Journal entry by Corrine O'Day Hanan

I have decided I need a daily reminder.  The reminder would be something like this:  "Self, you are not going to have all the answers you want today; deal with it!"

Today was my weekly clinical visit at Charlton 9.  I generally, and today was no exception, have weekly labs drawn, meet with the pharmacist to go over my medications and check for necessary refills, meet with the nurse coordinator, who essentially screens me to let the doctor know how I am, and then I see Dr. Shah.  What was the outcome?  Basically what it's been for a few weeks now:  we're going to keep watching the counts and keep monitoring.  We still don't know why the eosinophils are high, so we'll keep monitoring; I do have mild GVHD of the skin, which is staying under control with the steroid cream; my albumin level is still low, for three weeks now, and we don't know why, so we'll do a 24-hour urine and keep monitoring it; I'm still low-positive for the CMV virus, but we don't need to begin treatment yet, so we'll keep watching that; I am having generalized edema, particularly in my face--so much so that I look like a frog in the morning--, and we don't know why, so we'll just keep monitoring get the idea.  No answers, nothing critical popping out at Dr. Shah, so we'll just keep trying to figure out what all this means.

I'm a "go" for the second round of shots on Thursday.  We're hoping to get me admitted a little more quickly this week.  Everyone has had a week of the routine, so it should go faster, plus there's one doctor appointment I had to do last week that I don't have to do this week.  I am going into this week's shots with the mindset that the shots won't hurt as much this week.  :)  The POWER of positive thinking cannot be underestimated.  However, I'm a smart woman, and I will have my pain prescription filled BEFORE I start screaming.  Hahahahaha.  The study's MAIN coordinator, from out of state, was here today checking Mayo's site coordinator's work to make sure everything is going smoothly, and he received two thumbs up.

Oh, but one really exciting outcome today was that, if my platelets continue to trend upward (YES, you read that correctly, "UPWARD," meaning that my platelets trended up this week, woo hoo!), I get to have my central line removed on Wednesday before I go home Thursday!!  The most exciting thing about getting my central line out, other than the obvious fact it will be nice not to have a double-lumen (meaning two separate lines) sticking out of my chest, is that I will be able to take a bath again!!  AND, I won't have to waterproof my chest in order to take a shower.  Talk about celebrating the small victories!  This one is great.  I'm really looking forward to having a "normal" body (I use that term very loosely, mind you) again.  With the central line in, I feel like I'm tied to a sick person persona.  Now that my hair is coming in again, and now that my central line is coming out, I think I will feel closer to well.  It's another barrier, or limitation, removed, one step closer to overall health.

The weather in Rochester is mind-boggling right now.  It was actually raining today.  As in, the snow is melting and I could hear the pitter patter of raindrops on the roof (because we're on the third floor).  It awakened me during the night, and at first I thought I was dreaming.  Then, when I headed to clinic for labs earlier, the ground was crunchy from ICE because it had been raining.  Just 3 hours south of us there is a major winter storm crashing through.

My plan is to be home on the 24th.  All indicators point to that being a successful plan.  The reason I want to be home on the 24th is (1) so Rick can head to Memphis, where the soon-to-be first-time grandpa is going to the gender reveal party (yippee, Grandpa!), and (2) so I can take Kyan to the mother-son event at his school on the 25th.  So, yesterday, I'm on the phone with Kyan and I ask him if he wants to go, and he nonchalantly says, "hmm, I'll think about it!"  Little turkey.  The school counselor says lots of boys at this age (he's 11) are already pulling away from their mamas.  I'm assuming he'll want to go.  It's not a dance, it's laser tag and other games.  I only get to be home two weeks before I have to leave again, so it'd be fun to spend some quality time together.

Sis Tina is coming with me next time, and right now the plan is to make an arc from Tulsa to Rochester to Norfolk and then back to Tulsa. I'm really excited to go see my brother and his family, ESPECIALLY all the nieces and nephews I haven't even met yet, PLUS my beloved Shary lives out that way now and I'm going to get to spend some time with her.  Just couldn't get any better.  I haven't been able to fly, really, for a while now because my platelets have been so low.  Now that they're up above 50k, I get to fly.  (Although, to be fully honest, Dr. Shah he thinks I would be okay flying with them lower, it's just more of a risk issue if they are below 50k.)

After April, I only have to go to Mayo every three months.  And after I am reduced to quarterly visits, Scott and I are going to start meeting all these new grandbabies who have been born since I got sick!  THREE to be exact.  And I get to be more consistent with CR, which I am really looking forward to.  The joy of anticipation, knowing life just keeps getting better, makes me SMILE.

I didn't do Bible study today, and it feels odd that I didn't.  Basically, I woke up right before I needed to leave for the clinic, was gone most of the day, and then we went out to eat dinner.  Got back from dinner, and I'm doing my journaling, and I'm ready for bed!  However, God never is far from my mind.  I'm really getting clarity on the Bible verses which tell us to pray unceasingly.  Prayers aren't just about asking for things; I think they mean including God in all things.  Praising Him for the good, trusting Him with the challenges, recognizing His love for me in all earthly things, and constantly being aware of how to keep Him on my radar.

I hope everyone had time for God today.  I remember when my daughter, Kristy, was going through a particularly hard time, she said, "I go to church a lot.  Bad things happen when I don't go to church."  Even in her confused state, she knew she would feel safe and close to God if she sat in church.  Bless her heart.  She's been on my mind a lot lately.  I don't have her contact information in my phone, no idea why, but I'm having to wait until she reaches out again.  If you have a Kristy-like person in your life, I pray your Kristy finds her way back to God.  If you feel disconnected with God, I pray you reach out and reconnect.  Have a wonderful evening.  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

I posted this on FB first because I didn't think I had much to say.  After I finished, I decided to post it here.  I have an interesting fun fact to share:  in the 1st month of the year, on my 11th day of journaling, I reached 1,111 visitors to the blog.  Fun, right?

For whatever reason, and I'm sure there is one, I've been very tired lately. This morning, I got up, celebrated another good blood sugar (woo hoo!), ate a healthy breakfast, did my "service to others" in the form of kitchen duties, came back upstairs, and then took a nap from noon to 3:30. Heavens to Betsy (and where did that expression come from?), how lazy is that?

I am excited to report that my leg has nearly recovered, I'm screaming significantly less often, and am, overall, ready for phase II. Tomorrow I have my "regular' clinic day, in that I get my weekly labs, see the pharmacist, the nurse coordinator, and, of course, Dr. Shah. On Thursday, I will have my second clinical trial injections and spend the night in the hospital again. After I get out on Friday, I have to stay until the following Thursday, when I get to go home for two weeks and come back for another week. Scott and I intend to get some sight-seeing done, that we didn't get done before, during this next week after I get out of the hospital on Friday.

Tonight I had a really sweet conversation with my daughter, Clarissa. She is doing a marriage and family project for a class at school. She had all these questions about her mom's labor and delivery of her (homework assignment). One of the questions was what was going on the world around us when she was born, and I was like, "you're kidding, right? YOU were born and that's all I remember from that time frame!" I was pretty serious, too, as she was my first grandbaby and I was over the moon excited when she was born (You have to understand that, when she was first born, we still held hope that her bio-mom would be able to step up and be a mom, so I was "just the grandma" in the beginning, even though she lived with me.) Anyhoo, so I'm laughing about how I can't remember anything else going on in the world, and she says, imitating "older people" talking, "that's what's wrong with the youth today. They think the whole world revolves around them. It's your fault, mom," she says. That just made me laugh more.

One of my new friends is a woman who had a transplant here at Mayo about a year before me. Sometimes she's here at the same time as I am, and today was one of those days. I had a particularly good time visiting with her and her SO this afternoon. As terrific of a support system as I am blessed to have, there's something really nice about knowing someone who is going through the same thing as I am (down to type of transplant and similar underlying diseases). Only she's been at it a whole year longer than I, so she's got more knowledge under her belt and is really, really kind to share with me. To say she's lucky to be alive is a tremendous understatement. She fell and hit her head on some stairs when she had NO platelets to speak of, and nearly died in the process. You know who you are, woman, and it was TERRIFIC to see you today!

Of course, I live at a transplant house when I'm in Rochester, which is very nice. But they're not all stem cells, and very few of the stem cells are allo (donated from others, instead of auto, which is their own). We get hearts and kidneys and livers as well. What I've noticed the most, by far, is multiple myeloma, which has no cure but an auto stem cell transplant is life-extending. Being in a close environment like Gift of Life, as I am, it feels (to me) sometimes like everyone on the planet is sick! And about half of them with multiple myeloma. For those of you reading, it's a growing problem for the 60+ population, so be aware. :) Get yourself just as educated about multiple myeloma as you are about skin cancer or lung cancer or breast cancer, so you at least know the warning signs. Many people are misdiagnosed at first, so it's worth knowing the symptoms if you are 60+.

So, if you've lasted this far, have a great night and thanks for being on this journey with me. We have the best God who puts the best people in our lives for us, and I'm living proof. I'm very blessed for every single one of you, truly I am. In just under two weeks, I will celebrate my six-month mark, and things continue to improve every day.

And I'm still asking for prayers for my friend, Leslie, who is recovering from her recent surgery to remove one kidney and both adrenal glands as preliminary treatment for stage 4 renal cell carcinoma. She's been a big prayer warrior for me, and I've been praying for her every day since we learned she had cancer. Any of my prayer warriors who could add her to their prayers--please do!

Love and hugs to all.

Comments Hide comments

Journal entry by Corrine O'Day Hanan

Yesterday I wrote about "trusting the process."  Today I am celebrating God's glorious healing power and reveling in the love of God.

My leg still hurts, but it is SO much better than yesterday, and I give God ALL the glory.  I trusted His process instead of MY instincts (mine being, don't walk on it).  I remember writing about imagining a conversation with God about what would happen if, instead of asking God, "what should I do?" I just asked Him to show me what I need.  Giving Him my leg instead of doing it my way was my first experience of trusting God's lead.  And it worked out so well!!

I find myself wanting another situation where I did this again.  Then I muse, hmm, not sure I want another pain experience, though...hahahahaha!  Notice the irony there . . . I am welcoming another experience, but already setting parameters.  Lord, forgive me.  Speaking of which, have you ever heard King and Country's "God, forgive us"?  Such an amazing song.

I am fighting fatigue lately.  More than the usual fatigue I'm still trying to adjust to.  I know fatigue -- excessive daytime sleepiness -- can be attributed to depression.  I don't think I'm depressed, though.  I think the suppressed counts, combined with recovering from a bone marrow transplant, combined with fighting off inflammation and whatever else, is just requiring extra rest for my body!  I'll go with that until God tells me differently.  :)

I got ready to write the date down tonight, and I had this reaction:  "WHAT?!  It's ONLY the 12th?  I've been writing ONLY for 11 days?"  Oh, my goodness.  I have to laugh and laugh about this.  A year from now, when I'm celebrating an entire year of keeping my goal, I will remember my first shocker, of feeling like I've been writing and writing and writing, and it's only been 11 days!

Well, we just had to say "bye bye" to the Dallas Cowboys' season.  It was a good game, but the Rams prevailed and will be playing in the conference championship next week.

So, as DAY 11 of my writing commitment comes to an end, I pray everyone has a God moment, or even several of them, every day.  I wonder if God ever sits up in Heaven, smiles and says, "I love when a plan comes together" or if He's so used to everything working out the way He wants that He just smiles a lot.  Have a blessed evening, and I hope those of you, who want to go to church tomorrow, get to go!  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

Yesterday I went inpatient for "Day 0" of the human clinical trial I am participating in.  Essentially I will be receiving two sets of shots, one week apart, 18 shots each time, of embryonic stem cells (from placenta, not embryos) in an effort to boost my stalled counts.  It was a very hectic day.  I was assigned a one-on-one nurse, and essentially she had so much to do that she was in my room the entire day until after the shots were given.  Her name is Spring, and she was terrific at her job!

I had nine shots in my right hip (cheek) and nine shots in my left outer thigh.  Next week I will have nine shots in my left hip and nine shots in my right outer thigh.  The possible side effects included "pain at the injection site."  HA!  I told the clinical trial coordinator they needed to change it from "possible" side effect to "will produce pain at the injection site."  What surprised me is that the shots in the hip didn't hurt as much going in, and have produced much less pain at the injection site.  The shots in the thigh were painful, and after-pain has been a tad stout.  Whew.  If you've ever felt the pain of a muscle as it tears, or like a pulled hamstring, you'll know exactly what I mean where I say that every time I move the leg where it involves flexing the thigh muscles in any way, it's a burning, searing pain.  Walking on it is tough.

What I learned pretty quickly, though, is that if I don't walk on it at all, or if I sit without moving it at all, that first flex after a period of non-movement is the very toughest.  It feels like I'm slicing my muscles as I put pressure on the left leg.  After the area "wakes up," the pain recedes.  So far, it's not ever pain-free, but that tenth step is infinitely more manageable than those first 2-3.  It's a constant reminder to trust the process, because it never feels like I can do it, that this will be the time I do permanent damage, yadee yada.  But I have to take a deep breath and remind myself to trust the process.  IF I walk, it WILL ease up.

These last two days have been a great reminder of how important it is to trust God with our process.  He knows what He's doing.  It's also a reminder that life is not pain-free, but it does get better over time.  We all expect that about the time my left leg quits hurting so much, it will be time to do the right leg!  And the bright side of that is that one, I know what to expect and how to speed the healing time, and two, both legs shouldn't be hurting at the same intensity at the same time!

I love how our lives are intertwined with God's and how our physical life mirrors our spiritual lessons.  God never works on one level, and it seems to add meaning to the journey when I am able to connect the dots.  My son, Aaron, who is in prison for drug abuse (essentially) right now, is developing his way with God, and I've been extremely grateful for his spiritual growth.  It's another area I give God the glory, because I tend to think if I hadn't been walking this walk for a while, I wouldn't be as able to add to my son's walk as I have been.  The good news is that, if I hadn't gotten it together, God would have put someone else into my son's path.  I'm just happy that I can be part of his walk.

I pray that this evening finds everyone trusting the process, in whatever way they can, and from wherever on their path they are.  God is the best tour guide!  In Jesus' name, AMEN.

Comments Hide comments

Journal entry by Corrine O'Day Hanan

It is a little confusing to myself that I made a writing goal that included different spots to write.  So I must remember that yesterday I journaled in a different spot.

Today the clinical trial coordinator called to confirm we were still a go for tomorrow's first set of injections.  He was waiting on one more signature to make it "totally official," but he has received the stem cells from the company.  In case anyone is curious, or wants to check out the possibility of getting into the clinical trial for self or others, it's a Pluristem clinical trial.  If you google "incomplete hematopoietic recovery clinical trial," you could find it right away.

I had already laid down for the night when I remembered I hadn't journaled today!  Yikes.  Don't want to mess up my goal this early in the year.  It was a good day.  Tomorrow will be busy and starts at 7:00 a.m.  I will meet the clinical trial coordinator at 7:00 for labs.  Then I go to the EKG center and get my EKG done.  Then we'll go upstairs to Charlton 9 and meet another doctor, and then my doctor will do a pre-injection physical.  The goal is to get my pre-injection histamine shots, and then my injections about 1:00 p.m.  I'll be in the hospital for 24 hours after the shots, so I can be closely monitored.  I'll have another set of labs before I'm discharged.  The "team" is excited because I'm the first patient at Mayo to fill one of its three slots, but also because it happened "so soon."  Everyone on the team thought it would take longer to find patients who met the criteria.  I'm taking my laptop with me and plan to binge-watch shows to get caught up, but the way the clinical trial coordinator talked, I will be interrupted a lot.  Plus apparently I get my "own" nurse!  Can you imagine one nurse for one patient?  She won't know what to do with herself.

I'm praying for a good night's sleep tonight.  I have mixed feelings about the clinical trial.  I'm happy to give back to the body of medical knowledge which has brought me this far, but I am unsure how much benefit I will derive from participating.  And, if I'm honest, I genuinely thought my counts would be up enough by now that I wouldn't qualify any longer.  The nice thing about where I am in my walk with God is that I trust His timing.  So He must believe my participation is important, or He would have removed me from consideration.

Well, I'm going to keep it short tonight, since I'm really ready for bed!  I would appreciate more prayers for my friend, Leslie.  Her kidney/adrenal gland surgery took 4.5 hours and she is in a lot of pain, for which, apparently, she is not receiving narcotics because of the opioid crisis?  Good grief, that's plain crazy.

I pray tonight finds those in my world at peace in theirs.  In Jesus' name, AMEN.

Comments Hide comments

Journal entry by Corrine O'Day Hanan

The clinical trial coordinator (Jordan) called today, to update me on the latest regarding my inclusion in the clinical trial.  He had received the rest of my test results back and had posted them into the database, and was sending a note to the main headquarters to make sure the shots could be shipped on time.  Right now the plan is for a Wednesday admission, so Tuesday's lasagna dinner is looking promising!  I'm still not an "official" participant, though!  However, I have completely checked out in all the areas I need to qualify in, so at this point it's a formality.  Kinda weird, though, to be the FIRST participant at Mayo to be included!

I won't do regular labs for Dr. Shah until Wednesday this week, so it will be a couple more days until I find out if my counts have done anything productive this last week.  Hahahaha.  It's so crazy how these little cells my bone marrow makes are soooo important!!  Sometimes it feels like my body is walking along, dosie doe, all here and there, while I'm saying, hey look, I need some more platelets and stuff!  I'm rather hoping to get answers on these rising eosinophils while I'm here this time, too.

Today I had a really good Bible study.  I read the devotionals from Jesus Calling and the CR devotional.  The first verse I highlighted was Psalms 146:1-2:  "Praise the Lord.  Praise the Lord, O my soul.  I will praise the Lord all my life, I will sing praise to my God as long as I live."  

Tonight was the college championship game between Alabama and Clemson.  It was a hard-earned victory for Clemson, which rolled over Alabama 44-16.  The thing about this game was that both teams were undefeated this year, both coming into the National Championship with 14-0 records.  That meant that we all knew, ahead of time, that one team was going to be the very first 15-0 team.  When the TV sportscasters were interviewing Clemson coach Dabo Swinney, he was praising God.  I thought that was really cool.  I always thought God didn't really get involved in sporting events, because everybody wants to win, and Christians all pray to God that their team wins.  Then I was thinking, I can see where God would get involved if it served some greater good.  I'm going to be watching Clemson in the next year and see what flourishes.

I'm trying to think of something different to do tomorrow, my last day "off" before the clinical trial begins.  I have to stay in the hospital for 24 hours after the injections, which I'm tentatively scheduled to receive between noon and one on Wednesday.  Thank goodness for this laptop my brother George got me last summer.  I will be binge-watching something for sure!!  AFTER Bible study, of course.  Tee hee.

It's very late for me (after 11), so I'm going to call it a night with journaling.  I was really tempted to skip tonight, but I wanted to keep my goals, and I certainly don't want to lapse on the 7th day of the year!  I'll leave tonight with my other verse of the day I wrote down.  1 Thess. 5:18 - "Give thanks in all circumstances, for this is God's will for you in Christ Jesus."  I am so thankful to God, seriously, so thankful to Him for all he has brought into my life these last few years.  I want to stay ALL IN with Him, and I want to share His love with all.  I pray that everyone discovers that "God moment" where it begins to click, where having God in their lives makes sense or, alternatively, that life without God makes no sense at all.  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

One of the themes that presented itself to me today was from today's Jesus Calling passage and the Bible verses I read.  Mostly the theme was "how to pray"!!  I think it's very exciting this was the theme today, because in recent days I have journaled about how I've been asking God to keep me focused.  Then, this morning, I went to Jesus' words in Matthew 6:5-13 which were basically instructions on How to Pray!  I love it when things work out like this. 

Another passage from John 16:23 caught my attention as well, and I wrote that one down:  "And in that day you will ask Me nothing.  Most assuredly, I say to you, whatever you ask the Father in My name He will give."  Jesus was explaining that, up until that point (it was right before he was crucified), Jesus took the prayers of the disciples and presented them to God.  Jesus prayed on His disciples' behalf.  Jesus explained that, after he went back to His father, people were going to be able to pray directly to God, but it would have to be in IN HIS NAME. 

The next thing I would like to figure out is understanding how God answers prayers.  I know it is all in His timing.  I know that a "no" sometimes doesn't mean "no" forever, or that if it's a permanent "no," then God has something better in mind.  I know God uses our circumstances in many, many ways.  My illness, happening at the time it has, has God's touch all over it!  I'm unable to comprehend what this last year would have looked like without my heart where it's been, as far as God and Jesus go.

I've been fairly tired these last few days.  The drive up here tires me, and I was a tad run down after being home with the kids and trying to keep up.  Today my brain kind of kicked into gear on that topic, and I thought, hmm, my body is telling me it's a little run down, so just rest.  Other than a quick trip to the store for tonight's dinner ingredients (we had fajitas, yum yum), I've been quiet all day.  We're on the third floor this time.  I was at the elevator, waiting on it to come, and I briefly contemplated taking the stairs.  Then I said, Self, you can do stairs tomorrow.  Today we are resting the body! So far, I don't feel guilty about it.  :)

Tomorrow I should be hearing from Jordan, the coordinator for the human clinical trial I'm being evaluated for.  He was actually supposed to call me Thursday or Friday, but didn't.  I should find out (1) if I've been accepted, and (2) whether I'm going inpatient Tuesday or Wednesday.  The next phase of the GEMM journey is about to get underway!  I will admit, though, I'm kind of hoping I don't get accepted, because it's a one-year commitment to the study.  Luckily, I leave the decisions to God, so I'm just going with His flow.  Maybe I could mention there's a lasagna dinner Tuesday night at GOL house, just sayin', going inpatient Wednesday has its rewards . . . the group which brought the lasagna last time did a great job, and I'm thinking Tuesday's dinner is the same group.

I hope this evening finds people in a place to hear God's voice, and feel his reassuring love.  Life is so much better when God's in charge!  I remember how, all my life essentially, I've heard about people praying for peace on earth.  And the beauty pageant jokes?  What do you wish for?  Peace on earth.  If we found peace within each person, there would be peace on earth.  Tonight I pray for personal peace for everyone.  In Jesus' name, AMEN. 

Comments Hide comments

Journal entry by Corrine O'Day Hanan

What a blissfully quiet day.  I slept in again -- which means I slept until I woke up, instead of having to arise at a specific time -- and got to start my day at an easy pace.  I love-love-love my children, but there is no such thing as an easy pace when it comes to starting my days with them.  :)  I ate a good breakfast, had a great Bible study time, and didn't do anything strenuous today (no cleaning or laundry).  Scott and I went to the Clint Eastwood movie, The Mule, and it was good.  Slower and less action-packed than I was expecting, but I enjoyed it.  We went to the early show, came back to the GOL house and had a light supper.  

I was reading in Colossians today.  One thing Col. 3:2 teaches is to "set your mind on things above, not on things on the earth."  That had special significance to me today, as I've been journaling the last few days about how frustrated I've been with my physical limitations.  If I were obeying God's word, I would focus my attention on things above, not on the earthly stuff.  In Romans 8:22 Paul teaches us that our time on earth is like childbirth into heaven, “We know that the whole creation has been groaning as in the pains of childbirth right up to the present time.”  Our time here on earth is so short compared to our existence in the hereafter with God.  If I read the Romans passage correctly, our time on earth is not pain-free and can be as tough as childbirth at times.  (I know I've heard for years God does not promise a pain-free life.) While we are here, we are to do everything in Jesus' name, "giving thanks to God the Father through Him."  All day I've been realizing that I would not have time to lament my current circumstance if I was more obedient to the word.  I suppose I'm taking the next step beyond my commitment to undertake this journey with no murmuring or complaining -- by more mindfully incorporating acknowledgement of what lies ahead for me after I leave this world.

I guess the important lesson of the day is that I learned another lesson, and I feel at peace tonight. I feel invigorated to, mindfully, take tomorrow as it comes, with full awareness of knowing God guides my path, down to my every breath.  I remember reading in more than one place in the New Testament about how the disciples and other people who were going to speak God's word were told they would know exactly what to say when the time came.  They didn't have to figure out ahead of time what they would need to say to people who would inevitably challenge them.  They just had to put one foot in front of the other, going where God sent them, knowing He would provide even the words they needed exactly when they needed them. I love those stories.  I hope everyone reading gets to experience those God moments as well!  In Jesus' name, AMEN.  

Comments Hide comments

Journal entry by Corrine O'Day Hanan

Tonight I am going to write about perspective.  How each of us views the world has significant impact!  The reason this topic came to mind was because, yesterday, I spent three hours at the Mayo Clinic.  I'm a people-watcher and enjoy watching people walk by, some alone, some in small groups, parents with children, husbands with wives.  It's interesting to take it all in.

The very first time I came to Mayo, one of the things I noticed was how much HOPE was in the air.  Obviously sick people were walking the long halls, but I could see purpose in their walking.  I could see the hope in their eyes.  Many people come here after being somewhere else, where that "somewhere else" couldn't help them.  Mayo has a reputation of finding the tough answers, of coming up with innovative solutions.  Its research capabilities are among the best in the world.  I could see the commitment in the patients.

So, fast-forward to yesterday, and I am at the Mayo for that three hours to get a 15-minute dressing change.  Lots of time for people-watching!  The emotion that jumped out at me was FATIGUE.  People seemed to be walking slower, there seemed to be less energy emanating from them, and so many looked as if they were ready just to call it a day.  After I noticed that I was picking up on more "sadness" than, say, "happiness" or "hope," I wondered why.

In my own personal journey, I have been experiencing illness fatigue.  Being at home is so much harder than I had anticipated.  Taking care of myself is getting a little tedious!  I want just to jump in and carry on my normal routine without it draining me of energy.  I'm constantly having to redirect myself (for example, one day I completely forgot to take my morning medicine, yikes) and constantly having to remind myself that I have to be just as conscientious at home as I was at the Mayo.  I'd much rather focus on the fun stuff and the kids.  :)  So many times I'd mindlessly push down trash with my bare hands (instead of putting on gloves or having one of the kids do it), or stick my hand down the garbage disposal to make sure nothing was blocking the blades, or pick up something without even considering whether I needed to put gloves on.  It got to the point I just put hand sanitizer in every single room so I could spritz quickly if I didn't have gloves or wasn't close to hot, soapy water.

So, as I was people-watching yesterday, and as I was perceiving more "negative energy" than "positive energy," it caused me to reflect on why that might be.  I'm a big believer in that we notice  what are feeling.  When God gave me that extra time to wait for the shuttle, I took some time to ponder my perceptions.  I realized that I was zoning in on people I perceived were feeling what I was.  I have not lost hope in my situation (not at all!) but I recognized that I needed to process this sense of endlessness as it relates to my treatment.  I suppose I'm beyond ready for this part to be over.

I'm at a spot where it's all wait and see, at least from what I understand so far.  My counts have stalled, but they have not failed, so it's just a matter of time before I either fully recover or need additional treatment.  In the interim, I have to continue to observe my restrictions faithfully.  I need to think before I act.  I need to be mindful of my limitations.  I need to maintain the level of health I've achieved without endangering myself.  These are all healing elements I agreed to before I started this journey.  I realized I needed to change my perspective from grieving what I can't do yet (which I also realized I was doing to some degree) and celebrate all the things I can do and the fact I'm alive to do it!

James 4:13 says we should say, "if the Lord wills, we shall live and do this or that."  To me, it makes life so much simpler.  I trust God.  I have faith.  If He wants me to do something, He'll find a way to let me know.  This kinds of builds on what I was saying yesterday, that if I turn my will over to God every day, He will let me know what He has in mind.  I would never have to ask, "so, what should I do?"

I didn't get out and about today, but I imagine that if I did, I would have noticed different things in my people-watching today. I felt less restricted about managing my illness today.  I slept until I was ready to get up, cooked myself a healthy breakfast, took my meds, and then got to start my day with my Bible and a CR devotional.  It was about noon by the time I got all that done!  Then I got to take a good nap.  I cooked a good dinner, and got to listen to Christian music while I cooked.  I didn't rush anything, I let myself keep the pace I needed not to overdo it.  It was a good day.  It was also a reminder of what I need to do at home.  I'm still trying to pack my "normal" household life into a day which doesn't last as long as the "illness-based" household life.  I need not to forget this when I go home again!

I'm grateful to serve God, and I'm blessed He takes such good care of me.  Let Him show you how much better life can be the more you let Him in.  It's totally worth it!  And, if you go to CR, keep going back!  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

Today was a blissfully quiet day.  I had only one appointment at the clinic, to get my dressing change over my Hickman line.  Between calling for the shuttle, waiting for the shuttle, taking the shuttle to the clinic, waiting to get my dressing changed, getting my dressing changed, going back down to wait for the shuttle, and then taking the shuttle back to the transplant house, the outing took three hours!!  How quickly I forgot how time-consuming all this can be.  After I got back, I went shopping for our food and laundry supplies.  Now it's almost 8:00 at night and I'm ready for bed.

Today I jotted down two possible topics of writing.  One involves my autistic (Asperger's) son.  He is almost 15 now, and very bright.  He has an interesting way of leading into a conversation from which he desires "answers."  He will say, "so, what should I do?" I will then have to pry the questions out of him, but we eventually get to the bottom of it.  I translated that process into God-communication.  If I asked God, "so, what should I do?" I'm not convinced God would ask, "about what?"  I'm pretty convinced God would tell me what to do, about whatever it is that I think I need to know.  As in, God is so thorough and all-knowing that He knows what is the something I need to do something about.  Wouldn't it be great if we had that skill as a parent?  Seriously, though, I've been thinking about it in the context of God-communication all day.  In CR we talk about turning our lives over to God once, but we turn our wills over to Him daily.  How much could I improve my faith if I not only went to God for things about which I know I have a specific request, but also asked God to show me what I need?  Otherwise, am I not still keeping some of my will instead of turning it over to God?

Today I spent my Bible study in Hebrews, which dedicates quite a bit of its time to FAITH.  My favorite verse which leapt out at me was Heb. 11:3: "By faith we understand that the worlds were framed by the word (emphasis mine) of God, so that the things which are seen were not made of things which are visible."  God didn't just transform one thing into another, He created them with his word.

Right now, in my current life, illness and coping with illness are a major part of my days.  I don't think I worry and fret about things, but I know I still struggle with timing, and always waiting on the next thing.  Today's 3-hour trek for a 15-minute dressing change was a classic reminder of how important it is for me to be patient, to trust God's timing.  For example, when I finished at the clinic, I was getting off the elevator right as the shuttle was driving away.  There was absolutely no way to catch it, so I was resigned to waiting for the next one, which takes at least 30 minutes.  However, I sat down and thanked God for the extra time He obviously decided I needed.  I used the time just to relax and contemplate.

The other topic I jotted down was about perspective, and I've decided it will be tomorrow's topic.  I have a lot to say about that!  (You have to imagine Forrest Gump's voice saying, "that's all I've got to say about that" in order to understand why I'm giggling right now.)

Every day I am humbled by God's presence in my life, and today was no exception.  It felt so good to be able to have time to read the Bible this morning and do a CR devotional.  It makes my day GREAT!  I pray all my loved ones are feeling God's love this evening.  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

I am beginning my blog with the recognition that I am about to trade a zero percent chance of living for a 15-20% chance.  Added to that is my knowledge that 15-20% might just mean for a few years.  Because my faith in God is strong, I suppose I believe I only need a one percent chance to go for it. 

I had never heard of myelodysplastic syndrome, a form of cancer, before I was diagnosed with it in March of 2018.  It's a bone marrow cancer.  And my particular form of MDS is related to the treatment I received for Hodgkin's Disease in the 1990s, when I was given a regimen of MOPP/ABVD chemotherapy and then radiation, to cure the cancer.  Now I am preparing for a bone marrow transplant at the Mayo Clinic in Rochester, MN.  A transplant is the only cure for my disease, so there is no question in my mind this is what I'm going to do.  I keep telling myself that God wouldn't have given me four beautiful grandbabies to raise if He didn't intend for me to raise them.  I believe God is going to perform miracles in my life.  I believe my journey and my healing are going to glorify God in every way, and I'm excited to see how He works things out.  Right now I am telling myself that I am awake at 5:00 in the morning not because I am anxious but because there is so much I have to do in the next week to get ready to leave that I just can't sleep.  Realistically, I'm sure it's a combination of both.  Scott and I leave in eight days.  I've been waiting on this trip to come, essentially since my diagnosis in March, but now that I have an actual date I must leave, it feels like there is not enough time to get ready.  I've been keeping a list for a while.  Don't forget this or that.  Be sure to do this or that.  I have this overwhelming need to get things "in order."  How does one prepare to be away from home, from her children, for months?  I try not to get into the cycle of feeling trapped because there is truly no other choice, so what am I feeling? 

I just want the kiddos to be okay while I'm gone.  Not just my babies, but my adult children as well.  I feel sad for them that I will be gone for a while.  I vacillate between wanting to spend every second with them before I go and wanting to keep everything as normal as possible for them.  Then again, our lives changed in March of this year.  We have a new normal.  We're all going to be okay.  Different, but okay.  And I'm at peace with that.

Comments Hide comments

Corrine’s Story

Site created on June 9, 2018

I'm a grateful believer in Christ who is traveling a journey of high-risk myelodysplastic syndrome (cancer) with complex karyotype and p53 mutations, with treatment to include a bone marrow transplant.  I choose to travel with God, trusting Him and His plans for my life.  I choose to face this illness with faith, perseverance, and joy; I choose not to murmur or complain.  I choose life! Thank you for visiting.