two night stay. However, after that, I will only have to come to Nashville every 3 weeks. Not too bad.
Now for the fun news! Side effects!
The EGFR causes an acne like rash, usually not severe but present in most cases. It also causes some mild GI effects. The Taxol, on the other hand has some really “lovely” ones. Peripheral neuropathy (nerve effects in the hands/feet) which ranges from mild to severe and large joint achiness. Additionally, Noel told me I WILL lose my hair this round. I told her I never lost it all with CPT-11 and she assured me that it IS a definite. So, I guess I’ll get used to scarves and hats. I don’t think I will bother with a wig. Most don’t look like the person and there’s maintenance and the itchy/hotness of them. No, I think scarves and hats will be fine. I’m not too worried about it but it does make me feel a slight bit anxious as I await the big day. They tell me just about 3 weeks, to the day, I will lose all of it, slick all over. Oh boy.
The overall mood was very positive yesterday and I left feeling really good. They were also quick to point out that by stabilizing my case for a while I will probably get a chance to take one or a number of new drugs due to come onto the market very soon, including Avastin, the new angio-inhibitor (interferes with tumor blood vessel development).
The girls are glad to have me back and are very anxious to have their turn visiting Nashville. I hope we can do a small amount of sight seeing while there with visits. It will depend upon how I feel at the time.
I guess my cantoring will go on hold as I become a public spectacle. I don’t think my being bald in front of a crowd will be conducive to worship, even if I do make a lovely fashion statement with my head gear.
Another astounding realization came to me yesterday. Pain relief for me is pretty black and white with very little grey. I need to take the oxycontin to get pain relief. Disgusted and tired of feeling perpetually crappy, I opted to take 60 mg of oxycontin yesterday and prayed I would be comfortable. It worked. Yes I was a bit tipsy and a bit nauseous but the pain was GONE! Then the fireworks of realization.... If I don’t take enough pain medication I am just wasting it. I might as well flush it down the toilet. It takes whatever it takes to get my pain to go and I need to take it, period. Now that I have realized that, I am finally comfortable again. Someone please just knock me upside the head with a brick next time, it will be less painful and quicker.
On to other things. Theresa said to me the other day, “Mommy, Daddy tells me that you are taking Zoloft now.” I said I was and she said she was glad. She said she knew it was working. I asked how did she know it was working and she said she just knew, Then, the other night I was playing with the girls on the floor, giving the baby rides on my feet as I lay on my back. Theresa came over and kissed me and said, “this is how I know you are taking Zoloft.” Neat eh?
Thursday, July 17, 2003 8:50 PM CDT
Wow, I am impressed and humbled by the sheer volume of support and love notes I have received. Thank you.
I am doing better today. Either the elixir of shopping and getting a great deal is healing and/or the Zoloft is a better drug (ha, right, like 24 hours of a drug would be that dramatic...I vote for shopping). Anyway I am doing better and feeling ok. Not great, but ok.
Last night, my brother called me and we talked about me and cancer and all that rot. As we were talking and I was feeling a bit mechanical in my response, then something took hold. My true and deep realization that we really DON'T know how long ANY of us has here on Earth. We could be gone in an instant with no preparation or gone after a very long life with much time to prepare. I realized how very fortunate this diagnois has been for me and my family. It has helped cement our love for each other and our determination to live life well. None of us knows the hour or day of our death.......no one. How can any of us be so bold as to waste and not appreciate each sacred moment for what it is? wow...profound, good night
Wednesday, July 16, 2003 1:02 PM CDT
The CT scan was Monday and yesterday I decided to ask my doctor to call with the results. He really did not want to but he honored my request and called. Here are the results:
-The adenopathy (lymph nodes) has not changed (no bigger, no smaller)
-There appears to be a few lesions on my liver, the largest of which is 1.7 cm
Once again, what a revolting development. I have been crying a lot. I am so very unhappy with this latest news. He cautioned me that he had not actually seen the films yet so there is an outside chance that the liver development is not as significant as the xray reader thought it was.
I am changing my antidepressant from Elavil to Zoloft. I have not experienced a significant reduction of symptoms on the Elavil and with this latest news, I doubt it will improve. I also have been strongly advised to take my sleeping pill (Ambien) more often for now.
I will see Dr. Kommor on Friday to review all this and determine what is my next move. After speaking with the Tennessee oncologists today, I doubt I will be enrolling on their study at this time. I am not sure I will be able to stay off meds until the time they can enroll me. I would worry too much that the cancer would progress significantly. We will probably proceed on a regimen of Oxaliplatin and Xeloda asap. I keep wondering if some other chemo might be more effective. I am not a standard colon cancer patient and so far all standard therapies have not been helpful. I wish I knew more about oncology.
Thank you everyone for continued prayers. A few dear friends at my church are organizing a healing/prayer service. Anyone is welcome to attend. It will probably be Monday or Tuesday evening, the first week of August. The priest will do an annointing of the sick and there will be some singing and prayers.
Up to now I can honestly say I have not wasted my time on “why me, God” comments. Truly those thoughts are a waste of time. What I would like to know is why the tumors are not responding to anything and why my otherwise healthy immune system seems to be impotent. That said, I really don’t need to know why, I just REALLY want something to work. The radiation appeared to but this past week has seen me develop significant back pain again and that is both frightening and frustrating.
So, for now I am sad, cry often and am still not feeling like I am dying. I still do not plan on dying of this cancer. Prayers are still most gratefully accepted. I love all of you. Thanks.
Monday, July 14, 2003 9:16 PM CDT
I was greated with excited voices as I returned from my day of waiting room”bliss.” (a LOT of time logged in waiting rooms today). The girls and Chris did an all day project. They built a song bird house. They researched it on the web, built it together (yes, our girls use real tools, etc) and painted it to match our home. I think I”ll have them build a few more. I love to hear of them working together. We often get so wrapped up in our individual concerns that we forget to just let go and do something totally different and fun.
I watched a neat movie tonight. “Tuck Everlasting”. It was the new Disney version. What a lovely film. “.....do not be afraid of death.....be afraid of a life not lived....” Is the advice one of the immortal characters of the film tells the heroine. Nice thought. I recommend the movie.
Of late I have had a hard time doing “too much”. Some days “too much” consists of anything aside from eating and sleeping. Other days I have mowed a yard. Wierd stuff going on. I keep wondering what people would do who keep saying that trite and useless phrase, “....Just let me know what we can do.........” would do if I called tonight and said to be here at 9am tomorrow and help me out, or to watch my girls so I can have a fun shopping day. I know most people just say it because it seems like a nice thing to say. If anyone REALLY wants to help, please, please do as some have and call me with a specific thing you want to do and I will probably not refuse. One of the things that wears me out is trying to orchestrate “help” and then to come up empty handed when I really do need help. Most days I could use some adult conversation and an extra set of hands. (I usually don’t have need of grand gestures... just help doing what I normally do so that I dont’ get worn out). That goes for Chris also. He works from our home, so when Ingrid the Destroyer gets going, he can’t do anything. It’s a funny place to be-feeling pretty good all things considered but knowing help would be welcome.
Minnie Pearl goes to the shop tomorrow night to get her new belts, water pump, etc. We’ll be scrunched into the White Knight for about 24 hours (my old 1987 nonairconditioned Integra--the rolling sauna). Ah, family bonding!
Sunday, July 13, 2003 2:14 PM CDT
Tomorrow is CT scan day. won't hear about the report for a few days so don't ask me tomorrow how it was. I am praying it is all gone but if not all gone, at least a major improvement in it's status. I feel like I have "the thing that came and would not go away.
Funny thing going on. I get pain..........when sleeping. This occurs mostly when I take a nap. It is wierd to get pain while sleeping and not while doing much. Certainly makes it hard to pin down. How much more low impact can sleeping be?
You can't believe how ready I am for this cancer experience to be over.
Friday, July 11, 2003 8:28 PM CDT
Well, it's been nearly a week. Sorry about not posting much. I don't have alot to say sometimes. Also I have been very sleepy in the evenings, which is also when I have freedom to post.
My oxycontin dose remains mostly at 20mg twice daily, which pretty much covers me unless I have a very busy on my feet day. Sometimes I have done 10mg but 20 seems to be better. I get pain from time to time usually in the late afternoon. It feels like menstrual cramps rather than the excruciating pain I was hospitalized for. I pray and imagine it is healing pain...not cancer pain. It certainly feels different. My skin on my back is a shade or two darker than the rest in the pattern of the radiation now. My skin there is a slight bit tender also. Not bad considering what was done to me. My hair is all back and my hands/feet are pretty normal now.
I will be travelling to Nashville (www.tnoncology.com) July 22 for a meeting about my potential study enrollment. The actual enrollment will not take place until Aug 7 because of study bed availability. I will probably enroll if there is any tumor left.
I get my CT scan this Monday. I pray so very heartily that the tumors be GONE or only minimal. I can't imagine they have grown.... I mean, I feel better, I look good, how could they possibly be bigger?
Poor Chris and poor Minnie Pearl (the van). He is a very good auto mechanic and fixes nearly all our car problems. So, he set out today to do some very important maintainence and replace a whole bunch of belts and things on her. At about 3pm he reached an impass....it took a special tool no one has in stock to fix the part. So.... he had to give up and put her all back together and call the experts at our local mechanics to fix her next week. Sigh... I hate to spend hundreds of dollars on fixing a car, esp when we are paying hundreds/thousands in medical care. However, I am very glad for the blessing of some very well timed donations to our account so that we can afford to fix her up now and not wait until she blows some important belt or hose in the middle of heavy traffic. Thank you God and thank you friends. So, Chris is a bit wiped out and has nothing to show for it. Also, he has to spend several hours next week rehooking up the radio which has some special computer codes that can't be read w/out taking the dash apart. UGH.
Tonight we are watching and laughing at our copy of "Joseph and the Amazing Technicolor Dreamcoat". What a clever show. The girls love it. We needed a laugh so much.
Sunday, July 6, 2003 8:26 PM CDT
Last night for evenSong to sing compline until September. What a nice break. Compline will still be sung but not by us. It is so awfully hot in the loft I am sure glad. Tonight I sang and it was really work. The heat combined with the posture needed for singing is very hard on my back and tiring. That is something I have never gotten used to, the lack of stamina. I pray that comes back over time. I don't like feeling like a limp rag.
A pretty quiet week for us is planned at the Krauskopf estate. Brief visits are welcomed especially when the girls are in bed (after 730pm, yay). Time for adult talk, woo hoo.
I have had several comments from various people about the article about me and the family and how we deal with cancer and it's fallout. It's on page 35 of the current month's issue of Today's Woman (a local Louisville publication). I don't know if you can see it at their website (www.iamtodayswoman.com) but I guess it's worth a try. Be on the lookout for the August issue of Louisville Magazine. There is a column called "working" and I am the featured person, another big woo hoo. Unfortunately it is about my doula work which is nowhere as busy as I used to make it. I am being very very selective about which clients I take so I don't wear myself out.
It's been nearly a month since the grand dresser was installed and I must say I LOVE IT!!! There is so much space that I don't really know what to do with it all. Fear not, I'm sure I'll manage.
Friday, July 4, 2003 9:49 PM CDT
A bit more potentially good news. I got a call the other day from the staff at the Sarah Cannon Cancer center, in Nashville. Remember them? They have tested my original tumor and lymph nodes for the presence of epidermal growth factor. I DO INDEED have that. That means I am eligible for one of a few different studies using EGF inhibitors. Essentially what they do is inhibit the tumor's ability to form a blood vessel bed to sustain itself. It makes my body fight the cancer from within. Neat eh? If eligible, I will be on the medication indefinitely until whatever may remain is gone.
You might ask, what if there is nothing there when I have my repeat CT scan... well I don't know. I haven't gotten to that bridge yet. If I have a clean CT, I will insist on a follow up PET scan just to make sure because if you recall, my original post op CT scan was essentially negative until they compared it to my initial postop PET scan.
Theresa was sick today. We really don't know what it is/was. She had a fever all day and was listless. If you know Miss T, then you know this is a dramatic change in behaviour for her. She was so tired of TV she actually turned it off. (normally they watch only an hour or so a day or less, depending upon the weather).
Chris and I tried to waken the girls to watch some fireworks but they were zonked OUT. No way were they gonna waken to watch the shows or hold a sparkler. We saved a few for fall when it will be darker earlier.
It's our nation's independence day. Thank you dear God for this country and the priviledge of living here. Thank you also on this very HOT day for the priviledge of good air conditioning. We are blessed with both.
Wednesday, July 2, 2003 12:23 AM CDT
Hello everyone,
This is Sarah's husband Chris writing today. I wanted to let you know that Sarah is getting better day by day. This morning she and the girls did numerous home school exercises. The girls ate it up! It was wonderful to see the interaction. It has been soooo long since Sarah has felt well enough to do this kind of stuff with Theresa and Zoe. I have worked with the girls for many months since the start of Chemo., but there is just this wonderful "girl thing" that happens when Sarah relates to them. It is great to see, and the girls feel better too!
Tuesday, July 1, 2003 8:32 PM CDT
Ah how lovely to wake up and know you don’t have to be irradiated an hour later. The tiredness will be with me for awhile I am sure, but it is so nice knowing I don’t have more scheduled. We continue our regular prayers and I continue to wean off oxycontin. I am currently on 20mg twice daily and will probably hold there for quite some time. I most of all don’t want to get into a situation I was in before of being “behind” in trying to manage pain. That takes forever to get back ahead of it. I still have pukey days but less than before.
Theresa and Zoe are now swimming some underwater, which is a major acheivement so far. Miss Zobo got a coveted two piece suit because of her 3-4 time trips to the bathroom while at the pool. Putting a wet suit on a good sized preschooler is like trying to put toothpaste back into the tube.
Another newbie at the Krauskopf estate is a swing set from Grandma and Grandpa Hughes. What a joy it is to hear them eager to run outside and swing and play imagination games. I showed Theresa how do hang by her knees and although she thought she would NEVER do it by herself, she is now. Zoe is conquering her overly dramatic fear of going down the slide which is no longer than her body length.
Ingrid still won’t call my mom anything but occasionally “mommy”. However, she seems to have dubbed my father with the name of “Barney”. We don’t really know why, especially because she does not watch the big purple reptile at all. It’s cute though, she waves and says, “Hi Barney!” or “Bye Barney” just as clear as a bell.
I have had some back pain this week and was worried about it until I realized I have not taken my regular naps AND I was doing quite a bit more activity than I have in months. Gradually it has been relieved on it’s own before meds were even due. God grant me patience to deal with all this.
Calls for doula work continue and I have been fielding them with caution until I know my next step in the treatment process. I am so thankful for a large pool of local women who also do doula work so I can refer them to a reliable person.
Anyone who lives in the Louisville area, pick up this months “Today’s Woman” magazine (the freebie one) and find the half page article about me and our family. Neat eh?
I wish I could say something profound right now but my mind races between thoughts these days. Mostly they are thoughts about what to get at Meijer, when to schedule meetings, whether to call for a baby sitter, etc, not things of deep significance. Where is Jack Handy with a "deep thought" when you need him, darn. :)
Monday, June 30, 2003 12:11 AM CDT
Geez Louise, I write like someone on drugs. NO, the upcoming scan is not a year away in April. It is JULY 14, sorry about that folks. Perhaps I'll post more later.
Sunday, June 29, 2003 9:44 PM CDT
The last radiation treatment is tomorrow, yay. I still say it has been the most intrusive, tiring and sickening thing I have done. Chemo was no where this sick-making. If you ever have to do radiation, schedule it for afternoon so you can get something done each day and also get some sleep. Doing morning treatments was a silly idea. I had no idea how they'd make me feel.
I look forward to living without that intrusion. My scan is scheduled for April 14th in the morning. I will meet with the doctors later that week. Please don't expect news before the 18th.
Meanwhile, keep up the prayers. As a family we lift up the miracle healing prayer at each mealtime and at bedtime. If you wish to join us in prayer at those times, please do. Thanks
Saturday, June 28, 2003 10:07 AM CDT
Hard to top my last "kick butt" post from the other night. Overall I feel better each day. However I am still prone to normal aches and pains, such as after "swimming" with my girls. I don't really get much swimming in, just catching and holding girls. The two older ones are having a ball learning how to and they really don't like having the water wings on so we don't put them on. The lifeguard has been so sweet about helping them and getting them going.
I'm still not sure if I have gallbladder problems superimposed on the radiation effects or not. I have some pretty classic gb pains but who knows. I'll tell them to pay particular attention to the gb when I have my CT in July.
I am still believing in the miracle. I hope everyone else out there is too.
Thursday, June 26, 2003 8:42 PM CDT
Carcinoembrionic antigen...CEA, the tumor marker blood test used to track my progress or lack thereof. It is the test that has haunted me throughout this cancer trial. Tonight I found our the results of the one drawn on me about 2 weeks ago. I cringed when my nurse told me they were running one on me because I have had no good news from them on the CEA front. Tonight as I drove home from my parents’ home, my beeper went off. I got home and had two messages from Dr. G, my primary oncologist. He was heading out of town and wanted to tell me of my blood results. The CEA was 43.3. The last one done on me in March was about 22. Higher than 0 is bad, lower is good. However he wanted to know if I had had one when admitted to the hospital last month. Unfortunately I did not have one so we have no way of telling if this 43 represents a rise or a fall. My gut feeling tells me it is a falling result and that when admitted to the hospital it was probably higher. Given that I am on WAY less pain medication (half my discharge dose) and feeling immensely better, especially in the past few days, I am believing it is a fall, not a rise. However, it is still bothersome, irritating and maddening to see this number stay high and not be the 2.1 I had last fall. Another thing to put in the discussion of CEA is that they can be off by as much as 40% in some cases and it totally unreliable as a screen in asymptomatic populations. You can get high CEA’s on people who have no cancer and low ones on people with raging cases. They mostly look at the trends. Perhaps I am one who expresses this with less regard to my status.
I am so incredibly tired of bad bad news. I DON’T FEEL THAT BAD! How can I be sicker? I am rarely taking the morphine and on 30mg of oxycontin twice daily which is half the 60mg I was on and used to take quite a bit of morphine and antinausea meds in the day time. This week I have been swimming and even went a couple of days with no nap.
No.... I believe I am doing better and I really don’t give a rat’s ass whether the labs show something different. I am sick of the sad faces and consoling tones used by various people in dealing with me.
I am asking for a very specific thing. Please all of you who pray, all of you who believe your prayers are heard and want to do something concrete for me. PRAY for my COMPLETE healing. Please join me and my family in prayer for this...complete disintegration of the remaining tumor/nodes and an absence of disease in my body. I want a miracle. I am tired of bumming along with one set back after another. I am a young mother of 3 children and a wife of the most wonderfully loving man. I have way too much to do with my life. This cancer crap needs to GO AWAY NOW!!! I would much rather be a positive living role model than some martyr for the cause of cancer. I am not dying of it and I am tired of living with it. I see no reason not to expect and shoot for a miracle and nothing less.
Thank you everyone and thank you God.
Wednesday, June 25, 2003 8:34 PM CDT
Well I am now taking a higher dose of Elavil...let's all pray it rids me of the nightmares. My therapist and I agreed it would help me to try a higher dose for a while and see what develops. I am all for no nightmares. I think Zoe is sharing some of my sleep disturbances. She has been much more clingy and apt to ask for someone to stay with her. Also she is more likely to erupt in a crying fit. It makes me sad to think my children are having any bad effects from this even though I know it is normal.
Big news, my appetite is back at least today it was. I actually ate 3 meals! woo hoo!
Perhaps I will write more tomorrow after I am more rested, today was a no nap day and I am tired.
Monday, June 23, 2003 2:13 PM CDT
Next Monday will be my last day of radiation. It's gone by pretty quickly. My days seem very short of late because essentially I get up, shower, Mom drives me to radiation and we sometimes do a couple of errands and then we return home. This is shortly followed by lunch and a nap for Ingrid and I. By the time I awaken it's nearly time for dinner and then bedtime routine. Sure does shorten a day to take a nap...you sure don't get much done.
I am so very very tired of feeling nauseous (of pukey for those who prefer the earthier terms) and tired. I have very little appetite and it seems to disappear after eating my breakfast. Some days of late that is the only meal I eat and it's usually cereal. Well, I've gotten my weight loss but it's not fun and I can't enjoy it. I am thinking I may be having symptoms of gallbladder problems totally unrelated to the cancer. Golly I am so sick of cancer, y'know it? I think it's time to do something else now!
Friday, June 20, 2003 10:58 PM CDT
Bye Bye grandma K, we'll miss you!
We had a special short notice outing for the two big girls today. Our friend, Miss Donna, came and took them on her husband's company picnic. They loved it and were WORN OUT! The cutest thing happened though when Donna came to pick them up. Ingrid held out her hands and said, "HI Donna!" and kept on saying it over and over. Mostly she only calls her sisters and Chris and I by name. What a cute sight it was. We do love Donna and she has such a way with the girls.
Good day all in all. I like good days. I am just so incredibly tired of cancer and living with it. I pray every molecule of it is GONE GONE GONE! The mere thought of going back for more chemo makes me feel ill lately.
My radiation buddies and I had lots of time to talk today while waiting because there was only one of the normal two machines working. They are all 60-70 years old but we share the common bond of chemo and radiation. It brings the most interesting cross section of life together. Within 2 weeks we will all be done. The first of us finished today.
Amongst a couple of other things, Dr Kommor had a CEA drawn on me last week. (Blood test for a tumor marker). In addition to the radiation center's machine being down, the computer system of my oncologists was also down. Frustrationus maximus. I am just really not wanting to know my CEA at the moment but at the same time I do. Sigh.
Thursday, June 19, 2003 9:46 PM CDT
Sigh, last night with Joan here. We'll miss the live in help. Anyone else want to come? please oh please? :)
Nearing the end of another week of radiation. Next week is my final full week, with Monday the 30th as my official final day, yay. I pray with all my heart that this healing light has killed most if not all of the cancer. I am so sick of cancer. I mulled in my mind today that my life has felt "on hold" for this year as I was hostage to various treatents and schedules. I'm tired of that.
Today I have had some rather ill moments and some very normal moments. Each day I pray that the normal outweighs the bad times. Better living through chemistry. Zofran has saved me a few times.
Theresa is moving along nicely in learning embroidery with Joan. I am so thrilled with Joan's patience as she guides T's little hands.
Zoe has been extra cuddly of late which drives Ingrid nuts and makes her climb up on me also. Zoe is nice to cuddle, Ingrid is like cuddling an octopus trying to get away. Ingrid continues to amaze us with new words and phrases, the latest of which is "FUNNY" as she does some new trick. Silly girl.
We are in need of a dinner this coming Wednesday since I will be at a meeting until 5pm.
Wednesday, June 18, 2003 8:18 PM CDT
Well, I am finally writing again. I have been sleepy early in the evenings of late so I haven't been posting. Things are going all right. I am at 40mg of Oxycontin twice daily with oral morphine, Roxanol, as needed in between doses. I rarely take the morphine anymore. However I keep my trusty bottle in my purse at all times.
Radiation continues at its usual pace. They are great, very very quick. In fact, sometimes I don't even get seated in the waiting room before I am called back to be zapped. The procedure lasts about 3 minutes total, including lining my tatooes up with the lasers. The older two girls have come and seen me do it several times and so has Chris and my mom. I think my mother in law will come with me on Friday. It's pretty nonimpressive for such an effective treatment.
Good news this week! My client who had a term stillborn son last year had a term live born son this week. That is a part of my tiredness, as this birth occurred late at night. I am doing fine now. Baby boy is doing well now and his parents are quite thrilled. It is so life affirming to see and help with a new life. It was a birth I would not have missed for anything.
As life normalizes, I keep hoping to find a good piano education situation for Theresa (she misses it SO much) and perhaps some sort of dance or exercise class for the girls. Mostly I want something where the focus is on dance/exercise and NOT on recitals. I would love Zoe to learn piano also but she's still a bit young for formal lessons.
My mother in law, Joan, is here for a few days and it is so nice. Theresa is learning embroidery from her, Zoe is enjoying a few extra hugs for her ills and fears and Inga has yet another adult to wrap around her busy little fingers. Help is so wonderful. It's great for me since I nap during Ingrid's nap and helps Chris be able to do his work. Our lifestyle is so different that most people we know. We rise when we waken (unfortunately it's much earlier than we'd like that Ingie begins shouting DADDDDY and Zoe comes into our room), we work when we are done with breakfast and have our morning routines done, we eat about 3 times daily and begin night time at about 6pm with bed for Zoe and Ingrid by 630-7pm. School occurs continuously and in concentrated doses as time and interest allow. It is very relaxed and not very scheduled in contrast to most of our neighbors and friends. Our girls don't know what it is like to have to board a bus early in the day and spend the day away, nor do they know much of life with mommy and/or daddy away at an office or place of work every day. Why am I saying all this? I guess to explain how valuable help is to us. We're home aLOT :) To all of you who pitch in as you can, thanks so very much. Even when you think you're not doing much, you REALLY are.
Saturday, June 14, 2003 9:11 PM CDT
New photos!
Big day, Theresa lost her first TOP tooth! Here's the photo to prove it. She was SO excited.
First time our girls partook in sprinkler play in their lives was this afternoon. They LOVED it...so much so that they even "showered" out there with daddy. The pure joy of a child is so precious.
I am continuing to feel well. I have cut my oxycontin dose to 50mg two times daily and plan to go to 40 tomorrow hopefully. With the shrinkage of the tumors I am feeling better overall.
This past Thursday was the FIRST day since I came home from the hospital that I actually felt hungry. I have had no appetite and rarely ate prior to then. It's not a weight loss program I advise. However the past couple of days I have had a good appetite and eaten well with no bad consequences. I am feeling more "normal". yay.
The dresser is a gem and we love it very very much. I feel so blessed to have such a gifted craftsman as my husband. I have not filled it yet, but there is plenty to go in it. So far Chris has indulged me and allowed me to "own" all three of the top drawers in addition to my other 3. He has nothing to go in one anyway, hee hee. Anyone wishing to come and venerate the blessed dresser, please come on over. It's forcing me to keep the bedroom neater.
I hope to sing compline tomorrow night. I forgot to mention, my dear friends in evenSong actually came to my hospital room when I was there, and sang compline for me. What a neat and loving gesture.
Speaking of love, thank you to all who have responded to Father Bill's notice about our financial needs. It is not something that is easy to tell people about. Once again we are awed by the generosity of our friends and complete strangers. I look forward to the day we can be in the numbers of people helping someone else through a hard financial time. It's one of those constant stresses that we all face but to have to deal with it in addition to major health issues it's all that more of a stress. Thank you.
Wednesday, June 11, 2003 7:32 PM CDT
New photos...of the magnificent dresser.
I am a bit tired of being tired but I don't mind if it means cancer cell death. We are still thrilled of the great news of this week's size decrease.
Tomorrow the magnificent dresser comes to live in our bedroom as long as our helper's wife does not go into labor. My what a hard choice. I want very much for her to have this baby, since I am her doula and was her doula last time, but I really really want my dresser in my bedroom NOW! The grand move will involve the movement of 4 other dressers as we key hole it into place. It will be worth every move.
Chris meets Dr. Birkhead, the radiation oncologist, tomorrow. The girls go to see Finding Nemo, the dresser moves...what a big day. I shall rest up now.
Tuesday, June 10, 2003 9:06 PM CDT
I got confirmation today from Gary and Wayne that the 2cm shrinking is "very good" and "rather amazing". Yay, I am so glad. I have needed to hear some good news for a long long time.
Linda, my therapist, and I discussed the Elavil and mutually agree that it is helping and I should continue on it with no change. I am glad I took that step and pray it continues to help. I am so glad to be free from obsessive nightmares and thoughts.
I am tired tonight so that's all for now. Thanks to everyone for their prayers and loving thoughts. We are so blessed by you.
Monday, June 9, 2003 8:20 PM CDT
I have a bit of good news. I am not totally sure what it means but I am taking it as very good news. When I went for my radiation treatment today it took the guys several minutes to line me up. Normally this process takes about a minute. I commented on how my tattooes are not very visible and they agreed (I have teeny tiny prick marks made around the perimeter of my radiation area on my abdomen. Most people would not even notice them). The Sharpie marker outline was only barely visible this morning also (it is supposed to fade). So I told them they could remark me if they wished. They said they would when we were done with treatments. Gary kept trying to line me up with the lasers and the computer screen and then Wayne came back in to help out. Gary said, “Whats making this difficult is her abdomen is 2 cm smaller” because I didn’t want to move and make it harder I didn’t ask at the time but my heart leapt a few inches in response. 2cm! That is nearly an inch, yay. My friend Jo said to think of it in millimeters.....20mm! woohoo, sounds even larger. I pray that this 2cm shrink corresponds to tumor/lymph node area shrinkage. My spirits are lighter today.
Speaking of spirits, I have an interesting anecdote. Theresa and I were watching Candid Camera the other evening and a commercial came on. It was the Zoloft commercial with the little oval blob and the voice over about depression symptoms. When the commercial was over, Theresa said to me, “Maybe you should be taking some of those pills Mom.” wow, what perception. Hard to hide some things from kids. We talked about depression and what it meant and then I told her I was taking a pill similar to Zoloft called Elavil. I am still waiting to see if I think it is working (a reasonable trial of antidepressants is a minimum of 2 wks) but I am glad I made the switch to using something. Dr. Kommor and I have an appointment this Friday so we’ll talk and see what we think. Just being away from the hospital is good and helps the outlook. However, I do still “sundown” a bit. It’s hard to adequately describe. What happens is midafternoon I begin feeling “heavy” emotionally. If something goes badly or not easily, I am prone to cry or get more upset than normal. This feeling gets stronger and stronger and peaks somewhere by 7 or 8pm, then eases slowly until it’s mostly gone by about 10pm. Ergo, the reason for Chris soliciting visitors for me between 4pm and 10pm. I am still quite open to having visits in that time period. Often we have helpers who come and help with dinner/watching kids, etc and stay through bedtime routine of the younger two and leave by 8ish, nearly Theresa’s bed time. It does lessen the emotional load greatly.
Overall I am happy to report that my pain is much less. I am only using breakthrough pain medication about 1-2 times through the day time and often not at all at night. The function of breakthrough meds is to bridge the gap between oxycontin doses (which last about 12 hours). Twice daily dosing with oxycontin is ideal and 3 times dosing is awkward and not as effective. I have finally gotten the hang of it and hope that we can back off this just a little by the end of the week (about half way point in the radiation course of 25 treatments). I am not pushing it though. I think I’ll just know when.
Oh, one other quick update. Remember the massive dresser? Chris is in the final stages of its construction and finishing. The finish (outer coating) is hand rubbed varnish oil which takes several days. It is so beautiful. I will take pictures and post them soon. The matching of the various wood grains and the attention to symmetry is so wonderful. (I am a big time symmetry person). Even the placement of the knobs is just right. I think I shall enjoy many many hours and years enjoying looking at it in use at the end of our bed. Everyone is welcome to come see it in person. This will be impetous for me to keep the bedroom neater also. What a beautiful gift from my dear hard working husband.
Thank you everyone for prayers and offers of help. I have not forgotten you and will get to all of you. If you think I have forgotten, you are welcome to jog my memory. If you get a sudden inspiration of a help idea, please let me know. We are not into the big grandiose “event” types of things but a change in routine is often good medicine. Again, thank you.
Sunday, June 8, 2003 3:32 PM CDT
I think I am beginning to notice some help from the radiation. I am more "drugged" feeling from my various pain meds. Maybe by week's end I can decrease the oxycontin a bit. I am in no hurry to hurt so I am not rushing it though.
I realize now that my napping is probably a side effect of the radiation also. I have taken a daily nap for several days now. Of course it's not always very restful, esp if the girls are trapped inside by weather and therefore rather screetchy. However it does feel good to lay down in bed.
Perhaps by the end of the week I will feel more confident driving myself around. With all the drugs in my system I just didn't think it prudent to do so.
Tomorrow is day 10 of radiation.
I am daily reminded of my own advice to live each day and not worry about the next one. I can do nothing about tomorrow today so I need to just let it drop. Our pastor put a very nice note about us in the bulletin today. I remember his visit to the hospital vaguely through my dilaudid haze and remember him saying he would do that. Thanks Father Bill.
Friday, June 6, 2003 8:35 PM CDT
Today was a day for lots of napping. Thank heavens for Mom and Sue helping out so I could. Pain comes and goes. Baths help as do the drugs. I pray that radiation helps soon soon soon.
Zoe and Theresa have often told me how much they appreciate me being home. I am so glad to have them tell me. Theresa has struck up quite a friendship with the social worker at Dr. Grimaldi's office. I am glad for that. Today she brought home a book to color "for Miss Kim...she needs my help". Thanks Kim :)
My blood count is very good, it was checked today. I don't need more procrit (had a big slug of it in the hospital). I am so eager for the radiation to show evidence of KILLING the cancer. I am very tired of treatments, cancer, discussion of cancer, etc.
Please to all who are offering help. I will get to you. I am just having a hard time trying to decide what will be helpful and what won't. I am so appreciative of all your offers and am slowly getting to calling or emailing all who have offered physical help. To those who have sent donations or Meijer gift certificates, thank you so very very much. Your help is so very appreciated and needed. I have learned so much about accepting help this year. It's hard to do but necessary at times like this.
Please continue your prayers, they are so helpful.
Thursday, June 5, 2003 11:43 AM CDT
Today is going ok, however, I have been informed that a picture on my photo albumn was particularly awful so I have removed it. New photos!
I am in a continual drug fog today. The pain is mostly gone but not all the way despite a big whopping dose of oxycontin, morphine and zofran and an occasional lortab. I have no appetite and things taste funny, so I am finally losing some weight.
Mom and Zoe and I went by my neice Sarah Marie's school to see her final "exam" presentation. She is finishing up at Sullivan at the Culinary Arts program. She and her partner made a fabulous buffet which won the GOLD medal. It was really neat and great tasting too. Zoe wanted one of everything.
Theresa and Zoe have gone to my radiation treatments the past two days. They liked being able to see me on the closed circuit tv. It's not very exciting to see my lymph nodes get zapped to the temperature of 7000 degrees centigrade. I just keep saying to myself as the xray buzzer goes off, "DIE DIE DIE cancer" or "I am being healed of my cancer and the light is working" or similar sentiments. It's hard to keep my spirits up.
I shall nap now, hopefully Ing will cooperate and do so also. Perhaps more later this evening.
Wednesday, June 4, 2003 7:38 PM CDT
....Glad to be back home.... seems like that's all I have been saying. I am. I was weary of asking for pain meds, living the unreal life in the hospital and feeling like I did not belong there.
I am rather overwhelmed by life "on the outside" and have been getting what must be hot flashes alot. They said menopause was a near sure-ity with progressive chemo. I guess it decided to hit along with all my emotional upheaval and turmoil this past week. I feel like I just spun my wheels for a week. Please get this clear--I was not at all rested or at rest in the hospital. I had "less bad days" but no real "good" days. I was bored, lonely and worried about money, my absence from home and overwhelming my dear and helpful care givers at home.
Now I am home, I pray normalcy returns. I am now on an antidepressant and I hope it helps. I can't see any big difference yet. Everyone seems amazed I was not on one sooner.
I have radiation every day at 9am. The sheer volume of daily trips overwhelms my thoughts so I focus on each day singly. I do hope the radiation process begins to help with pain.
I think I am taking less pain med here than in the hospital mostly because I don't take the time to take it. I am on 60mg of oxycontin twice daily and oral morphine for breakthrough pain. I am tired of feeling stoned. I want to feel free to drive. I want to feel able to handle life again and feel normal. I feel so wierd and abnormal.
Please God help me.
Tuesday, June 3, 2003 8:47 PM CDT
Good evening everyone.
Sarah is back home today! Her pain has been reduced enough through medication for her to feel more human. (oxycontin is given at the rate of 60mg twice per day). There is still some pain in her lower back, but it is 5-6 out of 10 instead of 8-9 out of 10.
Right now she is sleeping in her own bed. Radiation therapy is ongoing, and tomorrow will make the 8th treatment so far. (Out of 25 treatments.) The doctors think that the nodes being zapped by the radiation will start to decay and shrink some by about the 10th treatment. Thereby reducing the pressure on Sarah's kindeys and arteries. We need to pray that this is truly the case.
I am very glad she is home! Even though her activity level will not be very high for a while, I have felt this great sense of relief. I missed being around her very much. This last week or so has given me a greater awareness of the struggles single working parents must face.
This will probably be my last entry for a while. Sarah will likely regain her rightful place at the keyboard in the next few days. But I just wanted to say thank you everyone so much for your continuing prayers, heart-felt comments and support for Sarah, me and our little family during this stressful time. We are blessed with so much.
Thank You.
Chris K.
Saturday, May 31, 2003 12:20 AM CDT
Hello all
Remember yesterday when I mentioned that Sarah might be coming home? Well she is not. Not until probably Wednesday. Just after I updated the website, I got a call from her and her good friend and therapist Linda. They had discussions among themselves and with Dr. G., the conclusion being that Sarah's body and mind need time to heal away from the demanding life of a mother of three. And it is also important that she have a peaceful friend or two who could stop in and visit for a while between 4 and 10 pm. Her spirits are down from all this, and Sarah loves being around people.
Sarah is taking an antidepressant right now. I think it is called Elotin. It is a "mood elevator" which should also help her sleep.
Linda Sarah and I talked for a while about our perceptions of Sarah's recovery, and we all agreed that while Sarah is extremely strong and capable of dealing with many things, she needs to be taken care of this time. Anxiety about a repeat of this past Sunday frightens her. (Understandably so!) Sarah is programmed to give and take care of others so it is harder for her to "be the patient".
She also tells me that she feels like a failure and guilty for not being at home with me and the children. And for not being a "good wife." While I really do miss her very much; (We usually spend about 20 hrs/day around each other and the kids), it is most important to me that she allow herself the freedom of body/mind and spirit to let go and concentrate on healing her body of this potentially lethal disease.
I am confident that God is watching over and guiding our little family. I am sure of it because I see the generous help so many of you show us. Theresa, Zoe, Ingrid, Sarah and I love you all very much.
Friday, May 30, 2003 7:54 PM CDT
Hello again all.
Sarah seemed much more with it today. The doctors are weaning her off the IV narcotic and on to the pill form of oxycontin. The whole aim is to manage her pain effectively with the oral meds so that she will be able to come home. The thought is that she may come home Saturday. That is the initial plan. However, she feels the pain coming back as the IV narcs are reduced.(It takes a day or two for the oxycontin to kick in.) And when she feels the pain, it scares her a lot.
Another wonderful side effect of oxycontin is nausea. The oh-I-feel-like-I-gotta-hurl-right-now kind. So she has a good supply of lamodil to counteract the oxy. This side effect seems to be particularly powerful during the first day or two of getting back on oxy.
On a good note, the cancerous nodes have had their 4th day in a row of being blasted with x-rays. I picture in my head the cancerous nodes screaming in agony as their cell walls and DNA are being shredded. DIE NODES DIE!
So, time will tell when Sarah's body feels comfortable enough to come home. I feel for certain that we are on the upswing in this battle.(Kind of like the economy). It will take time for the tens of millions of cancer cells to be shredded and her body to dispose of the waste, but little by little, she will regain her full health!
God bless all of you, and thank you for your support!
Chris Krauskopf
Thursday, May 29, 2003 9:01 PM CDT
Hello everyone.
This is Chris Krauskopf giving you an update on Sarah. Last night she finally got some good sleep. And this evening she seemed more together than the past 4 or 5 days. She is still a little nauseated but things are improving. She may come home tomorrow.
Thanks everyone for your prayers and help. This update is short because I am tired.
Peace to all of you.
Wednesday, May 28, 2003 9:01 PM CDT
Greetings again everyone:
Sarah is still in the hospital tonight. (Fairly well gorked out I might add.) The narcotics are great for relieving pain but bad for sound sleep. She is seriously sleep deprived. Hopefully tonight the trend will be reversed. The nurses are great. Rhonda is extremely friendly and on top of things. Sarah has had no complaints about her and that REALLY says something!!
The radiation treatment went well today. However she had to make two trips to get it completed.(Someone forgot to flip her over and zap the cancer from the back befor wheeling her back to her room.)
The girls are taking it all in stride. The don't like not having mommy around, but they enjoy the company of other people. (So does daddy!) Zoebo seems to be the most sensitive right now. She cries a little more than usual and needs extra hugs. Frequently at night she wakes up crying and wants to sleep next to me for a while. She likes to sleep on mommy's side of the bed.
Daddy is feeling the strain but the help I have been receiving from many of you wonderful people has made a real difference.
Thank you so much Mother-in-law Sue, Sue, Kathy, Donna et al.
Tuesday, May 27, 2003 9:13 PM CDT
Hello everyone,
This is Sarah's husband again giving you an update.
Sarah is doing much better today. (Thanks to powerful narcotics) The pain is still there but much less.
She had a hard night last night because the narcotics cause very stressful and disruptive dreams. (ie not much sleep) She also felt like a failure to everyone because the tumors continued to grow. It is true that we have not had much good news in the past 9 months. Statistically, cancer should not be surviving the onslaught of chemo regimens, let alone thriving! But there is good news if looked at in perspective; the tumors have not spread outside the lymph nodes initally suspected. In my non-medical-but-well-scienced-mind, that bodes well for radiation treatment. The cancer is "contained" and may acutally be totally wiped out with radiation.
Sarah had her first 3-D conformal XRT today. (That is the techncal name for the type of radiation treatment she is getting). She will get another on Thursday and again on Friday.
Once the pain is controlled with medication, she can come home. Hopefully on Wednesday. Radiation teatments will happen daily Monday through Friday for about 5-6 weeks. The pain caused by the tumor pressing against soft tissues should begin to gradually subside in a couple of weeks as the cells are killed.
Die cancer die!!
Thank you all, and God bless you too.
Monday, May 26, 2003 1:00 PM CDT
Hello everyone:
This is Sarah’s husband Chris. Sarah has not updated things in a while because she is currently in the hospital. During the past week, she began to have lower back, kidney area pain, (right side). Well, on Sunday after a day of excruciating pain, she went to the Baptist East ER and had things checked out. After x-rays and an abdominal CAT-Scan, the cause of the pain was finally found. No it wasn’t a kidney stone or a UTI, it was the cancer. The nodes have GROWN about 15% larger (collectively) while Sarah has been on Xeloda. One of them is pressing hard against the right kidney giving her the classic symptoms of a UTI.
Strike three on Chemo! Time for a new batter!.... Enter, focused radiation therapy. About 5-6 weeks worth administered daily. The cancerous nodes look kind of like a cluster of grapes and the Radiation Oncologist seems to feel confident he can aim well enough to avoid much collateral damage to the kidney. The whole area is approximately 11 x 7cm.
Sarah will be in the hospital for a few days for some R&R. (She has had very little sleep lately) The cancer cannon treatments begin tomorrow.
Stay tuned, I’m sure that Sarah will fill you in on the details when she gets back in a couple of days.
Thank you everyone for your love and support. We are continually in awe at the generosity and kindness each of you gives our little family.
Sunday, May 25, 2003 11:53 AM CDT
Very nice visit with my mother in law. I am so glad she was here to help out. It was so helpful. We shall miss her very much but I bet she'll love the sleep she's gonna get at home :)
Back pain is back. I hurt alot intermittently. It makes me want to cry and cry. I feel like a nuisance and a disappointment to my friends and most of all to my family. My girls must think I don't love them anymore. I am very very tired of drugs that make me more and more tired. I have no patience.
Please, please, no offers of "just let me know what I can do..." I simply have not the energy or inclincation to think up things. It only makes me feel more useless and disappointing. If you want to help, tell me, my husband or mother what you are going to do and when. Thank you.
Tuesday, May 20, 2003 10:08 PM CDT
We are so enjoying having Grandma K here to help out. Thank you so much for lending her to us, Grampa K. I actually feel quite well of late so I keep busy and I think I amaze Joan. Honestly, when I feel bad, there is no doubt, but when I feel good I just hate to waste any time not doing something.
Poor Ingie has the snotty nose. It greatly impairs her ability to suck her trusted thumb. Hopefully tomorrow there will be a bit less snot. We're all tired of chasing the baby with the "nose EW".
I went to drop some things by my parent's home today and decided to lay down for a few minutes.....2 hours later I woke! eek. It was so nice to have a quiet place to rest.
Tomorrow, Chris and I hope to spend the night away from home. OOOH what a pleasure to possibly waken with no yelling, no little voices at our bedside announcing the need for bodily functions. I shall miss them. I always do, even when I am just away for a few hours. I guess that makes us real parents.
Dr. G called at home last night. We discussed my plan of care and I get to stay away from the CBC office until Tuesday for a blood count. I shall be so very glad to be DONE with finger sticks someday. I am so ready for good news. I restart the Xeloda on Tuesday after I get my blood results. I am feeling much better on this chemo than any other previous type. I pray, please God, make this be the one that works.
Saturday, May 17, 2003 3:16 PM CDT
When I married Chris he promised me the moon and stars. He still delivers on that promise. Anyone who knows Chris knows he is an astronomy buff. We viewed most of the lunar eclipse the other night. MUCH more impressive than any solar one I have seen. I enjoyed really being able to see the depth and shape of the moon through his comet finder binoculars.
Chris is in the basement with the girlies. He is so much more patient than me. He is also a gentle and inspired teacher. I am awed by how much they know and naturally he teaches them. We are blessed.
Friday, May 16, 2003 1:37 PM CDT
Yesterday went all right. The girls had a great time with Grandma and the various day helpers. RuthAnn has a good connection with them and Miss Rose was such a special treat to have over. Thanks to Nikki and Alan who have once again come in to help at the best possible time.
The purpose of my visit to the Sarah Cannon Cancer center was to introduce me to them and to I guess let them assess whether I am a nutcase or not and whether I understand participation in a Phase I research study. Since I used to be a conductor of clinical trials I am quite well versed in them. At this immediate time I am not going to change therapy. There is a very real possibility that the Xeloda therapy may be all I need for a while. However, eventually I may be in need of further treatment and that is where the research trials come in. They will be testing my pathology specimens for the presence of specific antigens so they can tell if I would be eligible in one of several "Epidermal Growth Factor" inhibitor studies.
Overall I was underwhelmed by my experience yesterday. Travelling in a car is not comfortable for me and doing it for 6 hours in one day is especially not fun for me. Meeting in person for what could have been accomplished by a phone call and transfer of CT films, etc is also irritating. I hate paying money and time needlessly. No I don't think they are bad doctors, quite the contrary, I just don't think I needed to do what I did yesterday. I think it would have been fine to do it when and if I really needed to. Wasting my time is always frustrating to me.
It was good to return home. Most of you have no idea how much that sentiment means to me. I spent nearly 12 years in a very unhappy marriage prior to my current one. Nearly all that time, I yearned to be away from it. I never looked forward to being home and often sought to be away from it. So when I say I enjoy my life here, I REALLY do mean it. Hearing Ingrid's enthusiastic "DAAAADDYYYYYYY" ring out is music to me ears.
I feel pretty good today. Occasionally my fingers, eyes, and mind all work together. At those times I try to write and to manual dexerity work. I made two skirts today, one for Theresa and one for Ingrid (it was supposed to be for Zoe but I made it toooo small). Theresa is learning to sew by hand. She is so absorbed in trying to be like Laura Ingalls. She had been driving me crazy asking to learn to sew. So far so good, her little purse for Zoe is coming along nicely. I am so not patient with helping. Luckily she has picked it up easily.
We get to see Aunt Linda, Sarah Marie and Uncle Kent tonight, yay.
Wednesday, May 14, 2003 12:41 AM CDT
New photos!
One of my tumors may be a bit smaller. It is the only one I can feel myself (on incision line). Pray it is so, thanks :)
Monday, May 12, 2003 12:11 AM CDT
Other than feeling pukey and needing a daily nap, I'm ok for now. I sewed a footed jammy for Ingrid. Hey this is fun.
Only a week till Grandma K comes! Oh, if you are reading, Grandma K, Ingrid can say it now :)
Thursday, May 8, 2003 9:44 PM CDT
So far so good on the Xeloda. We got word from our oncologist's office that the timing on the payment assistance plan for the med will probably be Ok'd by the pharmaceutical company about in time for me to be done, grrrr. We are persuing it but I doubt it's gonna come in in time for us to get any price break, darn.
I have an appointment lined up for a week from today (Thursday) in Tennessee with another oncologist, the one at the Sarah Cannon center. I was happy to hear I could get right in. I pray there is some trial I qualify for so I could hopefully get some adjunctive type therapy going for this cancer stuff. I am also looking into highly focused radiation therapy.
So, I need a helpful babysitter for the girls while Chris and I go to Nashville in a week, otherwise he will stay and I will go alone. He has to get certain projects DONE and my silly appointment schedules are getting a bit invasive on our time for him to work.
evenSong rehearsal tonight. Everyone was so tired. I pray all goes well at our concert the night after tomorrow. Anyone who doesn't know, it is May 10 at the Cathedral of the Assumption at 8pm, 10$/adults, 5$ Seniors/students. We are blessed to have an amazing pianist, Harry Pickens, who will be doing improvisation on our themes in each section of the concert. He is truly amazing. It is going to be a fantastic concert.
Mom and I are making bread tomorrow, anyone hungry? :)
I made the cutest circle skirts for T and Z today. They are nearly neon yellow. I'll post a pic on the site some day. They are purely for fun wear. I love love love my new sewing machine.
Tuesday, May 6, 2003 8:50 PM CDT
I keep meaning to mention it, but
My hair is growing back. All the same color, etc, but MUCH more of it. Hallelujah!
I keep also meaning to mention this.....
I would love some assistance in printing and making this journal look pretty in a book form. I want a keepsake for myself and family. Anyone good at scrap booking etc? I am so completely overwhelmed with even the mere thought of scrapbooking.
Tuesday, May 6, 2003 6:15 PM CDT
My stupid experiment with decreasing my oxycontin is officially a FAILURE!!! I called nearly in tears, to the oncologist asking for more oxycontin in a higher concentration. The nurse was a gem, she just said, "GREAT!" and got it filled. Of course, since it is a narcotic, I had to go in to get it, etc... BUT I am feeling about 65% better and looking forward to 100%
Well, rain has been deluging lately. I am glad it waited until I planted. Hopefully the garden will get planted this weekend.
I think I am becoming officially perimenopausal...oh joy. I get HOT alot.
I have a feeling my blood count has dropped, I am more fatigued this week and short of breath. It was 37 on Monday last, I bet by Thursday I get a procrit shot.
I can't wait until my mother in law, Joan comes! It will be so nice to have some live in help. Today my mom came for a while, ferried me to and from the doctors' office and Meijer and helped corral the girls so I could nap.
Dear God, thanks for help.
Sunday, May 4, 2003 8:54 PM CDT
I'm ok of late. I just don't feel like writing when my vision is blurry. I wish there was a really good pain med that didn't snow me.
I planted marigolds and roses this weekend. Also, we planted some banana peppers and hollyhocks. Theresa calls it our Enchanted Garden. She loved the Secret Garden :)
I begin my new chemotherapy tomorrow. Woo HOoo! I am glad not to have to be hooked to an IV to receive it.
Ok, gross, but graphic detail....
considering all the morphine I take, the primary side effects of Xeloda, well....are ok with me....... ha hah haha.
Saturday, May 3, 2003 9:48 AM CDT
I am so sorry I have not written sooner. It is extremely difficult to type a cogent sentence when your fingers are willing but brain is not. The drugs I take often gang up on me and make me somewhat crosseyed and extremely drowsy, especially at night.
So, on to the Sarah Krauskopf news and commentary, brought to you by the sleep number bed.
I went to see the oncologists Thursday. They were especially behind in seeing patients that day. It bugs me to wait but I know that they are truly taking the time to be very much “with” their patients and this does not bother me a bit. When you are with the doctor, you feel like you are the only patient there.
First, as noted yesterday. The lymph nodes (hereafter referred to as tumors because it’s quicker, but please know they are not new tumors but rather lymph nodes that were invaded by the adenocarcinoma of the colon) are a teeny tiny bit larger. We are talking 0.3mm, not 10cm, ok? There was a bit of confusion as to why my CEA was drawn when it was and why I got a CT scan when I had not finished the oxaliplatin. Doesn’t matter now, cat’s out of the bag, we know the oxaliplatin was not doing the job for me. In strictest technical terms, I failed oxaliplatin therapy. Ok, so what next?
After discussion with Dr. Grimaldi, Scullin, Joseph and Dobbs, it was decided to run it by Dr. Hainsworth at the Sarah Cannon Cancer Center in Nashville. My oncologists work with that private center. The concensus was to have me go on oral chemotherapy with capecitabine (aka XELODA). I will also have a consult at the center in Nashville for potential enrollment in a very very new drug trial.
Xeloda is an oral form of 5FU (a drug I have been on since Sept). I take it 14 days in a row, 7 pills daily, and am off a week. That is one cycle. I will repeat it several times. It appears to be quite bioreactive and very promising in colorectal cancers (THERE! I finally used the whole name coloRECTAL--ugh--well that was a battle in itself). I begin on Xeloda on Monday. It is mucho expensivo. The pharmacist just wanted me to know that the bottle of pills (about 1.5 cycles worth) was over 3000$ !!!! yikes. Yes, I know it costs that much, but it beats the alternative. Insurance will cover a portion of it and the rest is ours to enjoy, ugh, again. Primary side effects? Nausea (get what is new?) and diarrhea (ugh AGAIN, why me?). I have lots of drugs for both. Oh yes, and once again, I get yet another version of Plantar/Palmar syndrome consisting of itchy, swollen, red, peeling hands and feet. Hopefully it will never get to this, but the potential even exists for blisters and infection-lovely eh? So I will be very aware and report asap.
How do I feeeeeeeel? I am so very VERY sick of that question. I am tired of a daily report of my symptoms and ticking off of how many episodes of nausea, diarrhea, etc. I feel glad there are other drugs I can try. I feel happy that I am not dying. I feel sad that my girls and husband have to endure me feeling like crap. I feel mad that I got cancer and irritated that, as Sharon Osbourne (Ozzie’s wife) put it, I have cancer of the bum....how unglamorous. I feel concerned about money often but somehow also quite blithe about it. Heck, once your bill spills over the 10,000$ mark, you just gotta laugh. SURE, go ahead, BILL me....why not? Join the crowds of people getting 30$/month from our family. You just gotta laugh. It’s silly. Oh, and in case anyone wants to know....we have NO credit card bills and plan on keeping it that way.
A good note? I finally, yes FINALLY got an EOB (statement from Blue Cross) that they FINALLY paid my original hospital bill, with the exception of the fee for a private room, which I requested. Nearly 100% of the bill. How much? just shy of $19,314.50. It’s about time. Thanks for your help, sister Joanie.
Another good note? We are in love with our new/used minivan. Interesting that Theresa decided to name it Minnie Pearl. She decided this Wed night. Thursday I found our who Sarah Cannon was (remember? the private cancer center?) She was Minnie Pearl. Cool eh?
So that is it for the news. Let the emails begin. Oh while you are emailing, if you would like a list of what helps us and what doesn’t, please let me know.
I love you all. Thanks, for everything.
Friday, May 2, 2003 8:32 PM CDT
No, the cancer is not gone. Not vastly bigger but not smaller, damn. I will post more in a day or so. My vision is too blurry from pain meds to type much.
I will begin a different (all oral) chemo regimen on Monday.
Wednesday, April 30, 2003 9:53 PM CDT
A last minute plan: to go to the wharf and see the end of the steamboat race. What a great evening for a spontaneous plan. See the photo on the albumn page.
I marveled at how fantastic I felt this afternoon. NO PAIN, no where! I am just uncomfortable now. I took my pill this evening but am doing much better than in the past few days. I'm eager to hear what's up tomorrow.
Wednesday, April 30, 2003 2:34 PM CDT
Thank you to everyone for prayers. I see the oncologists Thursday (tomorrow) at 2pm. I shall report after that. Gee, there are several folks who have signed the guest book who I don't know who they are. What an amazing thing, this internet. Thanks to even folk I don't know. Please feel free to email me privately if you wish to tell me who you are :)
The pain comes and goes. It never goes all the way away, darn it. I am beginning to think I did some injury on Sunday, what with making 6 loaves of bread, sod busting a small plot and then going singing that night and being so FULL of energy. Monday I felt like a big ole Japanese fish....you know....CARP? ha ha
I am thinking more and more how the theory of cell death and release of hormones doesn't sound that far fetched. I pray it is that case with me. I can't figure otherwise why my count would have nearly doubled in 2 weeks. The chemo I am on is really high grade stuff, it's better than RoundUP! (I am trying to talk as positively to the drugs as possible, you know, not offending them by calling them poison, ha ha.)
I got two new roses today, I can't wait to plant them. They are miniatures--one is white with red edges and one deep purple pink.
OH OH OH OH, GOOOOOOOOOOD NEWS ALERT!
Yesterday we got a new/used van!!!!! Yipeeee! I am so thrilled. It is the EXACT model I hoped to get but figured was way way out of our price range. It is a deep black cherry color called "courant". We got the older model of Honda Odyssey==the one with regular doors and windows as opposed to sliding doors, sorta like a grown up station wagon but more useful. I love love love it! The neat thing is Chris does also! Thanks God and Sam Swope :)
Monday, April 28, 2003 8:13 PM CDT
Each day is a new ride on the cancer train. Today I was to have chemotherapy. However my ANC was still under 1500. Additionally my CEA (carcinoembryonic antigen) came back. This is a tumor marker which is used to track progression and regression of certain cancers. At the end of treatment with my old regimen it was 13, up from 2.1. This past Monday it was drawn again. It was 21.6. When my nurse showed me this today I just cried. I felt so incredibly upset. I begged to be allowed to do chemo. Not gonnna happen today.
Mom was with me and a while later we finally saw the doctor. Dr. Montes (one from last week, very very nice man) explained that although this was markedly elevated it could be what is known as tumor lysis syndrome. What happens in this scenario is that the cancer is being killed (lysed, or broken open) at such a rapid rate that it releases huge amounts of the CEA into the bloodstream, making it look like a progression pattern when in fact it is the opposite. He said what usually happens is a sharp increase (as I have experienced) followed by a quick drop. PLEASE, PLEASE,PLEASE, PLEASE pray this is the case. I am so incredibly ready to hear some GOOD news, REALLY good news, not moderately but truly GOOD news.
On the pain front... I now take 30mg of oxycontin daily over the course of a day. I am beginning to regain control. I am weary of pain.
That is all for now. I have a CT scan tomorrow night to see if the tumor areas are bigger or smaller. Of course you know what results we want. Thank you everyone for your prayers.
Saturday, April 26, 2003 9:01 PM CDT
"....and Mary kept all these things and pondered them in her heart...."
What an interesting weekend. A dear friend invited me to join her at the Anne Graham Lotz (daughter of Billy and Ruth Graham) women's conference this weekend. As I put it to Chris, it is not something I would have independently chosen to attend but I am glad I chose to accept the invitation. My mind is still actively distilling the information and messages but I will probably bring more out over time. She is a gifted speaker and a joy to hear.
According to the email Theresa sent me, the girls had a good time with daddy despite my absence. I am so very thankful for such a kind, gentle man as my husband. I never fear for their safety, care or love with him.
As I returned tonight I reflected to Chris.....in my former marriage, rarely did I look forward to returning home. In fact, I dreaded it more and more as the years went on. In my current marriage I revel in the knowledge that I am allowed to enjoy the simple act of coming home, be it from treatment, a day's outing, a week away (which, by the way I have NEVER had) or an over night away. I love returning home to my dear dear husband and our children. I feel so blessed.
Thursday, April 24, 2003 7:45 PM CDT
New arrangement of photos and some new ones! This is fun.
Our dear friend and midwife, Ruth Ann went to the library storytime/Ingrid wrestling match with us. It was great to have the help.
Theresa and I are working on a book idea to give to the social worker at our oncologist's office. T wrote essentially the whole shebang while we watched the news tonight. She has a lot going on in her head.
As noted on the photos, Theresa had a special treat last night. A friend of mine took her to see the theatre presentation of Beauty and the Beast. She was enchanted I think. She was soooo tired last night, as she returned at about 1130pm. She is usually in bed by 8pm. She slept until we woke her at 1015am today. She asked tonight if she could sleep in again tomorrow.
Our newest quest is for a minivan. While all of you are praying for my cure, put in a word for a minivan. We are nearly ready to find a good used one. Yay rah for some travel space. If we get a good enough deal we can take our time selling the VW. Anyone interested in a honey of a Passat, lovingly tended since "birth"?
Tuesday, April 22, 2003 8:50 PM CDT
Neat Photo eh? It was a major accomplishment Easter morning to get all three in one place, looking the same direction for 10 seconds! I just love their expressions.
Not a whole heck of a lot going on today with us. However my mom officially now has pneumonia. I told her she was not cooperating in the "let's all pity Sarah" game. Now that she has a real diagnosis she can get well. Prayers are always appreciated. I need her well and I am sure she would like that also.
One of my dear clients brought us a fabulous dinner tonight. It was so good to see her and the little girl I helped bring into this world. Such a sweet little baby. Even though I am feeling pretty good this week, it sure is welcome to have a dinner brought in from time to time.
For the first time in a while, Theresa and I "did school", meaning we used the formal books we bought to use. Most of the time we are very free form and use very little published curriculum. However, it is nice to do something from a book every so often. Less work for me! Interesting thing happened, Zoe sat down with us and asked to also "do school". So I made her traceable letters and words. That girl now recognizes all the letters and only mixes a couple up on identification (reads N as Z, which is pretty understandable). It was nice to see them both taking an interest in working in the same space. I'd like to say Ingie was right there cooperating and playing quietly but she was NOT! She was whining, yelling and grabbing. She is so very busy. I put her down for her mid day nap at 1030, about 2 hours before normal. So, needless to say, she was wiped OUT by 630pm tonight. I do hope she sleeps all night.
I plan on it after last night's continuous nightmares.
Monday, April 21, 2003 1:29 PM CDT
Well let me see, my Hemoglobin/Hematocrit was 12 and 38 today which is good. The iron and procrit shot are doing their jobs. I continue to feel well. I saw the doctor today for my routine visit for chemo. He informed me there indeed is a lower dose of oxycontin, yay, so I got an rx for it. I told the nurse that nausea continued to be my primary problem besides tiredness. She gave me a huge supply of samples of Zofran (what a dear....that med is very very expensive).
I did not get chemo this week. My aboslute neutrophil count (ANC) was under 1000. They like it to be above 1500. So I will wait a week for it to rise to a level at which it can be knocked down again.
I really liked the partner I saw today, Dr. Montes. Vice nice Columbian man.
They drew blood for some other tests including a CEA, carcinoembrionic antigen, or tumor marker test. I should know some results by the end of the week. I am very curious.
Friday, April 18, 2003 9:25 PM CDT
Another "good" day. Everyone is feeling better overall. Coughs still remain all around but not like a couple of days ago.
Interesting development that I pray is due to blocked sinuses... I can't really smell or taste much. This can not persist. Enjoying eating is too important to me.
I do appreciate my good days more and more.
Last night as we snuggled down to bed, Miss Zoe told me, "Your cancer is all gone Mommy" I asked her how she knew this, in usual 4yo form she replied, "I just know it" God bless her. I pray she is correct.
Thursday, April 17, 2003 9:40 PM CDT
Well, I woke to the sound of a lovely gentle spring rain. Chris and the girls were sitting in the dining room, with the door open, listening. Nice scene.
I ran out of gas mid day today.....sigh. About 2 hours after I went to bed, I woke up, rather confused as to what day/time it was. Day time sleeping is not normal for me. I keep trying to view it as positively as possible and am truly glad when I have the opportunity to do so. I wish it would translate into feeling better but mostly I feel kind of out of whack when I waken, and just look forward to bed asap.
Mom says she feels better, so does Dad. So, why do I have the awful cough now? We have not been in contact since Saturday. It's so lovely to sound like I have TB. I am just so tired of drugs...something for pain, something for nausea, something for sleep, something for digestion, heartburn, anticlotting, etc.... blah blah blah Ginger.
It's Holy Week. Easter is Sunday. This has been a Lent of a trial I did not imagine. I keep wondering what I have learned. I do know we are blessed with many friends who have helped in numerous ways. To all of you, thank you so very much, we are forever in your debt.
Wednesday, April 16, 2003 11:49 PM CDT
Sorry, I keep forgetting to mention... new pictures :)
Wednesday, April 16, 2003 10:54 PM CDT
Today a couple of fellow homeschoolers came to help out. They are 10 and 11 years old, I believe, and very helpful. It was nice to have someone who would play with the girls, help corral them away from Chris so he could work, and let me actually enjoy doing an activity with my older girls instead of dread it. (I am so not good at doing "activities" like cooking or crafts with my girls, I get really tense and try too hard to control it too much). Chris said one of Theresa's special thank you prayers tonight was for making cookies. SIGH... that made it all worth it. I am REALLY working on creating good memories for the girls. No matter what happens with me, they should always be able to remember special, fun, loving things.
We got an ice cream and took a quick drive through Audubon Park, a local neighborhood which is a designated bird sanctuary. They have gorgeous old plantings of dogwoods, in particular, which are highlighted this week in a festival. Quite spectacular.
I also had a chance to speak to a fellow mother in a very similar stage of colon cancer tonight. I am picking her brains for dietary supplement assistance. She is a registered dietician. I am VERY open to complimentary medical options if anyone has local suggestions of nutritional or other therapeutic modes, PLEASE feel free to email me information. Tomorrow I am off in search of a few of the things mentioned to me, and await a letter from this woman with details of more. I want to see a NORMAL CT scan some day, hopefully sooner than later.
I hope to post a thing about help for us soon. Sort of an idea of what works, what doesn't, etc. Hopefully it will help those who just want to do something but are not sure what to do, etc. I keep wanting to write it but keep either forgetting or putting it off. More later.
Tuesday, April 15, 2003 9:17 PM CDT
Today was a GOOD day. No need for meds all day, whoooeeee. I really feel better when I take nothing. My mind is more clear.
Last night was rough, not so much for me, but for Theresa. She woke up with her ear hurting. She has not been herself for several days. We have all shared some sort of viral cold thing this past week or two. However her cough has lingered more and been of a different quality. Ever since babyhood she has tended to get an asthmatic sounding reaction to colds and the like. However, since she didn't wheeze, we never got treatment specific for asthma per se. She tends also to get this reaction to allergic triggers, esp early spring pollens. So she is back on her nasonex and zyrtec and is getting Amoxicillin for her ear which is infected. If her cough doesn't improve greatly her ped is suggesting we try some asthma type treatment also. While I am not desirous of this diagnosis, I am glad he could detect what I have been woondering about for years. So, time will tell.
That said, we went from the pediatrician's office to a local park to meet up with a friend and her son for a brief visit. The girls loved it even though it was unseasonably warm. I have such low stamina and tolerance for heat that we cut the visit pretty short. However we did get to walk the nice pathway though it and beside a creek. I had to carry Ingrid much of the way since I forgot the stroller and she was not inclined to stay near us. So, I am a little sore but not intolerably. It was nice to connect up with this friend. Nice to do "normal" things.
Tax day today. We have long since gotten our return more than a month ago. I am so thankful for a husband who values getting this chore done and out of the way asap.
Monday, April 14, 2003 9:30 PM CDT
Well, I went to bed about 230pm because I as so tired and nauseous. Chris and the girls woke me at 430pm wondering about dinner plans. Chris took a look at me and said he'd take care of it. Thank God for such a great husband. I finally managed to crawl out of bed to take a zofran and do bedtime routine with the girls about 545pm. My poor lonely plate was so sad to see there at the table.
It's times like this that I get sad. I worry that my surrendering to the wiped out feeling is a bad sign. However it could be a good sign meaning the chemotherapy is effective. It's hard to feel upbeat when you feel pukey and worn out much of the time. I just give into the feeling now, instead of trying to keep it up.
I hope I have the energy to watch 3 girls at the park tomorrow so I can see my friend I haven't seen in years.
Sunday, April 13, 2003 9:09 PM CDT
Someone gave me some advice today that seems appropriate. Live in the moment and look for signs and react to them. Something like that. Anyway, I think I am getting the "in the moment" thing by default. Pretty hard to live in the future or past when you feel like barfing right NOW. Looking for and being alert to signs has become very interesting. I know I shared my inner feeling that this cancer spread had not gone away a few weeks ago. I am hoping that the "sign" of feeling so icky these past few days is a good one in that it means the chemo therapy is being effective. My hands still react to cold, though not as strongly as the first couple of days. Even so, I must cover them to pick up anything from the refrigerator or freezer, especially if my hands are the least bit wet. The cold in the throat thing is manageable if I use a straw.
What I would like now is a sign that I can get off the oxycontin. I am very tired of being on it, knowing I am taking something very strong which affects my sleep, dreams, and daytime functioning. It so completely takes care of my pain that I keep wondering if it is still there or not. However the fear of going back onto the med if I go off is enough to keep me on it for now. The scary dreams are really getting to me though.
Compline was nice tonight. We (evenSong) are planning another concert May 10, mark your calendars. It will be at the Cathedral of the Assumption. The theme is Caritas Abundat (Love Abounds).
All of us in our home have passed around a cold and now my mom seems to be the sickest from it. Spare a few prayers for me tonight and pray for her. I need her help too much for her to be really sick. Besides that, she should feel good just because I love her.
Friday, April 11, 2003 9:40 PM CDT
Several visitors today. It felt a bit like Grand Central Station. Finally a nice, warmish day. I was cold all day but it was pretty. We got the peas, spinnach and bibb lettuce out in the garden. Mostly I just got worn out. No stamina. That is demoralizing and depressing.
Gee, sorry to sound so down. We've been dealing with coughs and a cold around here and that added to chemo stuff just wears me out.
Everything here in Louisville is all about the opening of the Derby Festival, Thunder Over Louisville. I can't wait until our girls are just a bit older and we can go to this again in person. It's quite an event. I am so glad it will be pretty this weekend. Being outside helps alot.
Thursday, April 10, 2003 10:13 PM CDT
Yes the pain is better today. I am going to try the oxycontin every 12 hours instead of every 24.
I am breathing a big sigh of relief as a big mental weight is being lifted from my head. I had a photo shoot today for an article to appear in a local magazine in a month or so. It all worked quite nicely and quickly. I had no idea how anxious I was about that.
A friend and I went to lunch today. I so appreciate getting out and being able to talk freely. Most of the time I weary of talking of cancer and my plight. I don't want to talk of it all the time. It gets old and boring.
However, a moment of chemo comic relief, please.
I'm litterally just on pins and needles all the time around here now, har har har (the primary side effect of oxaliplatin is peripheral neuropathy with cold contact). Ok, bad joke.
Sometimes I get caught up in this and think, "I am just not at all ready to give up." Please pray.
Wednesday, April 9, 2003 10:11 PM CDT
Tonight I am weary. I am weepy. I simply have too much to cry about. Hard to even know where to begin. I have not cried much through all this.
I don't feel like a good parent when I feel this way.
Please pray for pain relief.
Tuesday, April 8, 2003 9:29 PM CDT
Although I am weary with pain in my back and sides and down my legs despite an early dose of oxycontin, I am feeling hopeful. Hopeful that my newest venture into chemoland will be more successful.
Today I experienced the peripheral neuropathy (side effect of Oxaliplatin relative to cold) in my hands. WOW, dramatic. Mom and I did a trip to Wild Oats after chemo. I went to pick up a package of tofu from the refrigerator case without thinking. ZING! electic shocks all over my fingers! It was like something from Star Trek. Like the pins and needles sensation from being numb but much stronger. Pretty darn dramatic. I still bought the bean curd,but I did wonder with dark humor if God was telling me it's wierd food, hee hee hee.
I am aching all over esp in my back. So, I took oxycontin early. I think I will even take some more Lortab at bedtime with my ambien. GEEEEZ I am a druggie. Well, it is necessary, not recreational for sure.
The girls LOVED having some big girls here to play with today. I am looking forward to developing some lasting relationships with these girls for our girls. God sends us just what we need when we need it.
Speaking of that, circumstances have allowed me to get a new sewing machine today. Hooray. I can't wait to make some more skirts and some Easter bonnets for them. God is good.
Monday, April 7, 2003 8:55 PM CDT
Round number 2 of the new chemotherapy begins tomorrow. Last dose, I experienced mild versions of the neuropathies known to exist with oxaliplatin. I shall be interested to see if these stay the same. The first round went ok and I really didn't feel that bad. I know, however, it is cummulative.
I have many questions to ask the doctor, #1 of which is "Why did the lymph nodes get small at first and now bigger?" I have no idea. I really don't know much about oncology.
I am anxious to get this whole thing working. It is throwing a wrench in my plans to get on with life. I don't feel like I am dying, so therefore I am not. It sounds wierd but most of us experiencing chemotherapy actually welcome the symptoms from the drugs because it is proof something is "working". I had plenty of symptoms, especially in the last 2 cycles of the Saltz regimen, but it apparently wasn't working by then. Or, maybe it was but the cancer was not that susceptible to the chemo? I don't know. I have some people I am speaking to about various alternative therapies. I really wanted to do more of "other" things but chemo was thrust upon me so quickly after surgery, and what with kids, holidays, etc... I just never felt I had the time to research it. Anyone with information for me is welcome to send it.
Both the older girls prayed tonight for the chemotherapy to work this time. I think God hears them especially well.
Sunday, April 6, 2003 9:55 PM CDT
Greetings from the house of angst. I wish to pick a bone with the brilliant person who dreamed up the idea of daylight savings time and send him my kids for a week while they adjust. We only realized it was time change day last night at 10pm, eek. I had to cantor for 930 mass so it made for a very short wake up and adjust time this morning. Zoe, who is a very early riser anyway, got up at her usual time, which was now an hour earlier. By noon she was soooo grumpy and wailing at everything. Theresa was not helping things by egging her on, grr.
Tonight, I came home from compline to see a sweet note at Zoe's place from Theresa apologizing for being mean to her today at Grandma's house. There is a God, she has learned.
Saturday, April 5, 2003 1:42 PM CST
New photo on the photo page. We had craft day at Miss Tara's. Theresa sent me a cute love note the other day saying, "I love you as if you were Miss Tara" Wow, what a compliment. By the end,Tara and I were mostly the ones left paper mache-ing balloons. They look like a scene out of Cocoon in her garage as they dry.
I think that I am breaking through the oxycontin with pain but am a bit too fearful of side effects to take anything more. Alas, I am a fair flower, not a good drug addict.
The girls are a bit fearful that our backyard squirrels will eat up all the sunflower seeds we planted for our teepee. There were several digging holes in the area this morning. I hope they stop.
I'm mentally gearing up for the next round of chemotherapy this week. Luckily a new avenue for help has opened up in the form of some home schooled girls who are interested in getting their merit badges for girl scouts. I think it's interesting to see how help comes just when you need it.
Thursday, April 3, 2003 1:33 PM CST
Oops... too much time in the labor/delivery ward...
I meant perennial. So, anyway, we planted fairy rings and a sunflower teepee today. Let's all hope and pray they grow as planned.
Thanks to RuthAnn for the fun day at storytime and lunch today.
Wednesday, April 2, 2003 9:58 AM CST
I can't decide if this new background is too frenetic. I just like changing things every so often.
Ah, a gorgeous spring day. The girls are going to go play at a friend's home for a while and I'll get a bit of time to myself with Ingrid in bed. Yay. Nearly time to get the garden in and to uncover all my perinneal plants who are peaking out of the ground. I love this time when it's too early for bugs and too early for real heat.
I'm finally over my brief stint into pain med weaning. What a mistake. I honestly can't see what the hype is about taking this particular drug as far as glorious side effects. Mind numbing nausea and dizziness just don't seem all that "fun" to me. Luckily the pukey feeling is mostly gone now. Unlike most meds for pain where you have a little breakthrough or reminder of the pain, I feel NONE on this... even my chronically sore shoulder/neck area is feeling good.
Last night I had a delightful time with a friend, Angela. We spoke to a class at U of L, then enjoyed a lovely all adult dinner, complete with a too big dessert and then went to a concert at the Cathedral. The concert was by a group called Liber Unusualis. (early music from England) Glorious sound! They were quite a treat to hear.
Boy I don't get out much for adult things.
Monday, March 31, 2003 8:47 AM CST
Well, Chris and I discussed it and I attempted a night without taking the oxycontin to see how I did. I slept all right and woke in only little pain. I was very weak though. By the time I was done eating breakfast, pain was there, full force, grr. So I took an oxycontin and zofran. Pain is now gone, 2 hours later, but I am SO pukey feeling. I would rather have pain. Well, I know to keep taking the med for now. I have never endured chronic pain and it is wearying and depressing.
I sewed a poodle skirt for a friend's child this weekend. It really didn't take all that long but it spreads over an entire day between meals, kids, etc. I am finding I really enjoy creating things on the sewing machine. I just wish I had one newer than the 1940 model I have. It only goes forward and backward, no stitch length reliability and no other stitches other than straight. The sewing is satisfying a need inside me to complete projects of late. I am not a "project" kind of person but completing something makes me feel productive and purposeful.
Last night it was good to sing. It is virtually the only way I can meditate...to sing at the same time. We were doing almost all "new" stuff for me and yet I felt I could relax and think at the same time. This music is very orderly and predictable. ("early music" from the 1500-1700's).
I have to say this because I keep forgetting. Thank you to all who are praying and remembering our family. I feel like I have somehow let everyone down by not being "cured" yet, but I knew it would not be immediate even though I hoped it would be. The cancer had probably been there over 5 years prior to its removal, so a mere 6 mos of treatment was unlikely to kill it all. I feel better being on the newer drug now. I don't feel like I am dying and don't plan on doing so.
Sunday, March 30, 2003 9:37 PM CST
I guess I haven't written much lately and several of my regular readers have noticed. Sorry about that. I just didn't have anything earthshattering to say. Additionally, it's a bit hard to type when you have double vision or feel all druggy. My sister pointed out my grammar was pretty interesting also, oops.
I am ok, I suppose, a bit in wonderment about the effects of various drugs on my system. I have experienced the peculiar neurological symptoms associated with Oxaliplatin and cold now. Those could really scare you if you didn't realize what they were. It is a choking sensation. Also, for some reason the areas where my skeletal muscles attach to my bones of my trunk (esp in my back/shoulders) are very tender to touch. I notice it when I roll over in bed or when someone goes to hug me.
I sang at compline tonight. We sang an older hymn, the words set to the Finlandia tune by Sibelius:
This is my song, O God of all the nations, a song of peace for lands afar and mine.
This is my home, the country where my heart is; here are my hopes, my dreams, my holy shrine;
but other hearts in other lands are beating with hopes and dreams as true and high as mine.
My country's skies are bluer than the ocean, and sunlight beams on cloverleaf and pine;
but other lands have sunlight too, and clover, and skies are everywhere as blue as mine.
Oh hear my song, thou God of all the nations, a song of peace for their land and for mine.
This is my prayer, O Lord of all earth's kingdoms:
Thy kingdome come; on earth thy will be done.
Let Christ be lifted up till all shall serve him,
and hearts united learn to live as one.
O hear my prayer, thou God of all the nations;
myself I give thee; let thy will be done.
Wednesday, March 26, 2003 7:18 PM CST
Well, so far so good. I received my first dose of Oxaliplatin and Leucovorin about 2pm till 4pm this afternoon. No bronchospasm or tingling of the hands yet. The 5FU long infusion is in this nifty pump which contains a balloon with my med in it, a spring and which somehow relies on my body heat to make it operational. No alarms, no electrical cords. It'll be albe to sleep with it.
No marked side effects so far. My sides and legs are achy but better than with CPT-11.
I went ahead and took the full dose of oxycontin (long acting pain med) along with phenergan (antinausea med) last night. MUCH MUCH better this morning. In a pre-emptive strike, I took a dose of zofran upon rising (a very strong antinausea med). I felt nearly human. So human, I drove the kid's to story time at the library only to realize it was the wrong day! Darn that chemobrain. So, we have another venture to the lib tomorrow.
Thanks for the prayers, please keep the notes coming, I appreciate it very much. Phone calls are ok, but with the kids they can get hairy. Either way it's good to know people are there and we are in their thoughts.
Tuesday, March 25, 2003 9:16 PM CST
Well I finally survived this day. I took my first dose of oxycontin last night. I had bizarre dreams all night but the pain was GONE! I woke up today feeling exceedingly drunk and pukey, bleah. They tell me that this effect will decrease as I take the oxycontin for a while longer. Geez, why would anyone want to take this for "fun"?
Mom came over to help and to make bread. We were both out of it. I was so glad to have the help. I had no idea I would feel this bad on something designed to help me. I was beginning to wonder if having the back pain gone was worth it.
I begin my new chemotherapy regimen tomorrow. It is 3 drugs and will last 48 hours. (I go home with a minipump overnight 2 nights). Please pray I don't get the marked, severe side effects. Most of the mild side effects are projected to be better and easier than the regimen I was formerly on. I certainly hope so.
Monday, March 24, 2003 4:24 PM CST
How do I begin?
Here’s the good news. I am not dying, unless you consider we all are from the moment we take our first breath. My pukey feeling is nonexistant right now also, yay. The other good news is that I am not crazy, my back pain most likely has a very real, treatable cause. It is neither a pulled muscle or disc problem nor some posture thing. I did not think it was.
Here’s the other news.
The lymph nodes have grown quite a bit since the scans in December. Additionally, the one on the left side of the spine is actually directly between the two major blood vessels, the aorta and the vena cava, probably a BIG reason for unremitting high level constant back pain.
In the words of a former employer, “Well, this is a revolting development.” The pain first surfaced just prior to beginning cycle 4 of the Saltz regimen. At that time, it went away in a few days after beginning the chemo. I look back and think how anxious I was to get the last cycle going, I felt I was losing precious ground. I chalked it up to normal anxiety related to chemotherapy. I am beginning to think it was not just me being anxious to get on with things. I think it was because deep inside I knew something was not right. I remember telling Chris not too long ago that I had a feeling I might need more chemo.
Here’s the plan as it stands right now:
I am set to start a new and different chemotherapy regimen the day after tomorrow. It will consist of 5FU and Leucovorin (2 standard colon ca drugs) and a very new drug called Oxaliplatin. They tell me this regimen is more effective and has a better side effect profile than the Saltz regimen, but there are some very different neurological side effects. We will treat every other week for about 2 months and verify whether the affected areas are chemoreactive before proceeding further. Please pray they are.
More details later. My mind is too blurry right now.
Sunday, March 23, 2003 7:52 PM CST
What a lovely day. Even my ever encroaching sinusitis which has limited my voice and breath control can't make it too bad. I think I shall ask for antibiotics tomorrow. Tired of my deep sexy voice and a sore teeth/face.
Our neighbor came out while we were outside late this afternoon. After over an hour's conversation I have an incredible time line of her life. She was born in Germany, came here for about 12 years as a small child and then returned to Germany for a visit at nearly 20 years old, and stayed there for the next 15 years due to the war and family obligations. We were talking a bit on the war situation going on and that got her started and I was fascinated. She has an amazing story. I would love to formally interview her and get this story down. I think I finally have an idea for something interesting to write about.
I hope I have something to write about tomorrow.
Saturday, March 22, 2003 7:33 PM CST
I feel a bit like General Franks as he faced the blood thirsty reporters today. Information will be given as it is received. No, I have no information from the scans yet. I see the doctors on Monday and with any luck they will have something to tell me. Regardless of what they find, I WILL have radiation. I have no idea when that will start or how long it will last. That is decided by the radiation oncologists whom I have not seen yet. I hope I begin before April is over. It is so different that my venture into chemotherapy. They were practically shoving me in there less than one month postop.
The museum was fun. They have a special area in the basement just for children. There are all sorts of art related activities and crafts. Zoe got a bit verklempt after a bit, so we called it a day a bit earlier than we planned. She can be a very weepy little soul.
We're beginning to get the garden area ready, yay. I was never a bit fan of vegetable gardens but it has grown on me. I am excited to see so many of our perinneal plants coming up. I bought a bunch of herbs last year in memory of a tiny baby who died before birth. Most are very healthy.
Friday, March 21, 2003 8:51 PM CST
The first day in at least a week that I have not had unremitting back pain all day. It is very peculiar pain and I have begun to suspect it is related to adhesions--scar tissue formed from the surgery. I will relay the information to my oncologists and see if they think I am nuts.
The girls and I went out today. We bought enough material for at least 2 circle skirts for each girl and stuff to make a special poodle skirt for an online friend's daughter. (not bad for 20$ eh?) I hope she likes it. The girls wear theirs almost every day.
Tomorrow we're going on a fun outing with friends to the art museum. Theresa is very happy about that.
Zoe's career aspirations for the past week have included teacher, nurse, mommy and cook again. I told her that is great and she can be all those just like me.
Ingrid's vocabulary grows each day. Early early this morning, about 330 she woke up and as usual, Chris gave her some milk and put her down. She began coughing for the next 45 minutes and finally I got up to be with her. She gradually stopped with some medication and water. Then, she began to regale me with all her words in such cute baby fashion....."hellEWWWWW" (Like the woman on Keeping up Appearances), DADeeeee, DADeeeee, MoMMMMMMMeeeee, MomEEEEEE, then with the blanket as her prop, "Boo!", then NUNeeeee (bunny) and I gave up. I put her in bed, said I was going back to sleep and she should also. She was quiet right away... then as I drifted off I heard her favorite call, "OHHHHHHeeeee, OHHHHHeeeee (Zoe)" Silly baby.
Thursday, March 20, 2003 8:47 PM CST
Ok, call me selfish. I would love to get some guestbook comments or emails. It's going to be a long weekend if the oncologists don't call.
Thursday, March 20, 2003 12:15 AM CST
The PET scan was today. I brought my own music, rather than to endure the "all 80's" radio station during the lengthy test. My choice in music was apparently quite the talk in the place. It was rather loud, due to the background noise of the PET scanner. I selected a combo cd I had made with the sound tracks from "Cal", "Last of the Mohicans", "The Mission" and "The Piano". Simply beautiful. Very relaxing.
The scan moved along nicely and I was out within 2 hours, which is very good considering there is a required minimum of 1 hour 45 minutes for the procedure. The tech read me Dr K's CT report. I shall wait until Monday to share the interpretation since part of it is relying on the PET information.
The war has begun. Much tv coverage of speculations. I tire easily of continuous, blanket coverage of anything but especially war since so much needs to be secret. It is a very strange experience to watch live coverage of the middle east on our tv. I pray for all involved.
Tuesday, March 18, 2003 8:31 PM CST
I can't decide if it is the sinus infection returning or what. I think I am in denial... my teeth hurt, my throat hurts, I wake up gagging. Ew. I am not looking forward to more antibiotics. My tongue was white yesterday (a sign of yeast in the mouth, bleah). Now that I am nearly 3 weeks out of chemotherapy I am experiencing my first full blown mouth sore episode, wierd. Although with an ANC of less than 1000 I guess I am not surprised.
I had my CT and Chest xray today and requested the same radiologist read it. That went well, however my tongue got numb after the dye injection...that was disconcerting. PET scan on Thursday.
I hope Dr.G calls me before Monday like he did last time.
Saturday, March 15, 2003 8:50 PM CST
The poodle skirts are on the photo page!
Today we went out of town for the first time since November. It was a great day for a trip to see some family, Thom, Patsy, Amy and Alex. Amy is the big girls' FAVORITE cousin. A great big Barbiethon was had in the basement. Ingrid steadily and systematically tried to get into all of Aunt Patsy's pretty things... big sigh. She is persistent with a capital P! It was a nice time and a good visit. So nice to get out. Now the girls are so excited to come back one day and have their slumber party with them.
Theresa did well with her second ever sleepover and her buddy Paige's home last night. She was dragging as we got in the car. She quickly fell asleep, as did Ingie on the drive to Thom and Pat's. Zoe was wide awake. However on the way home we eventually convinced Theresa she didn't have to recap ALL the events of the party and we had three sleeping soldiers in the back seat, yay, a rare event.
Friday, March 14, 2003 12:11 AM CST
First of all, when are my end of therapy scans? Early March 18, Tuesday at Baptist East (anyone want to baby sit?). That day I do my CAT scan and chest xray. This goes relatively quickly. I have an appointment the day before at the oncologists to get my blood count, probable Procrit shot and have them put in a peripheral IV (the radiology staff prefer it to my lovely central line). Then Thursday, the 20th, I have my PET scan at Lifescan. This one takes a few hours (anyone want to baby sit?). The procedure has you get an injection of the radioactive glucose solution, then you wait for 1 hour, then you get in the scanner which does 6 inches every 8 minutes... or is it 8 inches every 6 minutes? Anyway,it takes about an hour to do the scan and they let me get out and go to the bathroom midway through. If you recall, it is this very recent technology which identified the remaining positive lymph nodes that were responsible for me being treated far more aggressively than previously expected. (that is a good thing). I am very anxious to see the second PET scan. It's neat--they make a CD with a 3 dimensional "movie" of your body and positive cancerous areas show up black.
I have been musing a lot lately about life, career, cancer, children, marriage and all that stuff. I'm not sure where to start writing it down. I think I will begin with copying something that was sent to me by another Sarah, on the other side of the country who has also been going through chemotherapy and radiation this year. She sent me a book filled with personally copied and compiled meditations for use while in chemotherapy. I have appreciated the things in it. It is very specific to her journey but it much parallels mine. It is not some published thing, but a labor of love.
Recovery
The sky is soft as a grandmother's quilt,
fleecy as a sheep --
sheep as you imagine them to be,
not as they are.
The leaves and grass are soft too.
They seem to heal you
with their green fingers,
their heady perfumes rising.
The wind will open its arms,
the field will catch you in its lap,
they will rock you, rock you like a baby
as you dreamed in your deepest longing,
not as it happens when you wish for it
but as it's told in an old story,
a story you were born knowing
and later forgot.
-from The Book of Blessings: New Jewish Prayers for Daily Life, the Sabbath, and the New Moon Festival by Marcia Falk
Wednesday, March 12, 2003 9:48 PM CST
I am gradually coming out of the continual pukey phase (how's that Tom?). Wow a whole day without phenergan! However I am so easily fatigued. I am told often to give myself a break but mostly I feel like an extremely out of shape slug. Yesterday Chris decided to rototill up our entire front yard (something we have planned on doing for oh, about 5 years) so I went out to help. It was so pretty outside and in the mid 50's. I think I raked dirt/grass clods for about 30 minutes when I just rapidly ran out of steam. My arms were trembling and my vision was all wiggly. I sat down. I drank water. I got back up and tried again. I succeeded in pushing myself to completely fill our big trash container with grass clumps... Chris said it was about 2/3's too full to drag to the back, but finally got it in the back yard for me to dump. I managed to drag my body back to the front. At that point I sat down, then laid down on my back directly on the driveway. My neighbor said she didn't know if she should call 911. Ha ha. I was just worn OUT. I gave up at that point. I sat for the rest of the afternoon and felt like a slug. A worn out slug.
New developments on the kid scene:
Zoe is out of the abstract art phase and now draws people. They are the stereotypical thalidomide-esque looking people a normal 4yo draws. Theresa has always drawn pretty detailed pictures but this is a new and exciting event for Miss Zoetta Margaretta. (her current popular nickname). Today she announced she wanted to be a nurse when she grew up. She and Chris were playing store and he offered whether she wanted to be the consumer, the baker or the accountant (she is usually the accountant) she replied, "I want to be the exhumer!" hee hee, love it.
Ingrid now communicates more and more. I just love to observe childrens' development. I asked her if she wanted some "mum" (a bottle of milk) today as she got in my lap with her favorite crocheted blankie and sucked her thumb. She said, "YAY YAY YAY!!" So I told her to go to her room and I would be in with the mum. She went to her room, tried to turn on her tape player, and got in the rocker. Nap followed...cool. At Meijer, her response to the offer of a cookie was also a big "YAY YAY YAY" and "cooookkkkkk" The daily references to "Ohey" her sister, and animal sounds continue.
Theresa is Zoe's favorite person to put her to bed. T does the story, prayer and a song for her. I like to evesdrop outside the door and hear her doing this. I am so happy they are good friends.
Monday, March 10, 2003 9:08 PM CST
9:30 am lab appointment today. I figured I was going to probably need a Procrit shot today since I was low last week before chemo. Unfortunately, the office was uncharacteristically VERY slow this week. I didn't get my finger stick done until 1015, and results which have to be manually counted if you fall below a certain level, didn't get reported to me until nearly 11am. The lab person was going to send me on my merry way when I pointed out my hematocrit was 37 last week and now it was 34.9 and my ANC was 1100 last week and now was about 500. I asked if she would run it by the doctors before I left. So, I had to go to the second "chemo" area waiting room.....and wait.....Finally seen and, yes, they agreed I needed a Procrit shot and I needed my tumor markers and chemistry tests drawn from my port. That takes a whole hairy procedure. I finally left the office at 1215.
This was not fun but most of all I had brought Theresa and Zoe with me because I figured it would be a quickie visit. Not. They were VERY good. It was such a long time for them. We had some of the snacks, juice, and made the rounds to all the nurses and doctors. They were in rare form as they showed off their circle skirts I made this weekend. They are so cute. I'll post a picture soon. The skirts are complete with rick rack and poodles on leashes.
Each day's icky feeling is a slight bit better. My tongue still feels burnt and my tastes are still off. My hands are sore as are my foot soles but I know they can heal now, with no more killing from the inside out.
Sunday, March 9, 2003 1:30 PM CST
I stayed home from church today, not so much because I felt bad but because I did not want to be in close contact with that many people. I am assuming my ANC is very low since I received chemotherapy 6 days ago with an ANC of 1100 or so. The last time I did that, my ANC was 400ish the following Monday. Aside from infection control, I weary of going out in public and being told, "You look good!" when I know I don't look great and being told I look good makes me feel a bit like I am laid out parlor style at the funeral home. Additionally my hair is very very thin and if I hear one more person tell me it "really doesn't look that bad..." I'm gonna SCREAM! What it really doesn't look is that good. I have maybe one third the amount I had when it started, so I have less than whispy haired Ingrid has. I look a bit like a teddy bear who has been rubbed a few times too many. My pillow is covered with it and our sink drains bear witness to the continual loss. I honestly don't care whether it all falls out as long as some of it grows back. Loss of hair is no measure of the severity of chemotherapy, it is just a thing that can happen.
One more thing... If I say I am feeling Ok, I am feeling OK. That is what I said and what I meant. My mother, husband or anyone else will tell you the same. If I feel barfy, I'll let you know. What I probably won't say is if the continual public assessment of my well being and hair is driving me crazy.
What I wonder is how long it will be before my skin returns to normal, my tongue doesn't feel burnt or I won't get short of breath climbing up from the basement or making my bed. I wonder how much longer I will feel like taking phenergan and if I can get some long term wierd side effect from taking it so often for so long. I ponder if my current bad tastes, feeling of BLEAH and all that is somehow unrelated to cancer and related to my family's tendency toward diabetes. Wouldn't that be lovely to be cured from cancer only to become diabetic?
I am suppposed to start an aerobics class in late March, perhaps at least I will lose some weight.
Friday, March 7, 2003 8:29 PM CST
What a beautiful day it turned out to be today and I hear it is going to be even warmer tomorrow. Oh yay. The girls were out most of the afternoon. "OHee" and "Too" (Ing's names for Z and T) played with and watched over Ingie. It allowed me to watch them from the back window while sewing Theresa and Zoe each a circle skirt.
Tonight I went in to say good night to Zoe and she said, with a very serious look on my face as she held my hand, "Mommy, never forget, as I once told you outside.... I’m going to be a sew-er when I grow up and if Theresa ever wants any of my pants she can have them, Oh, and Mommy, you know why I am crying is because I am so tired." Funny girl.
Ingrid and I went to Meijer for our weekly shopping and she battered me with a near constant chant of "Pleeee....Pleeee" which is her word for "please" and "cheese". It's so cute to see and hear. She was very persistent about getting all of the Kix I had in my pocket for her. It probably wasn't the world's best idea to be out in a crowd like that with what is probably a rapidly dropping ANC (infection fighting portion of the blood) but it needed to be done, so I just washed my hands alot and hoped for the best.
Each day this week is a little bit less on the nausea front. I have discovered, however, a very distressing thing. Chocolate, in virtually ANY form really makes me more nauseated and leaves a terrible aftertaste. Oh dear, this is NOT a pleasant development. I do hope this reverses.
Wednesday, March 5, 2003 11:41 AM CST
The curtain is lifting. I feel every so slightly less BLEAH. Wish I had a better name for it. Oh well, I think most people can gather what I mean by bleah.
Zoe tried to play a computer game today. She is just still a bit too young. She doesn't "get" how to move about the screen. I am so pleased. I have no desire for my girls to learn the computer early. Theresa was about 4ish when she began and picked it up quickly but for the most part she is disinterested.
Daddy Chris and Miss T went to Sam's store to get the tire fixed this morning. BIG EVENT!!!! Theresa had to go potty while they were in the checkout line. Chris could see the bathroom from his place in the very long line so he encouraged her to go alone and he'd be right there waiting. She did and I guess she was very proud of her independence. Each day a new thing. She also arrived back home from their adventure with 3 new books from the library. She is going through books rapid fire these days. Many times now I have found her quietly in her top bunk reading Captain Underpants or Junie B Jones. Amazing. I love it.
Ingie is all OVER the computer and piano punching buttons and keys. We can hardly keep her from either one. Hopefully she won't reprogram the computer.
Zoe is our little cook. She loves to hop up beside the counter on her stool and help out with anything either here or at Grandma's. Today as she and I ate lunch she announced "When I grow up I am going to become a cook!" (this career choice changes daily from cook to queen to ballet dancer,etc).
Today is Ash Wednesday, the beginning of the liturgical season known as Lent. Pretty good timing. I think I'll give up cancer for lent. :)
Tuesday, March 4, 2003 12:52 AM CST
Another bleah day. I am tired, nauseated and low on patience. Luckily it's warm outside. The big girls are thrilled.
New photos on the photo page!
Monday, March 3, 2003 9:03 PM CST
Last chemotherapy treatment for now. I finished 93.75% of the recommended Saltz regimen. Darn it all if the perfectionist in me wishes it had been 100%. I'd like to say it was quite celebratory but mostly I felt so barfy and tired I just wanted to go home. I'll feel better next week when I go in for a recount. My ANC was nearly 1200 today, too low for chemo normally but Dr. Grimaldi had me do it anyway since it's my last. Thank you Dr G, even though next week it'll probably be about 500 and I'll be home bound for a bit. I missed getting another 1000$ Procrit shot by .10. My hematocrit was 37, the breakpoint for getting it.
On my way out, one of the nurses had me show a youngish (maybe 50 yo) woman my port. I, of course, extolled its virtues highly. She was still in the shell shocked stage. She has lung cancer metastatic to the brain. Sigh, there is always someone worse off than you.
I mostly feel very very weak, tired and nauseated with a big 'ole capital N.
Now comes the waiting.
Sunday, March 2, 2003 1:36 PM CST
A few people have asked for the recipe for the bird cakes we made. They're really easy. I got the idea from "Family Fun" magazine that I looked at while waiting at a doctor's office.
I put about 6 envelopes of knox unflavored gelatin in a bowl and melted it with about 1 cup of boiling water. It will be very thick. Then mix in about 2-3 cups of the bird food mix. (any mix you want-I used a general purpose one from Meijer called Birder's Blend...it has a lot of millet in it so it packs down well) Mix it well, let sit for 5 min or so and mix again. Then we packed ours down into cupcake tins. The recipe I had suggested mini bundt pans. After packing them in, put your finger down the center of each to make a hole for hanging. Let them dry several hours then gently pop out onto a place for them to completely and harden overnight. Then if you want to hang them, thread some ribbon through the hole. Our best luck has been sitting them on the back stoop directly on the ground. You could also make a squirrel type platform to put them on.
We spent an hour or so at the Kentucky Crafted Market today after church. I would have loved to have spent a little more time looking at the booths but kids the age of ours tend to make you streamline things. They finally have an area for people who do stuff more like Chris--one of a kind, unique stuff. Since his furniture is all custom made/commissioned it doesn't lend itself well to shows. Now that they have this "gallery" type area, maybe he'll do that show sometime. He'd love more exposure. The girls loved the kid's section. I should have just gone there with them from the beginning.
Oh, the dresser cabinet is all done, now Chris is working in his "spare" time to do the 9 drawers. Oh joy, one of these days we'll have a dresser big enough for the two of us!
Yay, tomorrow is the last chemotherapy visit. It can't be soon enough. This cycle has been hard and wierd things have happened. My mouth feels very odd. Sort of like burnt tongue feeling with this all over "rough" sensation. Probably means it's shedding skin quicker than normal. After tomorrow, I will be on treatment "holiday" for maybe as long as a month until the radiation schedule is made.
I'm off to sing Compline with evenSong shortly. We'll have two concerts coming up, one at Nazareth Motherhouse(modern music on the theme of Trees) and one in an unannounced location. I'm hoping it will fall in the Lenten season. I like the music for Lent.
Saturday, March 1, 2003 12:40 AM CST
It's a sad winter day when 40 degrees qualifies as "warm". Yesterday made it to 40ish so we got on our double layers and mittens and hats and went to the zoo. Ingrid rode on Chris' back and the girls walked. We had the zoo virtually to ourselves. I think we saw 2 other families. We spent nearly 15 minutes in the gorilla house. In the regular season the gorilla exhibit is so crowded you rarely get to see them well. They fascinate me. All of them were around, including Jojo, the enormous silverback. I think Helen and Frank (the senior female and patriarch)are rather depressed or bored. One of the other adult females was very interested in the girls. She kept coming to the window, knocking, etc. We were at the zoo about an hour, just enough time to make a full curcuit, see most of the animals have afternoon meals and get the girls good and tired.
Today I put out the bird cakes we made the other day. Theresa is fascinated with the male and female cardinals who have come to "feast" at our back window. She keeps sitting very still at the sliding glass door asking them to come back. Watching birds is a favorite of mine also. Hopefully we'll get some regulars. Of course the squirrels are also quite interested in the seed/gelatin cakes. It's only a matter of time until they decide to grab it, I bet.
My hands are back to their "molting" state. It's taken all week but I am finally taking a little less phenergan and not feeling so icky. Wow, just in time for another hit of chemo.
Wednesday, February 26, 2003 6:47 PM CST
New photos on the photo page. Ingrid is fascinated with the small vaccuum. She even tries to plug it in. The other is just another of Zoe's daily fashions.
I got out some today. Pediatrician appointment for Theresa and Zoe. They are normal, Zoe got all her booster shots and screamed bloody murder. They have hematocrits higher than their mother.
My bleah feeling the past few days is probably a combination of chemotherapy, augmentin (for the sinus infection) and life in general. I am taking alot of phenergan. It doesn't help my patience at all.
Tuesday, February 25, 2003 12:59 AM CST
Well I still feel bleah. I made myself eat but I sure don't feel like it. My legs and back ache a lot today which is unusual. But, I'm not blowing my nose as much. The phenergan makes me drowsy but I just know if I lay down, Ingrid is gonna wake up.
Yesterday Zoe came out with a funny. We have several Playmobil sets. They love to play with these. Recently I added a small set with a park ranger in it. On numerous occasions, Theresa has corrected Zoe telling her it is Arranger...Park Arranger. Then yesterday after breakfast as they played with the park arranger and his animals, and Zoe mixed up all the nativity peoples' heads and capes, she told me about how Joseph was watching over the oxygen in the barn (hee hee, you know, those cow like animals that pull carts and the like....)
Monday, February 24, 2003 3:49 PM CST
Bleah, I feel Bleah.
Sunday, February 23, 2003 8:44 PM CST
A little more snow is forecase before tomorrow so I guess it'll be a quiet day at the CBC office once again. Apparently they have quite a few patients who drive from way out in the state to their office.
Week 3, often the time when the most side effects happen with me. We shall see if that holds true this time.
I have decided that my cold of last week has most likely now progressed to a sinus infection. My face hurts and I still have that sinus-y feeling. Why not add yet another pill to may daily regimen? I am such a poor pill rememberer. It will be nice to be finished and not have to remember as much. I'll still have coumadin as long as I have a port in place but otherwise most will hopefully stop.
I wish there was a way to have the scans already done so I would plan my life a little more. Daily radiation for an indeterminate period of time sounds so up in the air. I guess you really don't get your ticket to the next stop until you are ready. We really only have each day, but yet I keep getting requests for my time in the future and I don't know if I can do it or if I even want to do it. This whole experience has greatly lowered my tolerance for tedium and pointless expenditures of time.
Hopefully the VW will be done at the shop tomorrow. I don't enjoy the thought of squishing up in the Integra with the 3 girlies. I think I shall ask the patron saint of minivans to intercede for us...
Saturday, February 22, 2003 1:57 PM CST
Rain Rain Rain. My but it sure is wet here. The girls want to go out so badly and it's such a mess.
In order to intensify the house craziness, the bigger of our two small cars is in the shop...been there since Thursday. We tried to take her home today but she still would not start. Apparently the fuel pump, cha--ching. I will be happy to see a minivan some day. The girls were not thrilled to be squished into the back seat of the Integra. At least we have a second car to fall back on even if it is tiny.
When life gives you bad weather, bake bread. I have done about 4 batches in the past 2 days. Luckily I have lots of friends who like bread.
I finally changed the photo albumn. Now there are a couple of blurry photos of the two older girls. Kathy brought her parrot over last Monday night and Theresa was fascinated with her. Last weekend when it was so icky outside we decided to paint two of our living room walls dark red. It took 4 coats of paint but it really looks nice now. I spirited away the ancient heavy old drapes and hopefully they will get "lost" in the basement.
My fingers and hands are beginning to "molt" so my recent restart into crocheting will probably be cut short very soon. Luckily in a month or so they will heal and I can get back to it.
I'm itching to go "somewhere" and do "something".
Thursday, February 20, 2003 11:04 PM CST
We ran out in the sunshine today. Even with the puddles and slush, it was good to take the girls on a walk, drag, push down the street. It was too short but I have no energy the past few days. I know my blood count can't be that low so it just must be a chemotherapy thing. I have grown so accustomed to breathing heavily with any activity it doesn't even seem all that abnormal anymore. I was saying to the nurse the other day that feeling bad is reassuring and feeling "good" is not. She said she hears that alot. I also told her I wanted my money back guarantee.... I think I should have at the very least been able to lose weight...grr.
I keep thinking about what will come next. The schedule for radiation is so up in the air until I have my repeat CAT scan and PET scan. I am very curious to see what it shows. Everyone keeps telling me how they'll be so thrilled to see it come back with nothing. No evidence of disease would be fine with me but having something left would not devastate me either. I feel like a traitor even saying that but it is my body and my experience and I know it could take more to get rid of it. However, if it wants to be gone, that is ok with me also.
Tuesday, February 18, 2003 12:22 AM CST
I did end up getting chemo since I had no fever and my blood counts are ok for it. The atropine seemed to really help with the cold. I feel much better with regard to the cold today.
I still get achy and tired, more so than in previous months. It was very quiet at the office yesterday as many of their patients called in due to the weather. The main roads were not bad, just the side roads for us.
I am getting anxious to see the next scan results.
Zoe has decided that she never wants to leave our home "not even when I am old and married..." hmmm perhaps her husband will think otherwise. Theresa tried to help her out by saying perhaps she could buy our neighbor's home and let Zoe move in with her.
Bruce and Kathy came last night with dinner and their pet parrot, Coco. The girls were fascinated. After the smaller two went to bed, we got Coco out of the cage and she said a few words for Kathy. Funny thing, when Kathy and Bruce went to see the dresser Chris is making for me, I stayed upstairs with Theresa and free Coco. Within a few minutes, Coco got off the perch and waddled toward the basement. She was looking for Kathy I presume. She eventually pleased herself climing on top of my computer chair and squawking at the computer screen.
Sunday, February 16, 2003 9:31 PM CST
Well everyone but Chris has a cold in some stage or another. Ingrid started it late last week, then Zoe and I got the snots on Friday night and tonight Theresa said she felt bad. Lovely. My head and face hurt and I am tired of sniffing and blowing. I am currently waiting on my Nyquil to take effect.
I do hope they let me get chemotherapy tomorrow. Gee, am I a glutton for punishment or what? I suppose they may have me take antibiotics in case this becomes secondarily infected but I really don't know. I plan on calling the office before going in tomorrow to see what I should do. With all the ice I am sure there will be some no shows in the office so it probably won't delay me much. Additionally I don't want to share the cold with my chemo buddies.
Friday, February 14, 2003 8:23 PM CST
This morning I was awakened by my 3 girlies bringing in the obligatory candy gift for Valentine's day......Necco brand conversation hearts (my favorite). Of course, Zoe smiled her dimply grin and batted her eyelashes and asked for "Just one, please?" She and Theresa got a few, but Ingie who was just as interested didn't.... oh my, quite upset.
I remember an episode of "Prairie Home Companion" where Garrison Keillor went on and on about February and how long it is. Until this year February never really bothered me, but it is this year. Maybe because I know in March I will finished getting chemotherapy, or maybe I will begin to be warm when I sit around at night, instead of cold. Or maybe it's because Theresa and I just finished reading the dreariest Laura Ingalls Wilder book yet, "The Long Winter".
Today I just HAD to get out. I took Miss Theresa of the very loud voice with me. It did help to go out and hear her cheery conversation with every person who paused more than 5 seconds. She has been very literary lately. There are love notes all over the house....."from your loving sister/daughter Theresa" Tonight she was "reporting" all the news of our family and recording it in her new notebook.
Whenever I feel blue, I start breathing again....
Tueday, February 11, 2003 7:34 PM CST
Today was much better even with chemotherapy fog and phenergan daze. It took supreme effort to concentrate enough to get the homemade valentines made out. I hope no one gets the wrong one. I kept having to take them back out of envelopes to check which went to whom.
Ingrid is now calling her sisters by "name". Theresa is "Tue" and Zoe is "Doh". I love watching her develop.
It's encouraging to see the evenings coming ever so slightly later each night. I keep looking for signs that spring will come. Yesterday we had hundreds of robins in our trees and yard.
Tueday, February 11, 2003 8:40 AM CST
Last night was my worst post-chemo night. I was ok until after dinner. Of course I had the usual aching back and legs but the nausea overtook me. I took phenergan and had very little response (it is what usually works for me). I got to the point where keeping my eyes open nauseated me so I laid down on the couch and had Chris get me a Zofran pill. I felt so icky. It gradually over 2 hours gave me relief enough to be able to get up and go to bed without barfing. I think if I was an easy barfer I would have done so but I just avoid it so vehemently. I also had a fever so I called Dr. Grimaldi. He wondered if I just had a GI virus. Hard to say since the symptoms are the same as chemo night flu.
Today I feel a little better and was hungry. I have uploaded some pictures (terrible ones) of me on the night of chemo and the morning after so you can see what my face looks like. My "night of" one really doesn't do my wallpaper paste colored skin justice. It really is a greygreen pale on that night. Yes, today my cheeks really ARE that color. They say it's from the decadron in my premeds.
Dr. Scullin and I had a good conversation about plans for what comes next. I will receive the rest of this cycle, counts depending. Then re-scan (CT and PET) and proceed to radiation. The time in radiation depends upon the presence or absense of tumor/lymph nodes. It will be 5 days in a row for a specified number of weeks. He said more of this particular regimen of chemo would not be of any advantage. After radiation, we will wait and see. If I ever have a recurrence I would probably go on Oxaliplatin, a very very new drug that is not approved to be given until you complete a course of CPT-11, 5FU and Leukovorin.
There is really not anything published about younger colon cancer patients with metastatic disease. I keep hearing of younger people with it. I would love to do an anecdotal collection and reporting of the data so that young people with this "disease of older persons" would have some answers. I really think although it's not something anyone wants at age 39, it is more prevalent that reported and we do have much better chances for remission (complete) rather than just an extended "time to progression". However, the younger people most of the time tend to get their disease caught earlier than mine was. If anyone knows a way I could get people who are younger surviving with cancer I would love to know.
Sunday, February 9, 2003 7:33 PM CST
The evenSong concert at Christ Church Cathedral was very nice. It is such a pleasant place to sing. The accoustics are very good for our group. As we sang I was reflecting to myself how much I appreciate being able to sing this music. It is soothing and therapeutic to hear and to sing. I am finally getting to the point where it is not such hard work to sing it and I can let my mind wander a bit. I am not very good at the spoken mantra type of meditational prayer but when the meditation is sung I can usually get in the mode of being able to think of other things and sing at the same time. Anyone wanting more information on evenSong please email me and I'll put you on our mailing list.
Tomorrow begins cycle 4. In theory it is my last cycle, which will end the first week of March. I say in theory because I want to clarify some questions that have arisen in my head. As I find out the details I will post. Essentially I said in a letter to my doctors that I am not planning on dying from colon cancer and am willing to do whatever we need to do to get rid of it. I have read essentially all the scientific published studies and the data from several nonpublished studies but it is hard to extract answers for my situation in light of them. Of primary importance is that the vast majority of the populations studied that were treated as aggressively as I have been were stage 4 (metastasis to other organs) and age average was over 65. There are age inherent health problems with an older group and an essentially terminal population. All the data was expressed in "time to progression" terms. I really really don't want to progress.... I want it gone.
I am not looking forward to "chemo flu" tomorrow night but in a strange way, feeling poor has become of a comfort to me because I know something is working. Ok I am wierd.
This evening after returning, I watched a bit of "The Victory Garden" and began to get inspired about planting this spring. For the first time in years I don't feel sick or in pain and I am not either in early pregnant blahs or recently post partum business of baby-dom. Ingie will be able to walk around and play in the sand and the big girls are of help with planting, prep, etc. I look forward to warmer days and dirt.
Tueday, February 4, 2003 9:31 PM CST
Several people have inquired lately about my singing. The group I sing compline with each week (evenSong) is having a concert THIS Sunday, Feb 9 at 4pm. It will be at Christ Church Cathedral (can't remember the exact address but on the east side of 2nd street between Muhammad Ali and Liberty. It was a very successful concert in January and this time we are able to add back in the songs we could not do in January. It will be a good and pleasing concert. I hope to see some familiar faces. If you can not make the concert but want on our mailing list for future events please let me know and I'll add you to the list.
Theresa and Zoe had a fun day with our dear friend "Miss Donna who Paints" She took them to her workplace, Louisville Stoneware. They each painted a bowl (to go with their mugs they did this fall) and then did a tour. Theresa was fascinated with the kiln that said something like, "Snuggle me" on it.
Ingrid stayed at Grandma and Grampa's while Chris and I went and refinanced the house. We have been waiting and watching interest rates for quite some time. They finally got to a point where it would be advantageous for us to refinance. Just in time to apply the gained savings to our lovely health insurance monthly bill (which is going up)! sigh.
The family car is in the shop getting it's uncloseable window fixed so we drove the sardine can, oh I mean the ancient Acura, home. The girls were so squished up in there. Nothing like a little family unity, ha ha.
I sat down and wrote out all my various medical questions and mailed them off to my oncologists today. I hope they meet and discuss me before my visit on Monday. There are just a bunch of miscellaneous questions milling in my head. They are a great group and I will eventually miss seeing them, ok not THAT much.
Monday, February 3, 2003 7:51 PM CST
Well, for the first time in nearly 2 years my blood count is normal, low normal, but normal. No wonder I feel well.
PUBLIC SERVICE ANNOUNCEMENT
I FEEEEEEL fine...occasionally worn out or exasperated by 3 girls 6 and under (one was 4 today).......periodically dealing with side effects from chemo, but other than hand peeling none this week (I've been off chemo for 3 wks). In case anyone is wondering and not wanting to ask. I'm not real eager to restart chemo from the aspect of feeling ick for a day or two but I am eager to get rid of cancer. I am happy to talk about it if people ask and it's honestly not that awful most of the time. We are very open with our girls so they know what is going on, it's not a secret.
If I could figure out a way to do so, I'd go on Oprah and point out just how common this cancer is and how preventable, but I doubt you'll see me do any "A-thons" because I think they are so inane at times. Why not just donate to a cause? I don't see how my walking some distance or whatever makes it more worthy to give to a cause.
Many people also want to know, "But how is she REALLY feeling?" REALLY I am most of the time feeling better than I have in a long time. Now that my count is normal and the surgery eradicated the majority of the cancer I can realize that I was not feeling well for a long long time prior to this but I had adapted to it. Yes, I would rather have just gotten to feel great without a big old incision and an implanted IV on my body but hey, it sure beats the alternative. :::stepping down from the podium now::::
We had a birthday celebration for Miss Zobo tonight. She loved the hoopla. Theresa treated her "like a queen" today. I have updated the photos, go check out the photo page!
Saturday, February 1, 2003 8:46 PM CST
Well, I have now learned I am not crazy. After months of trying to remember to look this up, I have confirmed that "chemo brain" is a recognized phenomenon. Most of the research is in women with breast cancer undergoing chemo but the same applies all around. It's a low level cognitive dysfunction. In many ways it's rather humorous...I go to Meijer and just wander about aimlessly trying to find things because I can't find the list I made. Then I get home, find it in my purse and discover I have to go back tomorrow for all the things I forgot. I don't forget important things, but rather, very commonplace things or names of things. At one humorous site I read where a woman asked her doctor how long this would last. He said, "oh about a year, but by then you won't remember you asked me." ha ha.
Theresa had a friend over today. Much squealing and high pitched voices. Zoe spent the day with Uncle Kent and Aunt Linda. She was so cute. Apparently again she worried that Theresa would have a good day without her. So sweet.
Friday, January 31, 2003 at 07:20 PM (CST)
I know it's wierd but feeling normal doesn't feel "right". I get used to feeling a low grade ick while on chemo that when I am on a 3 week washout, I feel funny. I would really prefer to restart on Monday but it's probably the best insurance to wait and get a whole cycle in.
Zoe is doing her first shopping trip with Uncle Kent and Aunt Linda. She is a pretty low key kid so while she is glad to go and will have fun, she is not bouncing off the ceiling as Theresa would be. Theresa, on the other hand, is having her good friend Cassandra over. She is SO excited. She even wrote a list of things she wanted to do while she is here. Cute. I'll be glad to have someone here to give Theresa things to do.
I am in such a quandry lately about what to do with myself when this is all over. Although I have enjoyed birth assisting, I am not at all eager to go back to on call work. I never slept well when I had a woman due. For quite some time I always had someone due. (I used to take 3-4/month). Besides that, I have really come to enjoy being at home without being beholden to some woman's hormones and doctor visits. I have a couple of births lined up that I would not miss for anything, but I am just not sure I want to do a bunch anymore. Something about serious illness that makes you decide to re-evaluate your life.
On a much less deep side, I FINALLY found a waffle maker! Our old one died recently and I was wanting to find a large iron that was not a belgian type. Hooray... anyone searching, it's a Toastmaster, sold at Sears--and cheap! Amazing, all this time it was right across the road from us. Ok, I have no excitement lately.
Wednesday, January 29, 2003 at 09:35 PM (CST)
Today my friend, Jane, came by. I asked her to bring her violin so the girls could see her play it. Music is such a universal thing. Within minutes of her beginning to play, the girls were dancing around the living room and Ingrid woke up to see what was up. They were fascinated. Ingrid just stood and stared. Then Jane offered to "help" them play. How cute. Theresa was much more gung ho about it. Zoe was much more gentle. I would love for either of them to learn to play. Theresa is wanting to get back to piano lessons. Spring will bring more than an end to chemotherapy.
Check out the photo page. I put on a couple of the girls playing!
Monday, January 27, 2003 at 09:18 PM (CST)
Yesterday on our way home from church, I mused to Chris that my ANC would be about 1100 today. It was 1155. Much more comfortable range. Zoe went with me. She is very serious about her role in keeping me from crying. She gets very serious and holds onto me when they do my finger stick. So sweet. Curee and Shawna, the lab techs, get such a kick out of her. It's nice to have a kid with you at the oncology office, brightens everyone's day.
Zoe and I had a morning together doing errands. She is so funny when she is alone. Of course we had many reflections in the car about how sad she was that Theresa wasn't with us. The two of them are very close. Zoe even mentioned how she missed Theresa because of their bunk beds.
Sunday, January 26, 2003 at 09:44 PM (CST)
Well we shall see if I am over 1000 on my count tomorrrow. Chris says he is staying home ALL this week to work on the dresser for me. Be still my beating heart. I pray no one calls with some urgent handyman job that he feels compelled to do.
I sang compline tonight with my friends in evenSong. I just love doing that. That form of music (renaissance/chant acapella genre) is so therapeutic for listening and singing. One big change I have noticed in recent months is that I am willing to try anything on short notice. That used to strike terror in my heart. Now it's like, so what if I make a few mistakes......it's not the end of the world. We have another concert Feb 9 at Christ Church Cathedral at 4pm if anyone is interested. It's an encore performance of our very successful Epiphany program. Since it's the day before I restart chemo I plan on singing it.
My hair keeps getting thinner and I sure hope some regrows. I thank God everyday that I live in an era of great hair products, especially spray! It's an engineering feat and I am pretty sure I may be using some mirrors to make it look normal. It feels about as thick as Ingrid's hair. I remember prior to all this I was wishing there was a way to thin a bit of my hair....be careful what you wish for.
Saturday, January 25, 2003 at 01:49 PM (CST)
Chris is painting the big girlies' room yellow. Oh it's so lovely. I am so glad to be rid of the awful pickish grey I painted there when I was pregnant. Pinks are hard to visualize. Theresa and Zoe have both had their turn helping Chris.
Ingrid has decided she really likes my old bear from my babyhood. When she awakens from naps or night time, she points to the closet and says, "ooo ooo ooo" until we get Honey Golden Bear down for her. He's pretty fragile since he's nearly 40 years old. He is about 12 inches tall, black and white (white tummy and ends of limbs, inside ears and nose area. Anyone who sees a reasonable facsimile, please let me know. I'd like her to have one who is not so elderly and hopefully washable.
My fingers are slowly healing.
Friday, January 24, 2003 at 07:37 PM (CST)
Just changed the Ingrid photo!
Friday, January 24, 2003 at 01:26 PM (CST)
Darn I hate it when I do that...
I mean acronym. Typing with a one year old beside me.
Friday, January 24, 2003 at 12:34 PM (CST)
I went yesterday for a repeat blood count (it's a CBC-complete blood count, but that is also the name of the oncology office, cute anacronym, eh?) My ANC was up to a whopping 630, oh ah. Dr Kommor says that over 500 puts me at much less risk. The nurses are mystified at why I did not receive any more neupogen and so am I but the doctors say I am rising on my own, and I suppose this is preferrable. However, they don't have to be captive in their home with little ones fearing that one will get sick and give it to me.
At this time I am set to restart chemotherapy 2/10. I kind of hoped they would let me restart 2/3 but they all think I am nuts. (It's Zoe's birthday so it's not my dream day to receive it) The concern I have is that the last 3 week break resulted in a much exaggerated range of symptoms after receiving chemo. Perhaps that would have happened anyway but it was like my first dose.
My fingers are very very sore, cracked and painful. Imagine sore hangnails on all your dominant hand's fingertips. Then imagine that with minimal provocation, your nails separate from the beds every few hours....ow. It's hard to do really commonplace things like turn on a lamp, open a bottle, etc. I use prodigious quantities of various lotions and potions but part of my care is to observe good handwashing, so there goes the lotion. sigh. My friend, RuthAnn gave me these nifty gloves with some sort of gel in them that I wear when I can and they make my hands soft for a few minutes :)
I am praying and gambling that my ANC will be acceptable for me to cantor on Sunday. Cross your fingers, say a few prayers.
Monday, January 20, 2003 at 07:58 PM (CST)
Today I was supposed to get my last treatment for this cycle. However, my ANC (infection fighting part of blood) was only 432 and I need to be 1500 ideally, but at least over 1000. So I did not get any chemo. The doctor says my counts will most likely rise on their own on my 2 weeks off. In the mean time I am to get weekly blood counts and stay healthy. I am a little worried that if I don't get all my chemo, I might have some recurrence but I also know right now is NOT the time to kill off all my neutrophils.
COMMUNITY HEALTH PROMO:
If you have a cold, flu or symptoms thereof... PLEASE do everyone a favor.....DON'T go out in public spreading the wealth. Stay home, chug nyquil and get well. No one else wants your germs. Ok, I am done now. Seriously though, I heard an actual commercial where they were saying to take Nyquil, "for those times when you have the flu and you just HAVE to go to work the next day........." ARRRRRGGGGGGGGGGGGGHHHHHHHHHHHHH!!!!!!!!!!!!!!!!
So we are continuing our hermit status.
Today some new friends of ours, the Roberts, took Theresa and Zoe on an "adventure". They picked them up and took a bus into the downtown, ate at the Galleria, rode the trolley and rode the glass elevators and long escalators at the Hyatt. They were so thrilled!!! What a fun day for them. Of course they just had to go rest up in the new beds as soon as they arrived home. What a neat day.
Sunday, January 19, 2003 at 01:03 PM (CST)
Wow, want to know a sure fire way of getting the kids to bed? Change the bed style!!! We got a bunkbed set for the two older girls who have slept together (rather incompatibly) for the past year in a full size. I mostly wanted more space in their tiny room. They LOVE the bunk beds. They have even been enlisted to make their own beds, which is very good because making a fully "guarded" top bunk is very difficult. Today after church Theresa only ate 2 bites of her sandwich before announcing with a big dramatic yawn how tired she was, could she please be excused to go nap? Ordinarily this kind of comment could prompt a trip to the ER, but knowing it was the novelty of the bed made it pretty amusing. She and Zoe played "nap" for over an hour!
I can't wait until Chris finishes our new dresser. Then the girls will share our old one in their room. Finally some space. All their playmobil can go THERE out of Ingie's reach.
Tomorrow is treatment 4 of cycle #3. Yay. I wonder if I'll have to do any more neupogen this cycle. I kind of think Dr. Dannaher wanted me to just take enough to get me to finish this cycle. We shall see. I will be glad for the break this time. My hands and feet are pretty icky from the 5FU/leukovorin effects. I have also finally graduated to the erosive effects in my mouth. Sorry for the lovely imagery, people ask, so there it is. I still have to say it is way easier than I thought it would be.
Friday, January 17, 2003 at 09:07 PM (CST)
FINALLY the headache has gone completely. 2 and 3 day long headaches are so tiring. I had this rush of energy afterward, fixed the vaccuum, did the floors and cleaned up the girls' closet. Gotta take the energy when you get it.
I have finally gotten a handle on picture shrinking and put up a couple on the photo page. Check it out! Theresa and Zoe are quite the free spirits when it comes to dressing. I have decided it isn't worth fighting for matching outfits some days. Ingrid was so captivated by the wire halo after her nap today I just had to take a picture.
So far no real complications from the shots. My bones don't hurt yet. They tell me that they usually hurt when your counts start rising. I just have some lovely bruises. The girls were fascinated watching me give my shot today. Theresa was sure it hurt.....Zoe was concerned I might cry. It really didn't hurt, but they weren't convinced.
Tonight as I put Zoe to bed, she said a little prayer for me after her Our Father. Then she kissed me and said she'd give me a butterfly kiss since I can't without my eyelashes. We bumped heads..."mommy you sure have a hard head..." Silly girl.
Thursday, January 16, 2003 at 06:59 PM (CST)
A simple prayer at breakfast this morning. God please make the insurance quick in answering about my shots. I went early for my 4th day in a row to the CBC office. Heather greeted me with a cheerful, "Oh, hi...the insurance approved it for you to give your own shots." Hallelujah! Going to the office every day has been quite tiring. I got my shot this morning and they sent me with my last dose for the week. If I need more next week, I won't have to come in. yay.
I have had a headache for the past 24+ hours. That is very tiring. I really don't know why I have it and I don't care. I am leery of taking alot of NSAID (motrin type) meds because I also take coumadin (blood thinner). The motrin helped some but my mom coming and keeping me company today helped the most. I shall hope and pray exhaustion will cause me to sleep tonight and the headache be gone. The one benefit of this is that I am barely aware of feeling nauseated.
Theresa was playing much of the day with her soft bunny house. "I'm taking a trip down memory lane Mommy!" and "I got so involved in what I was doing!" I am so glad our girls have the luxury of much unsupervised free play.
I am working on a photo to post. Hopefully in the next day or so.
Tuesday, January 14, 2003 at 07:58 PM (CST)
I am tired. Just about the worst thing is when Chris has an away job the day after my chemotherapy. The girls where whiney, especially Ingrid. It's like water torture.
I went to a seminar at the doctor's office tonight. Rather adynamic compounded by my fatigue. One of the nurses was there. She suggested I check to see if my insurance will cover the neupogen if I take it home and give it to myself. Gee I would have appreciated knowing this was an option yesterday. I shall check it out soon. Going in every morning could get quite old.
Thanks to everyone for the dinners and help. We do sincerely appreciate it.
Monday, January 13, 2003 at 08:54 PM (CST)
Chemotherapy day #3 of cycle 3. Today my hematocrit has been "fixed" by procrit (epigen) and niferex iron. I am a whopping 37.8. I have not been that high since before Ingrid was born. Now, my white count is dropping. The total is about 2 (normal is 4-10) and the absolute neutrophil count (ANC) which tells about the infection fighting part of the cells is 1100. The magic number to be above is 1500 for receiving chemo. Dr. Dannaher said they would like me to try getting my full dose of CPT-11 and accessory meds today and begin Neupogen (filgrastim) which assists your body in building the right parts of the white blood cells. So I am off the Procrit (Epigen)and onto neupogen. The current short term goal is to get me through this cycle and then get the two week break to rebuild or drop or whatever I do then.
I feel like the Monty Python skit...I'm having complications of my complications.
I am tired, nauseated and achy. The neupogen also causes bone aching. I begin daily doses of it tomorrow am. Some days I wish for the old days where you got chemo in the hospital. Then I could get a glorious IV injection of some strong narcotic and go to sleep fast. However, life is still going on here at home so we make do with what is around.
I often want to cry on chemo days. I don't really know what about. It's just there.
Friday, January 10, 2003 at 08:39 AM (CST)
Yay, the computer is fixed. My it sure does zip along when you up the RAM by 512K. This new operating system is pretty nice also. I am so glad it was easily fixed.
It was so beautiful the past 2 days, it is hard to believe how cold it will be now.
Mom and Dad came with dinner last night. What a relief. Although I get around and do stuff, it is with a blanket of generalized nausea most of the time. I can eat but nothing sounds good. Shopping while nauseated is a bit like shopping when very hungry.....don't do it, not a good idea. I'm going to have to go back today to get the various things I could not imagine buying yesterday.
Thursday, January 09, 2003 at 07:58 AM (CST)
Thank you Susanne for the loan of your laptop while our iMac is in the MacHospital. They seem to think the problem is not terminal. I hope so. I kept trying to keep the experience in perspective but I swear I was not handling it as well as hearing I had cancer a few months ago.
I guess the medication in my chemotherapy has a cummulative effect. I get a little more nauseated with each session but I really am not a puker, so it doesn't come to that. I eat a lot of phenergan these days. Nothing else seems to help that much. Alot of it is mental, I think of something and it makes me feel bleah. I try not to think. It's very much like being first trimester pregnant.
The solo trip to chemo went well. I didn't feel too bad but I guess I was a lovely shade of white the rest of the day.
Mom and Dad arrived back from Utah safely. Sounds like it was quite an adventure. I am glad there was no bad weather to speak of.
Ingrid is walking virtually anywhere now and climbs a LOT! Her new words, "bum" and "boo" are repeated often. This climbing development is not one of my favorites. I am not ready for this.
Tuesday, January 07, 2003 at 11:47 AM (CST)
Chemo visit went all right as usual. I did not notice a big difference without the ativan. Mark was my nurse. I prefer the way he inserts the central line, fast and done. The others do it sort of slowly and it is painful. I was very nauseated and achy last night. Today I'm better with my glowing post chemo cheeks.
I am typing this at the local macintosh store while I wait for updates to my computer. We installed OS X and now NOTHING works on the computer. It will not even come up. Blank grey screen. Anybody out there with some real help? PLease call us. PLEASE... I'll feed you and kiss your feet.
More someday when I can get online again.
Sunday, January 05, 2003 at 07:29 PM (CST)
Well, Theresa returned safe, sound and VERY tired yesterday. Apparently they were up until midnight. She normally is in bed by 8pm at the very latest. So, she was still pretty tired today. We caught her nodding off during dinner.
Chemotherapy tomorrow. A new first. I am going to take myself. I may have them omit the IV ativan. It really does not make me drowsy but just in case, it's probably a good idea to avoid taking it.
Friday, January 03, 2003 at 10:25 PM (CST)
Not much to say this week. I am taking iron in hopes of correcting my iron deficiency. Perhaps I can have refrigerator magnets stuck on me.
Chris says this cycle seems harder on me. I think I am just tired because of being home with the kids and not getting out much. Ingrid's spots are gone. Luckily it was short lived. She also has at least 2 new teeth.
I am adjusting to having Chris gone in the day time. He has an "away" job this week and next. I get spoiled having him around in the day. Theresa and I have made countless keychains from itty bitty pieces of plastic tubes that are then ironed. Crafts are excruciating for me, mostly I don't do them. However Theresa loves them. Zoe wants to be around but is not inclined to actually "do" most craft things. She likes to squeeze prodigious quantities of glitter glue on paper and smear it around. Ingrid just crawls about and tries to grab things off the table.
Mom and Dad went off to Salt Lake City on short notice today. Those crazy kids! Dad drives cars for Enterprise. I pray they don't encounter weather problems.
Theresa had her first overnight at a friend's home tonight. Zoe was very glum about it all. She has no memory of a night without Theresa. On our way home she said in her dramatic tone of voice, "Oh Mommy, will we EVER see Theresa again?" big sigh....
Tuesday, December 31, 2002 at 08:32 PM (CST)
I have always found the modern celebration of new years to be a bit depressing. I can't see what all the fuss is about. It is a date set rather arbitrarily and so many people get really hung up on it. Our plans are pretty quiet most of the time.
Bob and Joan, Chris' parents stopped in this afternoon/evening on their way to their annual flight south to Gulf Shores Alabama. It as good to see them. Usually when we go up there it's for some big family event (you can't have a small family event with the Krauskopfs) and we don't really get to just talk and let them play with our kids.
Ingie has been rather fussy today and yesterday and I have been vigilantly watching for cause. She looks like any day now about 6 teeth are going to come in. One is VERY close. The other thing I have been very concerned about is that she might have the rare but potential outbreak of chicken pox from her chicken pox vaccine. This morning I saw a spot on her lower abdomen and one on her forehead. By this evening there were several over her abdomen and back. The pediatrician is more worried than my oncology group. The onc says that it's unlikely that I would get shingles but just to watch. I sure hope I don't and I do pray this is a short thing with Ing. Nothing like a little fun.
I felt pretty bleah last night on my first treatment after being off for 3 weeks. I am tired today but what's new about that. Dr. Kommor called me today to confirm that, yes, I am iron deficient. So, keep taking iron.
That's it for now. Prayers to all for good health and a Happy New Year.
Sunday, December 29, 2002 at 07:42 PM (CST)
Well I shall try to get chemotherapy tomorrow. My neutrophil count needs to be high enough to get me through the whole cycle. I'll be interested to see how my body reacts. This is the longest I have been off chemo since beginning at the end of Sept.
My sister, Johanna and cousin, Mary came to visit yesterday along with Jo's girls, Emily and Elizabeth. Jo brought me the most beautiful picture. I so rarely have seen her work. It's incredible. There's quite a bit of depth, sort of like a Georgia O'Keefe painting. I am continually amazed to see me neices so grown up. I remember them as my girls' ages.
The girls went to mass with us today. Theresa is actually following mass now and sings most of the songs/responses. It's so neat to see her pick this stuff up. Today during the Kyrie, her little soprano voice rang out just ahead of everyone's, "Lord have mercy". I need to get her singing and using that voice for something more than ordering her sisters about.
My sister in law, Linda called tonight to tell me about a friend of hers with colon cancer. She's my age with 2 children my age. Sigh.....apparently we aren't too young. Please pray for her.
Friday, December 27, 2002 at 01:34 PM (CST)
In a coat Theresa received for Christmas was a patch. I think it came with the coat, but I suppose someone could have ironed it on. It is a heart with the following written in it:
You make some decisions with your heart,
others with your mind.
But every step you take affects your life.
Look which way your're going.
Be safe
stay warm
Neat eh?
I was reading alot online last night about my chemotherapy regimen. Gee I am glad I did not read it before receiving it. I am in the minority being an under 40 year old female with advanced colon cancer. So, I don't fit most of the medical risk models. Thank heavens. I always wonder what dictates the regimen they choose. I am thankful I am being treated aggressively even if my hair goes away, even if it makes me prematurely menopausal. Life is better than temporary hair loss or permenant infertility for me.
Thursday, December 26, 2002 at 01:31 PM (CST)
An online acquaintence said there's nothing as sweet as a 6year old at Christmas. I have to agree, although, adding a 3year old to the mix makes it all more fun.
We had a wonderful Christmas. The generosity of others overflowed our home. We joked we were going to have to get a new home to put all the gifts in.
Ranking #1 and #2 were the dolls and ponies. There are so many fun craft projects and books for us to discover. Of course there are some great outfits for the girls. Another big hit was from someone who sent bath ecoutrements for the big girlies. They simply HAD to bathe last night.
Cantoring at mass went well. (and my hair is still there.) I was so thankful I did not have to wonder how I'd feel. I am glad we opted out of chemo this week. I hope the counts are high enough to do it this week. We shall see.
Tuesday, December 24, 2002 at 08:16 AM (CST)
Ok, here's the whole story.
Yesterday Chris and I went to my normal chemotherapy and doctor visit (I see a doctor at least once monthly). Dr. Grimaldi was at the hospital for other business so I got to see Dr. Kommer. What a great guy! He was so nice and quite informative. He came in and began in this discussion of how intense my chemotherapy regimen is and how rarely they use it, etc... I made me usual comment, "It really isn't that bad" Then I asked what my counts were. I guess I trumped his big lead up. Well my red cell part is up slightly and the white count is up a little. Then I asked what my ANC was (this calculation tells you about the true infection fighting capacity of our blood) "That's the crux of all this" he said, "Yours is 1050 and we like it to be over 1000 to receive chemo." He explained that while I am on the rise, I am not in an ideal state to restart the cycle yet. He strongly encouraged us to wait till next week and see if the counts are high enough. In the long run it would nto be a big wait. Besides that, if I began and my counts really plummeted as expected, I would be in worse shape and might have to add another cycle to the end. Bleah. So, we opted for no treatment. I am glad because I was a little concerned about this issue and the issue of singing Christmas morning 2 days after chemo.
Additionally we discussed my chronic anemia and began iron again in a different form than I took preoperatively. Hopefully this will allow the Procrit to be more effective.
SO, I am chemo free for another week. I received my "liquid platinum" shot of Procrit and Chris and I went to finish some shopping.
Oh, Dr. K also showed us the CT film. The lymph nodes/tumors were 2cm in size when I began therapy. The interim scan showed they were 1.2cm. Because I am headed in the right direction and responding well to chemo, it was further evidence that waiting a week was ok.
Yay. Merry Christmas to all. If you are in town, we'll be at 930am mass. Pray my thin hair holds out until then :)
Saturday, December 21, 2002 at 08:30 PM (CST)
I keep meaning to post this and then getting distracted.
I had my interim CT scan and Chest xray this past Monday.
Dr. Grimaldi called us at home Thursday night. He said he had just reviewed my scan and the lymph nodes/tumors are getting smaller. He said that they were not very big to begin with but are much smaller now. Good news... we are going in the correct direction. I shall post more after our visit Dec 23 (Monday) with him.
Thank you for your prayers. It would appear they are working. Now I guess I need to lay an image of Mother Teresa on my abdomen also :)
This time last year I was in the last part of my labor with Ingrid. She had her 1st birthday celebration with her godparents, Milly and Norman Flowers and their children. Ingrid was very firm about the fact that she did NOT want to feed herself that messy cake! She actually took the plate and handed it back to us. Of course she polished off a good helping of cake and ice cream. She does love dessert.
Praise God for answered prayers and for a wonderful year.
Wednesday, December 18, 2002 at 09:55 PM (CST)
Christmas tree was put up today. We gave in and went artificial this year. It's worth the effort and lack of needle mess. However it capsized with the weight of a 3 and 6 year old's decorative efforts (as in 3-4 ornaments on one branch).
The camera is great fun but I don't know how to make the size of the photo small enough to put on the page yet. We have Adobe something but it changes the format from jpeg, grr. If anyone knows how to solve this problem, let me know. Then I can post some pictures.
Next "holiday" in line is Ingrid's birthday. AMAZING, she is ONE on Saturday.
Monday, December 16, 2002 at 07:56 PM (CST)
I received a very special email from a local friend recently. It is so good to hear from her and about her relationship with her daughter. It's things like that which I treasure and make me look forward to my girls in their teen years. You hear such an onslaught of negative press about teenagers. It was refreshing.
I had my weekly visit to the CBC today. My blood count is not rising (it is now 31, down from last weeks 33 and the white count is 2), it is falling. Before you get all concerned, this is not really bad. The nurse said the rise last week was more the exception than the rule. She said most people's counts do not make the dramatic rise until after dose 3 of Procrit. I got dose 3 today. I feel pretty good physically.
I met Kevin (one of the staff members at CBC) at the coffee maker today and he offered me some of the fabulous smelling coffee. For once I had a snappy reply, "No thank you, I really prefer to have a nice BIG bottle of barium sulfate to get my Monday rolling...." I was on bottle #2 of the required liquid for my CT which was later this morning. He got the humor right away. I just love the note on the back of the bottle.."a pleasantly flavored drink...." BLEAH On top of it all, it has sorbitol as a sweetener-sorbitol causes increased gastric motility. Lovely.
I will hear the reports next week.
Saturday, December 14, 2002 at 07:40 PM (CST)
Last night I watched the movie version of the Divine Secrets of the YaYa Sisterhood. I am reading the book, which is much better. Overall I was depressed by the movie which kept me awake till 230am. However there is a part in book and movie where the main character, SiddaLee, relates how her mother made birthdays special. It included her whispering in Sidda's ear, "I am so glad I had you."
Theresa, our oldest, is 6 tomorrow. What a nice age. Tonight as Chris put her to bed, he said, "I love you very much and have a good night's sleep. I'm glad you're my oldest daughter." And she said, "I love you too. I love my sisters too and I'm glad that they didn't die before they were born like Riley or or just after they were born, like Uncle Kent and Aunt Linda's Sam." (Riley was the son of one of my clients-we believe in telling them the truth about life and death). What a neat thing for her to express. It's so amazing to watch your kids grow up.
I think I'll whisper in her ear tomorrow.....
Friday, December 13, 2002 at 01:10 PM (CST)
The girls went with two of our friends on a special Christmas trip to Build A Bear. The returned full of excitement and stories of how they got to create their stuffed dogs, pick out their clothing and all that stuff. What a cute idea! The girls love their new toys! Thank you so much Melanie and Donna H!
Chris and I decided our gift to each other would be a digital camera. We decided to go get it this morning while the big girls were out. That way we can fully use it for the upcoming double birthday festivities and Christmas. Look for new pictures coming soon!
I realized yesterday as I sped up the stairs that I was not huffing and puffing as much as usual. Woo hoo, maybe my hematocrit is up to 35 or so. They give the Procrit until my hct is up to 37. I haven't been over 37 in 2 years. (I know this from trying to give blood--you have to be 38 or above....and from pregnant lab work).
I picked up my CT and Chest films to take with me on Monday. Chris and I taped them to the sliding glass door to view. How odd to see yourself in detailed slices.
Wednesday, December 11, 2002 at 07:33 PM (CST)
For those of you who have perservered, the caringbridge server is working better now. I received this note from caringbridge yesterday--"A problem with the image generation has led to CaringBridge using too many resources and making the CaringBridge server 'unavailable'". So, you weren't crazy, it even refused me entrance a few times.
The season of advent is upon us and with that comes the season of Theresa's birthday. The exuberance of a nearly 6 year old child is exhausting at times. She is telling everyone she meets. Yesterday was her annual shopping pilgrimage with my brother and sister-in-law, Uncle Kent and Aunt Linda. They apparently have a ritual which involves a rapid dash through ToysRUs (in which Theresa insists on getting a new Barbie and leaving asap) then to the gourmet choice, MacDonalds and then to Oxmoor Mall. This particular trip had a new feature that came about rather spontaneously. I guess they were making wishes at the fountain and Theresa saw the Santa and sort of waved at him. Santa asked her to come over and tell him her Christmas wishes. She only asked for one item and left with half the candy cane saved for her sister Zoe. Cute.
We got some shopping done for a couple of key items today. Tonight, Theresa and I set up a new nativity set from Kent and Linda. It is quite nice. It's a family devotional book with paperdoll punchouts for characters. It's called Build Your Own Bethlehem. I am excited because it is educational as well as entertaining. With our home education, it ties in so nicely.
My hematocrit was 33 on Monday when I got Procrit shot #2. That is up from about 30. It must be rising well now because I have pretty good energy today. I can climb the stairs w/out stopping to pant. Of course no improvement is w/out some wierdness. You would think that symptoms consistent with the chemo would be highest when I am receiving drugs, but for the second time while off drugs, I have experienced an increase in the peely, cracked sore palms and fingers and lack of taste/burned tongue feeling. That 5FU is interesting stuff. Heck, whatever works.
Monday, December 09, 2002 at 01:21 PM (CST)
No chemotherapy cocktail today but I still had to go to the oncologist's office for a Procrit shot. Nifty medication. I causes my body to go through the process to make more blood cells. It really hurts for such a small shot. It didn't hurt last week. The nurse says most people say it hurts.
I took Zoe and Theresa with me. That was more draining than getting a dose of chemo meds. They did all right and certainly charmed the rest of the waiting area with their conversations.
T and Z had their first dental appointment today. They were so cute. They enjoyed themselves and I bet the dentist was glad he could put cotton and a suction catheter in her mouth. I could hear her talking to them often. Zoe was so cute....she went right back in all alone which surprised me. She was so thrilled to get her Elmo toothbrush.
Saturday, December 07, 2002 at 09:19 AM (CST)
Things move along at a "normal" pace for us, which is probably very slow to most people nowadays. I had the chance to go to a friend's home last night for a get together. It was fun to have some wine and talk....alot. The medication I take for symptoms makes me more sound sensitive, so I finally left about 10ish.
I could drone on about symptoms but none are unmanageable. I sure use alot of lansinoh on my peely hands.
The girls drive me nuts to go out in the snow, only to want back in within 30 minutes. Ingie wants to go out with the zee's. She bangs on the sliding glass door at them. She is so close to walking.
People continue to amaze us with generosity of time or help in various forms. It is truly humbling.
Wednesday, December 04, 2002 at 01:19 PM (CST)
It looks like a giant snow globe outside (borrowed that from an online acquaintence). The girls are hoping the snow will stick so they can go play.
I am tired but not sick which is good.
Monday, December 02, 2002 at 07:37 PM (CST)
Half way through chemotherapy. I feel like a chemo/cancer patient today. Kinda too full, slightly nauseated. I am also anemic (I have been for the past 3 wks) but now the level of myelosuppresion (decreased function of the bone marrow-makes blood cells) has reached the stage where I need to get Procrit. It's sort of a sentinel event they look for, so, while it is not pleasant, it does mean my body is responding.
It used to be that you eventually had to have a blood transfusion. Now with Procrit you get a shot that helps the body build more red blood cells (one of those things that olympic athletes can not take). I will get it weekly till my count goes to 37. Gee whiz I haven't been 37 for over a year. I won't know what to do with all my energy.
Anemia can increase tiredness, shortness of breath and increase depressive symptoms/irritability. That would be me. I think I have always been sort of dysthymic (low grade depression) but the anemia doesn't help.
I slept a bit this afternoon.
Ing is trying so hard to walk like her Zee Zees
Sunday, December 01, 2002 at 08:50 PM (CST)
Tomorrow will be the last treatment of my second cycle. Half way mark, yay.
As always I am not really feeling all that sick. There is the intermittent/constant low grade nausea and feeling of being tired from time to time and some degree of insomnia intermittently. I am glad I have ambien available. Good drug.
I spent most of yesterday and some of today weeding through boxes of STUFF in the basement. There are currently 5 large box loads of old STUFF to be donated to the landfill on Tuesday (why did I keep all that stuff on GYN infectious diseases from work? sheesh). There are 4 boxes of various sporting things of Chris's to go to the garage attic and all the girls clothing is consolidated. I have a fair quantity of 0-12 month girl clothing (2 plastic bins) that corresponds mostly to a child born in the midwinter or early spring that I'm going to part with sooner or later. I love getting rid of things. Very freeing.
I was thinking last night, as I held Ingrid for a late night bottle that there is nothing like the serenity of looking into the face of your sleeping child in your arms.
Friday, November 29, 2002 at 03:39 PM (CST)
This song has been running through my head a lot lately. It has lovely music also.
Why Worry
(Written By Mark Knopfler)
Baby, I see this world has made you sad
Some people can be bad
The things they do, the things they say
But baby I'll wipe away those bitter tears
I'll chase away those restless fears
That turn your blue skies into grey
Why worry, there should be laughter after the pain
There should be sunshine after rain
These things have always been the same
So why worry now
Why worry now
Baby when I get down I turn to you
And you make sense of what I do
I know it isn't hard to say
But baby just when this world seems mean and cold
Our love comes shining red and gold
And all the rest is by the way
Why worry, there should be laughter after pain
There should be sunshine after rain
These things have always been the same
So why worry now
Why worry now
Thursday, November 28, 2002 at 07:21 PM (CST)
So, it’s Thanksgiving and we all say thanks for all that usual sort of stuff...family, friends, health, prosperity, love, yadda yadda....
Yes, I am thankful for the surgeon who helped save my life and perhaps more so for the inventor of the PET scan which is helping me toward a full cure by recognizing some micrometastases. (thereby justifying a more aggressive chemotherapy regimen.)
But when it comes down to the base level, I am truly thankful for electricity, clean, plentiful water and food, virtually instant heat or coolness, a car that runs well and all those things that make life in America so good.
I am thankful for parents who decided to move close to us. It has made this whole family-with-small-kids thing so much easier. It has made this family-with-small-kids-and-a-mommy-undergoing-cancer-treatment thing VERY MUCH EASIER. It has also allowed our children to have a close and loving relationship with another generation of our family. I shall never be able to adequately thank Mom and Dad for moving near to us.
I am thankful that on Jan 5, 1997 Waste Management of Louisville decided to lay off Chris (about 2 weeks after our first child was born). This caused him to pursue his dream of self-employment and forced me to accept it. I am thankful for a dear friend who turned over his handyman clients to Chris to create our income while his woodworking business became more profitable (and less hobby). I am thankful for all those local residents who have trusted Chris to fix their homes, install their fixtures, clean their gutters, paint their homes or build their heirloom furniture. I am thankful that his self-employment allows our girls to be raised by both their parents equally. I can not imagine how our life would be right now if Chris weren’t so available to us.
I am thankful for whoever invented this lovely place called the World Wide Web that has allowed me to "meet" so many interesting people and communicate with family and friends more conveniently.
I could go on and on, but you get the idea.
Oh yeah, and I am thankful I’m me right now.
Wednesday, November 27, 2002 at 12:55 PM (CST)
I called the oncologist's office yesterday for the funniest thing. I was concerned perhaps they did not give me all my chemo meds (cheifly the 5FU) because I could taste virtually everything normally. Woo hoo, what a joy! The nurse on the phone assured me she was the person who did indeed give me the 5FU in addition to the other 2 meds. We had a laugh about my "complaint" of being able to taste normally.
I celebrated by making one of my good dinners since I could taste. Scallops sauteed in olive oil and wine with some vegetables on rice.
Today tastes are a bit off but not bad. Gotta rejoice in the small things.
I spent the better part of this morning sorting through a gazillion boxes of girl clothing trying to get rid of any we will no longer need. Anyone having a baby girl soon?
I am hoping to get the big girls bunk beds for Christmas. They need some room in their bedroom which is currently full of their combined full sized bed. I spent the better part of an hour about 4am pondering this since I could not fall back asleep. Geez the things I think of at odd hours....
Monday, November 25, 2002 at 09:30 PM (CST)
Treatment 3, cycle 2, one more treatment to go in this cycle. As usual it went along allright.
My current prevailing symptom is very similar to being 1st trimester pregnant. I have a low level nausea and distaste for the thought of food. However I find most of the time if I just get my backside up and get really involved in cooking, I will eat it. Of course an hour later I feel too full and nauseous, but there's always phenergan.
The nurse today gave me a sample of torecan to try as it is nonsedating. The phenergan doesn't really make me groggy but I feel a bit less internally straight. I nearly called a friend to ask for some samples of zofran a couple of days ago. I am highly opposed to puking and that has not been a problem, thank you God.
Ingie now stands on her own several times daily amid loud cheers from her big "zee zee's" (that would be her term for the sissies). No steps yet... I am hoping later, not sooner.
This week's blood count (H/H--iron level) remained stable and low, but not at a treatable level. I get short of breath. My white count (infection fighting power) dropped but not to a dangerous level as did my platelets (clotting).
I felt strangely sort of like crying today at chemo and I don't know why. There are now a regular group of people I recognize which makes it feel more like home. I still have yet to see more than the one younger person there. Most are markedly older than me.
Friday, November 22, 2002 at 07:40 PM (CST)
I always hesitate to write about my physical status for fear that I will give the wrong impression. It's so hard to answer that well meaning but useless question, "How are you feeling?" On one hand I'd like to blow some people out of the water with exact clinical descriptions of all of this and on the other hand I want people to know in a relative sense all is well. Honestly, this treatment for and experience of cancer is so far removed from my former fears (prior to diagnosis) it's almost unrecognizable. Most of the time I just have this low level amount of symptoms. It's not enough to keep me from doing what needs to be done, although there are times when I just wish I could go somewhere quiet with no noise or distraction. That really is rare.
Today I was a bit tired. Last week I noticed this at the end of the week. My hemoglobin/hematocrit (level of iron in blood essentially--what is measured to assess anemia) was lower than it had been. It was much better than most people on chemo and not a treatable level. Today I felt that way again, sort of a bit more easily tired and short of breath. It sort of feels like one of those dreams where you are trying to do something but it feels like you are moving through molasses. I find on these days I need to keep doing something or I will feel depressed at the end of the day.
I'm interested in seeing the CT scan I will have done in December. We opted to not do a repeat PET scan until the end of therapy. It is not worth trying to get insurance to pay for it. There is no reason to think the remaining lymph involvement will not be knocked out, but it's still nice to see it gone.
Wednesday, November 20, 2002 at 09:04 AM (CST)
Today I was awakened by a very excited Theresa. "Look mommy what I found under my pillow! A letter with my name on it!" It would appear that the tooth fairy looked favorably on her note she wrote. (Theresa wrote a very neatly lettered letter explaining that she must have swallowed her tooth). We opened it up and there was a letter from the fairy herself complete with a glittery dollar! Theresa was so thrilled. She showed it to everyone. One of those sweet moments.
Shortly after the letter incident I hauled out of bed and ate my bowl of Crispix which is now rendered totally devoid of flavor compliments of the 5FU (I am told). While I ate, I looked at the mail. Sadly I realized I had to do something I regretted.
After a series of misdials I finally reached our local Bone Marrow Donor program at UofL. Many years ago I got on the volunteer donor list through a US Navy grant. I was even called on two occasions to go through second round testing for a specific person who needed marrow but I did not make the final cut. Today, sadly, I had to tell them as I did the Red Cross, to remove my name permenantly from the donor list. Most cancers make you an automatic defferal. It's sad because I always wanted to do that...to make a big difference in someone's life; someone who never knew me but needed what I could give. So please, anyone reading this who can, please hunt down a local center (www.marrow.org) and get yourself on the donor list, especially if you are of some sort of minority. If you can't find a place or they are not collecting free of charge, please consider giving blood or platelets at your local Red Cross. It's so easy and so many people need it.
Tuesday, November 19, 2002 at 09:17 AM (CST)
Well, big news in the Krauskopf home! Theresa has officially lost her first baby tooth! Unfortunately she knows not where. She insists she did not swallow it in her sleep but I can't find it so she probably did. We wrote a letter to the tooth fairy, complete with a picture of the missing tooth, explaining the situation and hopefully she will still leave something special.
Last night Kathy came over for bedtime routine help. Thanks so much. It is especially helpful to have someone there on Monday and Tuesday nights. I just feel a bit beated down then and achy. Thanks also to my new friend Kristi who consistently brings things our children will eat. What a loving and generous spirit. God meant for us to meet that day at the zoo.
I spent the evening on the floor doing one of my passions--coloring. I like to color "adult" coloring books such as the ones by Ruth Heller (Heller designs) and Altair designs. They are computer generated and very complex. It's more satisfying to me than cross stitch or similar. I can watch tv and do it. Of course colored pencils are the best to use with these. I think I'll ask Santa for some new books since mine are almost full and a new big set of Berol Prisma colors. No other colored pencils work as well.
When I finally could not stand the nausea or achiness I took some phenergan and went to bed. I remarked to Chris last night, "I look like someone on chemo". I was sort of pale (more pale than my normal) and had dark eye rings (darker than normal for me). Ah but today I look once again like an add for poor makeup application! Rosy Rosy hot cheeks for a day. Love those drugs.
Ingie is disassembling the kitchen and living room. Bye for now.
Sunday, November 17, 2002 at 07:54 PM (CST)
Busy weekend for us. Friends from my local doula group, Birth Care Network, organized a benefit concert for us. What a loving and generous thing this was. Thank you with all my heart.
I must say that there are times when the attention to my saga and me is almost embarrassing. I am not sure what to say. I just do whatever needs doing at the time. It’s not about being superhuman; it’s just about living in the way we all should be, with or without a big problem to goad us onward.
The concert was intimate and very moving. Jason Kennedy, a local singer did the music (his website is www.jasonkennedy.com). He is such a nice man with a genuine and gentle spirit. We were going to abbreviate the concert and reschedule because the poor weather and timing of the concert took its toll on attendance. However, as he began singing, we just let it go where it led us. The pastor (and his wife) of the church where we held the concert asked if Jason and I would return for their regular service today. We returned and it was a joyous and meaningful time. I spoke for a few minutes about what I have learned and I do hope it spoke to at least a few people.
What have I learned through my experience thus far?
I have learned in a very hard way to trust God and stop worrying.
Worrying does not empty tomorrow of its troubles....
It empties today of its strength.
All my life I have been a champion worrier. I often used to joke that people could hire me to worry for them. It disturbed my sleep, prevented me from doing several things I wanted to and invaded my every day thoughts as a mother and wife.
Yes I spent the better part of 8 months worrying that I could have cancer but not acting on that concern, just worrying.
Then it was there…. I had to deal with it, and could no longer afford the luxury of worrying about it. I had to now learn to stop worrying and start acting. I have often said to people that if I had known ahead of time that on Aug 30th my life would change so dramatically by the diagnosis of cancer, I would have probably had a nervous breakdown. You know, I have heard all my life about letting God take control….all those hokey, honey laden sentiments about "Let go and Let God…" or "don’t sweat the small stuff" or similar. But there really is truth to it. Worry will not change a thing.
Chemotherapy effects not withstanding, I can honestly say I feel physically better than I have in over a year. However, the biggest accomplishment is that I finally can hold in my heart that God loves me, He is in control and He is to be trusted.
His eye is on the sparrow.
Thursday, November 14, 2002 at 12:26 PM (CST)
Zoe and I walked to the Dollar Store today. It's still warm but they tell us it may snow by weekend. Yikes.
Miss Zoe and I enjoyed picking up leaves and looking for the ducks in the creek. Of course there was much 3 year old stream of consciousness conversation. I like to spend time alone with her at times because often is quiet when Theresa is dominating the conversation. Zoe has a great sense of humor and talks alot when she is alone.
We made a pass through the local salvage store just to see what was in there besides emphysematous coughers. She caught sight of some big dog toys. She announced to me, "Mommy, after your cancer is healed, we are gonna get a new dog....." Oh no. I am not ready for that. Of course later she also announced that she was ready to get a Ragdoll cat... "They are the most friendliest cats Mommy." Luckily 3 year olds also don't have a good sense of time. It's going to be quite a while before I am ready for a pet other than Ariel the betta fish.
Wednesday, November 13, 2002 at 07:32 PM (CST)
Today was so unexpectedly nice outside. I was hesitating on going out for some errands when it dawned on me that I should just go do it. I realized I can not count on feeling good the next day. I was just getting used to that feeling good thing while off chemotherapy. Then I got to thinking as I cleaned the bathroom... I really should think that way at all times. Heck, we don't know from day to day how things are going to be so why not do, say, act on that feeling today? Gee I feel so profound at the moment.
Of course the girls go a long way to keep us all in the present. It's hard to be morose or even very deep in thought with 2 girls arguing the merits of one disney video over another, and the baby slowly disassembling the computer desk. About half the icons on our computer desk top have new names such as ??????? and ////// and OOOOOOO. Silly baby.
Our freezer is pretty full currently due to the generosity of many friends and my own ability to put some things in there this past week. Thank you everyone.
Wednesday, November 13, 2002 at 09:05 AM (CST)
For those who asked about details for the concert:
Benefit concert for the Krauskopf Family by Jason Kennedy (contemporary Christian singer--website www.jasonkennedy.com)
Take I-65 North across the Kennedy Bridge to Exit 4
Turn RIGHT at the exit
Then turn RIGHT at First Light Charlestown-N.A.Pike
Go about 1.3 miles
Covenant Life Church is on the RIGHT
2326 Charlestown-New Albany Pike
Concert begins at 7 pm November 15 (this Friday)
Free admission, CDs for sale, donations at a collection
A big thank you to Vicki Sanders for coordinating this and to Trina Jackson for the location.
Tuesday, November 12, 2002 at 02:52 PM (CST)
A whirlwind trip to Muncie this weekend. Chris's parents' 50th wedding anniversary party was Saturday. We spent the weekend with friends. It was nice to get away but very tiring. The girls went to bed way too late and Ingrid developed probably allergic snotties, ew. However, it was nice to see everyone at the party and the next day. We were on the leading edge of all the storms. It was pretty dramatic. It was good to come home.
Chemotherapy commenced yesterday. It is sorta like going somewhere really icky to see someone you like. You feel so good and know you are not going to after the meds. It was not too bad this time. I could feel the achiness creeping down my legs again. I actually had an appetite last night which is good because Nikki and Alan (former clients of mine) brought dinner. It was wonderful.
Dr. G and I discussed what to expect in the coming months. The plan as I understand it is to complete the total of 4 cycles (4wks on 2 off). After this cycle, on the 16th I'll have a repeat CT scan and chest xray to monitor my status, oh joy. At least it will be at Baptist East hospital instead of that other east side hospital down the street. I simply relish the idea of being without food over night and then drinking 800 or so cc's of contrast, BLEAH!
Hair is still there, though thin. Most people would not notice but I can.
I will post details about this Friday's concert for anyone interested. I know it is at 7pm and the church is in the Jeffersonville area of IN.
Tuesday, November 05, 2002 at 08:06 PM (CST)
Nothing much exciting or bad happening, yay.
My dear dentist had a heyday this week cleaning and filling and removing old fillings. Someone asked if it hurt... no not really, heck so much is relative isn't it?
Ingrid has spent two blissful days with my mother all alone while I was at the dentist. She looks so smug when she is there with no big sisters in her way. She is learning the word NO. She crawls to some place she should not be and all the while she is singing, "Nah, nah, nah...."
Donna came to play with the big girls today. She is such a gem and the girls love her. It was all the talk today, "Mommy when is Miss Donna ever gonna get here?"
Warning: dark cancer humor alert!
Today as I was rummaging through my closet for something to wear to Chris's parents' anniversary party I came across a black number I liked. Then I realized it was strapless. Silly me. Then we had this big laugh session about how I could find a magnetic brooch and stick it on my port for decoration. Har har har....
Sunday, November 03, 2002 at 08:57 PM (CST)
Ah, a night to sing compline. I do so enjoy it. I would love to say I can sing for the Epiphany concert, but it's on a week 3 of meds, so who can say. Besides which, we still don't know what's gonna happen to my hair, eek would I be a public spectacle? Everything these days is done on an "if I feel like it" basis. Kinda gets old to say that.
Today Zoe said to me, "Mommy, don't argue with me, I'm only 3 years old." So soon I forget.
Ingrid is becoming quite the adamant little person. Ear piercing shrieks accompany any refusal or removal of a prized object (be that a wad of kleenex or a crayon). She seems to have reverted back to nursing days and really prefers mommy in the middle of the night. I pray she reverts back to daddy mode next week. However, it is so sweet to rock her back to sleep at 2 or 4 or whenever it is and see her fine features relax in my arms. Today as we shopped at Sams I marveled at how endearing the sight of a baby with it's chubby thumb in it's mouth is. She is our only thumb sucker and I have to say I love it. Remind me of that if she ever needs orthodontia.
Theresa is such a big sister now. I have to remind myself she is 5, not 10 or 15. She does help out so much more now. We are reading all of the "Little House" series and are on "On the Banks of Plum Creek" at the moment. It's fun to see her act out in her play what we have read. Even though she exasperates us at times, I am so thankful we decided to home educate our children. I see the frenetic pace of so many families these days and realize we are in the minority.
Thank you Vernon for the loan of the CD. I am enjoying it as I type. Thank you Vicki for arranging the benefit on Nov 15, I am looking forward to it. Of course thanks to all of the friends and family who are pitching in here and there. It really does make a big difference to us.
Saturday, November 02, 2002 at 09:31 PM (CST)
The past two days have been great, from a health standpoint. If I never look at my chest and stomach and ignore the few medications I have to take, I don't even realize I have had cancer. Of course eventually I do look and yeah the scar and port are still there. I think I am doing pretty darn good.
It's fall and I love fall, everthing about it. The thing I think I like best is the angle of the sun. I wish I could wax more eloquently about it but I just like the way things look in autumn light.
Chris and I took the girls to the zoo for the first time since I had surgery. Zoe kept saying to me, "Remember before you had colon cancer and we went to the zoo?" It was great. Except for a hundred or so FFA conventioneers we had the zoo to ourselves. For the first time since their arrival, we could go right up to the glass and see the gorillas up close with no one pushing us out of the way. Frank (the patriarch) was in rare form and eventually kicked the glass at some teens who were teasing him. Helen (the matriarch) was looking rather depressed. The girls were so cute and had a good time. It was nice to just do something normal.
I am praying this normal streak lasts all week.
Tuesday, October 29, 2002 at 07:07 PM (CST)
Today was a good day. Yesterday was not. It's wierd and unpredictable. Sunday was not very good either. The middle back pain returned with a vengence-hard to stand up straight. Maybe my body was gearing up for chemotherapy. Mom came by yesterday and it really was a big help.
I finally got me a new sweatsuit so everyone who comes to my home won't be sick of seeing me in my old Dallas Cowboys shirt and blue pants (I DETEST football, it's just a sweatshirt I really like).
Alot of folks have asked who took our recent pictures. Her name is Linda Klosterman. She does a fantastic job and is so quick! I loved how she captured our girls' personalities on film. Anyone wanting some wonderful pictures from a genuinely nice person, please patronize her business. Email me and I will send you her contact information. One of these days I'll scan in another and add it to the page.
SARAH HAIR WATCH UPDATE:
Still there and most people would not realize it's thinner. I got fed up and had it trimmed today. Thanks Kelly! (by the way--a great hairdresser--Kelly at Olena J and Company). I really wonder if it's going to all go away. Fine with me if it stays.
Kathy says she is bringing dessert and Kristi dinner tomorrow--wow you guys are great. Thanks so much.
Sunday, October 27, 2002 at 11:58 AM (CST)
What a beautiful sunny Sunday afternoon. No chemotherapy tomorrow, yay. I think I am ready for this 2 week break. This past week has been hard on my physically. I am so glad my mother in law, Joan was here for the week. It was so nice to have someone there to occupy the kids, pick up Ingrid a million times and generally make my job as mom easier.
It's so hard to answer the vague, but well meaning question of "How are you?" Overall I am pretty good. In detail, it is somewhat like being early pregnant. Low grade nausea is constant along with a feeling of hunger (funny the two are together). However, most things do not taste normal. Kind of like having a cold in reverse-I can smell food but it doesn't have much or a normal taste. I still enjoy cooking and Chris says it is so nice to smell food cooking even though we truly appreciate the meals and things people bring. My skin is "on edge" lately. It's hard to describe but it's hypersensitive sort of like when you have a sunburn. The sensitivity is especially strong in the middle of my back. I keep hoping it's because those positive lymph nodes which are located in that region are dying dying dying (said in my best wicked witch of the west sneer). Another thing that seems to come on in the latter part of the week is the feeling of being near fainting. Each time we stood at church today, the room became all sparkly and I grabbed the chair in front to steady myself until my blood pressure caught up.
So, how am I doing? Overall good, with some very particular oddities going on.
Wednesday, October 23, 2002 at 07:28 PM (CDT)
Tired.....of fussy kids. All three girls got their first flu shots yesterday and Ingrid got a couple extra things. She is screaming alot and also probably teething, big sigh.
Want to know how I feel on day 3 after receiving CPT-11? You should put in CPT-11 or Camptosar in your browser and read about the primary side effect. I am tired of trying to delicately describe it to everyone. That part of CPT-11 not fun and I am glad to be off for a couple of weeks.
My hair feels thinner to me, but most people can't tell. Perhaps I wont lose it all.
Tuesday, October 22, 2002 at 07:31 PM (CDT)
I forgot to mention yesterday, Theresa accompanied me to chemo yesterday. The nurses let her in the pharmacy and admixture area to see them make my meds. They were so good about answering her questions and I think she feels better about what I am going through. She also entertained and chatted with several of the other patients. I think, though, her personal highlight of the day was using my box of crayons (with all the tips, Mommy!) and my special coloring books.
I awoke to my bright pink cheeks again today. They say it's due to the decadron I get. Makes me look like I don't know how to put on makeup. Luckily it fades pretty fast.
It's so nice to have Joan here helping out. The girls are loving it. Ingrid is not so sure she understands having her in the same bedroom but she is gradually taking it in.
Chris' sister, Joanie, has been bird dogging our gazillion medical bill statements and dealing with Blue Cross and the various providers to make sure we get as much covered as we are due. What a blessing. Additionally, a friend from our local Birth Care Network is organizing a benefit concert to be held November 15. I continue to be amazed and humbled by the love and support we are shown.
God has been so present to us.
Monday, October 21, 2002 at 08:56 PM (CDT)
Last chemotherapy day in this cycle today. Now I get two weeks off. I asked the nurse to give me half a litre of fluid in my IV after the meds and I think it has helped with symptoms. I got my weekly dose of "tired" but am not nearly so achy.
Chris' mom, Joan is here for the week. We are so happy about that. Nice to have someone living in who knows the kids and is such good help.
My health overall has been good. However Ingrid just finished treatment for and ear infection and on the last day developed all over hives. I guess penicillin is her allergy. Theresa woke with her familiar barking, strangling coughing fits last night. I pray this new ped will order us an asthma rescue inhaler to try. It is very scary to witness. Zoe is fine and her latest comment to those about her hair is, "WELL, I wouldn't look like much of a pixie if I had long hair, would I?" Funny girl. Call Broadway, I see a career.
Perhaps more tomorrow when I am less tired.
Thursday, October 17, 2002 at 06:42 PM (CDT)
South Central Bell has blessed us once again with our nearly bimonthly repair of phone lines. It seems that squirrels chew the lines, leaving them vulnerable to water. Also, there was a wasp nest in the box for our home. The repair guy came and sort of shook his head and said how it would be "real expensive" to make a more permenant repair, without noting how many times per year we have to have them out to fix this. Only expensive for them....it's their line problem. Sigh, our dependence on technology.
This has been a pretty good week. I am looking forward to finishing this cycle on Monday and having 2 weeks off from chemotherapy. Overall the experience has been far better than I imagined. I just recently realized I began chemo at exactly 4 weeks post op. Gee, no wonder I still felt bad when I began. Normal recovery time for major surgery is considered to be about 6 weeks. Here I was rationing out my pain meds. It just dawned on me that I am finally not sore from surgery to my abdomen or chest.
The need for physical help has been much less lately also. I have felt better and been able to stand upright which makes everything easier. My patience level and sensitivity to sound is not very great but I guess you don't get everything at once. Heck, what am I saying, I wasn't that patient before this whole saga began.
To anyone who has been here to help lately, another big THANK YOU!!! I really do mean it. Many of you are concerned you are not doing "enough" or should do "something" but honestly you truly are. It is so nice to know when I have someone coming who will help track down Ingrid (who is crawling and pulling up on EVERYthing), play with Zoe or Theresa or help Theresa with her lessons. Most of all it is nice to have another adult to talk with when Chris is busy with an "away" job. No, I don't mind adding you to the lunch preparations, especially if you are pacifying Ingie while I do it. I don't often need to nap in the day (nor do I get much chance with girls with strong voices) but it is so helpful when I know I can just sit for a bit or not have to haul the laundry basket up the stairs. Please know, it is rarely the big things lately....it's the small things that really matter.
Wednesday, October 16, 2002 at 03:29 PM (CDT)
Just a quick note today. Our phone service has been out for 3 days! Major frustration. I am at Mom and Dad's to type this. If you are wondering where we are, we're home, phoneless.
Sunday, October 13, 2002 at 07:11 PM (CDT)
I discovered something interesting today. Chris and the girls and I were outside enjoying the lovely clear sunny fall afternoon. I was on my back on the driveway absorbing as much heat as I could from the sun like some sort of reptile. As I lay there flat on my back I realized that I was missing a feeling I have had for years. I no longer felt a pulling pain I have had for at least 5 years on my mid right side. One of those lovely "hind sight is 20/20" moments as I realized that was probably the tumor I felt growing steadily. How odd it is that I can finally lay down flat and not have that pain. I never thought it was something important.
Chemo #3 tomorrow. Theresa thinks she would like to go with me. We'll see how she feels about it at 730 tomorrow morning.
Oh, I know, the picture doesn't load yet. I have sent it to the parent server of this site. I have given up for now. Other more important things to do like painting Ingrid's room and getting it ready for Joan, Chris' mom to visit.
Saturday, October 12, 2002 at 07:10 PM (CDT)
Some people have asked about the reference to Kansas. I made this analogy a while back when I first found out about the cancer diagnosis. When you live where we do and decide to drive to Colorado for a vacation, you have essentially one way to go quickly. That is to take I-70 which takes you across the longest path through Kansas. You may love it or hate it but the fact is that you must go through all of Kansas and a goodly portion of east Colorado before you see those beautiful mountains. It's like chemotherapy....you gotta go through it. So for now I am going through Kansas because I must in order to enjoy the mountains on the other side.
Theresa is BIG into cats these days, especially ragdoll cats. She has become fascinated with the subject. Because of her near constant discussion thereof, several of our friends have give her pictures of their kitties. Now she has quite a collection going. It seems to give her something else to focus on. Thanks to all who have sent pictures. I am sure she would appreciate more. If you want to snail mail them, let me know and I'll send our address.
Other than feeling a bit like I have the flu most days I'm pretty good this week. Mom and I baked 12 loaves of bread today, yum. I thought it was time I made good on my promise to bring something in to the oncology staff on Monday.
Friday, October 11, 2002 at 09:12 AM (CDT)
I am valiantly trying to get a better picture to load onto the photo albumn here. Please be patient. A combination of lower dpi and smaller size should allow a clearer picture. I finally was able to see my first effort myself. I have to reload the page every time I view. Nothing like a little technology challenge to stimulate the brain.
Theresa asks me every few hours when my hair is going to fall out. They tell me it will. So far it is still there and I am very careful with it. Perhaps with no hair I'll look more like I fit in in the "chemo lounge" ha ha.
I am now beginning to reap the effects of 5FU. My sense of taste is off. Orange juice tastes salty, vitamin C tastes salty, milk is just plain wierd and worst of all......popcorn tastes funny. Now that IS a tragedy! My hands (mostly the palms) are also somewhat more sensitive than normal.
I went to get a refill on my phenergan yesterday and for kicks I asked what oral Kytril costs. (Kytril is one of the IV premedications I get before my CPT-11). The pharmacist said about $53.00 per pill (once daily dosing). Whoooeee...that gives me nausea just thinking of it. Let us all pray that any nausea I experience is very low grade.
Our helpers from BCN this week (Angie and Joan) were great. The kids LOVED the chicken pot pie, muffins and potato soup. Thank you so much for being there. Milly, Lisa and Melissa, thanks for being available for bedtime hours. It takes a big weight off my mind knowing I can call if we need help.
Wednesday, October 09, 2002 at 01:47 PM (CDT)
So far this week is much better than last due most of all to the marked decrease in midback pain. While I was at my visit, Dr. Grimaldi said, "Take your pain medication!" and made sure I had enough and where to call for more. So wierd to be on the other side of a picture. I am all for good pain control, so why have I been so stingy with myself?
I have mentioned this to many privately but I figure I might as well mention it here. Lately it seems almost "en vogue" to wax on about breast cancer. Although I would never wish for it, there are times I think it would be much easier to discuss what is going on with me if I had that form of cancer than colon cancer. It's just not something the girls will sit and discuss on Oprah, I don't think. Somehow I can't see a deep discussion of citrucel versus metamucil at 4pm on channel 11..... It's kind of strange to be in my oncologist's office with all my hair (so far) and looking pretty darn healthy and have all these older folks around me. The very few younger women I see all seem to have breast cancer or leukemia. Given the slow growth rate of colon tumors, I figure there are many young folks out there with it who just don't know it, like me. Heck, mine was probably there for 5-6 years.
The girls are appreciating the fact that I am not acting so sick this week. Theresa's schooling is going well. She is ahead of where the curriculum has us, but she is so eager to learn I see no reason to hold her back. We are reading Laura Ingalls Wilder's book, Farmer Boy and she is very interested in it. It's fun to see her go outside and play "Laura and Mary" or "Almanzo". Zoe is an imp as usual and driving us nuts. Ingrid is under treatment for her first ear infection, ugh. Snot city.
So much for now.
Monday, October 07, 2002 at 04:00 PM (CDT)
Chemotherapy #2. As uneventful as #1. I was very late getting started (appt for 830, meds begun at 1130). However I did get to have a delightful conversation with Dr. G all about theology, home education, rememberances of his first days in this country. What an interesting man. For me, this part of the treatment is as important as the medications. Mark was my nurse today and my Mom sat with me during the treatment. I think she was quite pleasantly surprised to see how well it went. There were quite a few "bed" patients there today (they get the longer infusions like Taxol) and very few of us in the lazy boys. No one but Mom to talk to so that was good. We enjoyed some soup from Panera while I waited for the CPT-11 infused.
The chemo-low is descending upon me but I have new hope of combating the pain. Dr G told me to take as much pain and nausea med as I feel I need. Hoooray. Why did I need that reassurance? I am such an advocate for pain relief in my clients and patients but it's hard with yourself. A new lesson every day.
I am glad my friend Christy brought food tonight and that Ingrid's godmother will be here to help with bed routine. I am getting tired now.
Sunday, October 06, 2002 at 09:15 PM (CDT)
Tonight I went and sang compline at St Philip Chapel. I haven’t done that in such a long time. It felt good to do something "normal" for a change. I miss singing. There's something very healing about it. It never fails that if I go there, I leave feeling refreshed and a bit lighter. Anyone wishing a lovely, gentle way to say good night to God might want to go there any Sunday night at 830pm. The group, evenSong, sings the service and you may just sit in quiet contemplation. No, this isn’t an advertisement, but if you go and enjoy it, I do hope you’ll consider asking a friend in the future.
Many of you have asked how our children are doing. Theresa is such a lovely and verbal child. She is artistic and without suggestion, she naturally does her own "art therapy". If I can get the scanner to cooperate, I will load up a few of her drawings from time to time. She talks about the cancer and appreciates the books that Kim, the social worker from the oncologist’s office sent home. Zoe, on the other hand is much different. She is a little pixie. She’s also quite practical—so much so that she took matters into her own hands last week and cut her own hair in a style similar to mine (with the exception of the bangs sheared to the scalp, yikes). She has had a hard time lately with going to bed which is unusual for her. I have begun a new routine with her where I go in with her and we talk for a few minutes about what happened that day and I help "give her a dream" for the night. She usually chooses butterflies, merry go rounds, or lollipops and stars. We then say a little prayer and have a few hugs. I try not to orchestrate responses but let her talk in her normal 3 year old stream of consciousness way. Tonight she told me, "Mommy I miss you when you go to the hospital." And when I said my back was hurting (as it does all the time now) she said her usual, "Maybe you should go lay down on the couch for awhile Mommy." I think that’s pretty darn perceptive for a kid.
Tomorrow is my second chemotherapy treatment. I am hoping it goes as well as the last. While I did not enjoy having an aching back and legs last Monday afternoon and night, it was much better than I could have imagined. I would suspect that the tiredness and weakness may become cumulative. To that end, I have already called my weekly Birth Care Network helper angels (and other helpers) and arranged for some help. This is so odd for me to be on the receiving end of help. I marvel, though, at the kindness and generosity shown to my family and me. We are truly blessed to call all of you friends. Thank you, thank you, thank you.
Saturday, October 05, 2002 at 08:49 PM (CDT)
Well I finally got around to creating a web page to keep everyone updated and allow me not to have to rewrite information over and over.
Well here’s the basic history:
As I have told most people, I have not felt well since our third daughter, Ingrid, was born in December. I had abdominal pain, intermittent GI bleeding and significant anemia. However, none of these symptoms alone was big enough or consistent enough for me to seek medical care for quite awhile. I also have no family history and am under 40 so it would not be the first thing someone would think of diagnosing in me. In late July, my primary care doctor ordered a course of iron 3 times daily (my hgb/hct was 9.1 and 27). This acted to exacerbate my GI symptoms. Within a month, my pain was virtually daily and in the week before surgery I was awake all night several nights.
August 30, I was admitted to the hospital for increasing abdominal pain and a large abdominal mass (about grapefruit sized). During the course of my ER admission I had a CT scan (involves drinking a bunch of dye) and in about 3 hours, I was in the preoperative area with what the ER doctor said was appendicitis but what my mom and I (andmy surgeon) thought was definitely not. Just before going to surgery, I felt two pops similar to the feel of one’s bag of waters breaking and intense pain. As it turned out, this was the wall of my cecum splitting, twice. Luckily, I was taken to the operating room right away and over the next few hours Dr. Janet Chipman removed the right side of my colon (hemicolectomy) along with 23 lymph nodes. I thank God she was such a good surgeon and that my cecum did not rupture it’s contents into my abdominal cavity.
I woke up in the wee hours of the morning August 31 in the intensive care unit. The nurses were not very forthcoming with information and I was in too much pain to press for details. I knew I had to turn, cough, deep breathe so I did. The nurses kept acting amazed as I would roll myself over but heck, I knew I would not do myself any favors avoiding those things.
Later that morning, Chris told me about my diagnosis of colon cancer. I was strangely relieved and not shocked. I had worried for months that I did not feel right and that my symptoms sounded like cancer but I hoped it was normal nurse paranoia. As it turned out I was totally correct in my assessment. At least now I knew what to do to get rid of it. My recovery in the hospital was quick and I went home 5 days later.
Since then, I have completed staging tests and begun chemotherapy. Initially it was thought that I was a simple stage 3 colon cancer patient, however the PET scan done postoperatively showed I had a couple of remaining positive lymph nodes in a surgically inaccessible area. Therefore, my primary oncologist, Dr. Manuel Grimaldi, has ordered the Saltz regimen of chemotherapy. This is an aggressive regimen which involves 3 medications, 5FU, Leucovorin and CPT-11 (sounds like something you put on your lawn doesn’t it?) given once weekly for 4 weeks and off for 2wks. Then the cycle is repeated 3 more times for a total of 6 months of therapy. He expects we will also do a course of very focused radiation after the chemotherapy to completely wipe out the remaining lymph nodes.
I had a BardPort (implanted IV) placed just under the skin in my chest September 26. I now look like a Borg, but it sure is handy for blood draws and administration of medications. My very good-looking veins were already looking and feeling bad from the hospitalization and I had not even begun the cancer drugs.
September 30, I had my first chemotherapy treatment. My, my, better living through pharmacology! They give 4 different premedications to control the worse of the side effects. I was pleasantly surprised to find out how much better I felt, rather than worse. Well....until later that afternoon. Then I mostly felt like I had the flu without a fever or nausea. My back and legs ached mostly. The rest of the week I was mostly tired. We shall see what next week brings.
Saturday, October 05, 2002 at 07:34 PM (CDT)
This page has just been created. Please check back for additional updates.