Journal

Journal entry by Corrine O'Day Hanan

Today the last of my blood tests came in.  The most exciting result is the chimerism test.  This is the one which measures how many donor cells are present in my blood.  The last test I had, done at Day 28, showed I was at 100% donor and 0% me (very good result).  I'm happy to report this test, done at Day 60, also showed I am still at 100% donor and 0% me!  Praise God.  I only found out in this past week that the chimerism can change, and a drop in the donor % is a sign of relapse.  

I still have some CMV (virus) titer in my blood, so I must continue the two-a-day IV meds for at least 3 more weeks.  However, when I do finish the CMV treatment, I would be just 3 weeks from coming home!  Yay!  My graft-vs-host disease rash has completely resolved.  My skin has some odd=looking pigmentation changes which will probably not go away, but it's so nice not to be scratching all the time.  (And I am thoroughly enjoying being able to brush my teeth again!)

I do have a few blood results which are out of normal range, but I see the doctor tomorrow and will find out their significance.  I don't think anything is worrisome, but I also like to know what the tests mean.  I like to know everything, bahahahaha!  I don't think I'm driving anyone crazy just yet, so I'm doing pretty good.  What I DO know, though, is that my CBC is showing tremendous improvement overall.  My hemoglobin is at 9.6 (normal being 12-14), my platelets are at almost 100,000 (normal being 150,000 to 400,000), and my white count is up to almost 3.0 (normal being 4 to 10).  I'm a little behind schedule on all these things, but the trend is definitely upward now (before it was up and down, and then it flatlined for a while).  The good part about these numbers is that I seem to be tolerating the IV meds for the CMV--these meds often suppress the CBC numbers.  So, another area where I give God the glory.

My mom got out of the hospital, for which I am very grateful to God.  I'm thankful for all the people who prayed for her after she had her heart attack.  She is tired, sore (they did a double bypass), and doesn't want to eat much, but HOME she is!  I made her promise to get lots of rest and take it one day at a time.  We'll see if she keeps her word.  Tee hee.

I continue to have abdominal pain, which gets pretty severe at times.  Last night when I prayed, I asked God for a reprieve of sorts.  This morning when I got up, my stomach wasn't hurting.  It didn't start hurting for about two hours, actually.  What made me think of this topic is because my stomach is really hurting!  So I'll put it in my prayers again, thank you God.

The weather in Rochester is quickly turning cool.  I have enjoyed watching the leaves float away from the trees in various colors.  Recently I learned that trees cut off the water supply to the leaves in the fall, after which the leaves fall off.  God just thought of everything! 

Today I ordered some long john underwear.  I'm already wearing 5 layers of clothes--Scott says, "woman, you go through a week's worth of clothing in a day!"  Have I mentioned recently that he does the laundry?  And my immunosuppression guidelines include not wearing the same clothes or pajamas twice? :)  Anyway, I'm perpetually cold, so I've been wearing two pair of pants and five layers of shirts.  When I come to clinic for my IV meds, the nurses ask if I would like a heated blanket.  I always say YES because it feels so good to be toasty warm!

One side effect of the transplant is that I don't like a lot of salt any more.  This is a good thing, given my heart condition.  To those of who don't know this about me, when I was younger I would put a pile of salt on my plate (just like one would do with ketchup) and dip my food into the salt!  When I was pregnant with my first child, my husband was always hiding the salt from me.  Now, the average food seems too salty.  I've started buying low-sodium stuff!  And another side effect is that I don't care much for sweet stuff anymore.  I don't eat chocolate bars, I don't eat many sweet desserts (like cake or pie), and I don't think I've put a cookie in my mouth since the transplant.  I do, however, still like Poppycock popcorn treats (kind of like a grownup Cracker Jack).  I just don't like the pieces that have too much caramel on them, like the pieces which contain nuts.

I've spent quite a bit of time in praise and worship of God these past few days.  Putting my Christian music on, praying quite a bit.  I am so grateful to God that things are going so well with my post-transplant course.  From Day 60 until Day 100, it's mostly maintenance.  Keeping track of what the blood work is doing, but also continuing strict adherence to the immunosuppression guidelines.  And I have gone from being a person who had a hard time remembering to take meds to being a person who rarely forgets them.  It has been ingrained into my brain how necessary these drugs are:  the immunosuppressants are one, but I also take a host of anti-viral, anti-bacterial, antibiotic pills.  These meds are acting as my immune system until mine is up and running properly again (which takes about a year).  Today I ordered some new masks, because I will need them for up to a year.  I got the kind where I can wash them and insert new filters in them.  Life moves forward, a day at a time.  And I have definitely mastered the lesson:  one day at a time.  Well, maybe not mastered, but at least a very good grasp of the concept!!

A couple of days ago Scott and I had an entire day where it seemed we spent most of the time waiting.  Waiting on the shuttle an extra long time (first time it came through it was full).  Sitting in the doctor's office waiting on the provider to come in (took a really long time).  There was something else, too, but I can't remember what it was.  We decided God must have really wanted the two of us to have some one-on-one time just to chat.  Or He was working on our commitment to be patient!!

Now that the 60-day mark is past, I'm about six weeks away from going home.  I can't wait to get there and hug and kiss all my children, and see my family and friends!  God continues to clear the path for me.  I am grateful to Him.  In Jesus' name, AMEN!!



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Journal entry by Corrine O'Day Hanan

I almost didn't start a journal entry today, because tomorrow is a much more newsworthy day.  But I have some time to say a few words, so here I am.

Tomorrow is Day 60.  Just like Day 50 was exciting for being at the halfway point, Day 60 has significance as well.  First, I have a bunch of tests to make sure I'm still on track.  Second, if I'm still doing well, that means about SIX more weeks until I prepare to go home!  I'm just giddy with excitement.  It feels so close.  :)

I got to Skype with the kids today.  It was good to hear them talk and and laugh and interrupt each other--Rick finally split them up and gave them turns--just like old times.  Maggie got in trouble at school and was reluctant to talk about that, but opened up when Rick said the matter had been dealt with and I told her, "let's move on to the next thing."  Her hair looked so cute!  Kristan had straightened it and styled it for school pictures.  I'm definitely hitting her up for hair lessons when I get home.

It was a pretty day in Rochester today.  Cool this morning, but 70s this afternoon.  I think it's supposed to go down in the 30s tonight!

Today I finally saw the GI doctor because of my persistent abdominal pain.  He thinks it's one of two things:  (1) abdominal wall pain, or (2) functional dyspepsia, which is some kind of nerve issue between the stomach and the brain.  So first he's going to give me medicine (because, as we all know, I don't take very much at all!) for the nerve pain; if it doesn't work, I can have injections.  It's frustrating, but I figure it will work out.  They have ruled out all the nefarious possibilities, so everything else is okay with me.  I mainly just want to know what it is.  I have said all along it feels like the pain does not come from within my stomach, that it feels like the pain presses against my stomach from the outside.  If it turns out to be an abdominal wall issue, it will turn out I was saying what it was the whole time!

I love technology (most of the time, anyway).  Tonight I am typing on my journal, and my browser has Christian music playing on a different tab.  I'm old enough to remember software that wasn't sophisticated enough to do that.  :)  I mourned the loss of DOS for a long time.  Hahahahahaha.

The last several days (probably since a post from a couple of weeks ago, where I talked about not doing enough for God, feeling like I was taking, taking, taking, but not giving enough), I have been particularly mindful of the world around me.  Specifically, the people around me.  I'm surrounded by so many people who are going through the exact same thing as me (I'm staying in a transplant house, so every single person is either a transplant patient or a caregiver to the transplant patient), and I see many different levels of dealing with it.  Lots of people have strong faith and believe in Him for the best possible outcome.  Many don't seem to have that, and I grieve in my own way about that.  One, I feel sad that they reject the warmth and safety of God's love and protection.  Two, I realize I would be in their shoes if I hadn't walked through the doors of Celebrate Recovery five and a half years ago.

I remember when I started my first 12-step and first found out I would give a testimony at some point after I completed my step study, I almost dropped out of the class.  The idea of getting up in front of people and "telling my story" was mind-boggling.  But I stayed with it and by the end I was clamoring to get up and tell my story.  I wanted to shout my praises of God from the mountain tops.  When I watch people around me, or interact with them, I want to share my experience of God with them.  I have this overwhelming desire to share God with EVERYBODY I meet.

I have conflicting feelings about how my treatment is going.  One feeling is that it's going too easy, that God hasn't challenged me enough, and how can I prove my dedication to God if I'm not suffering through this?  The other feeling is gratefulness to God that He's clearing my path.  Literally every single hurdle has been cleared for me.  

I can't even begin to figure out where the journey began, but it wasn't with the diagnosis in March.  At the very least it began last fall, when my health care coverage was discontinued in the county where I lived, requiring me to obtain new coverage by Dec. 31st.  At first I was overwhelmed, but then I dived in to make sure I didn't lapse in coverage.  Long story short, because I was canceled, I was eligible for a supplemental policy, so I ended up with insurance that whatever (A) doesn't pay, (B) pays the rest, leaving me with no expense other than the deductible.  Literally two weeks into my new coverage is when my symptoms started.

Then my trip to the Mayo was arranged.  Then the diagnosis, how quickly they found out what was wrong.  Coming home, getting chemo.  Getting into full molecular remission with two cycles.  Getting approved for transplant.  Having family at home take over so Scott could come with me, because I wouldn't be accepted without a full-time caregiver with me 24/7.

Then transplant went well.  Post-transplant has been fairly smooth, only a couple of speed bumps.  Coming up to 60 days ALIVE and PRAISING GOD.  Tomorrow I will get my chimerism blood test, which will take about a week to come back.  I am already at 100% donor cells, but I just found out it can go down, which is an early sign of relapse.  That is why they check at 30, 60, and 100 days.

Anyway, God has literally let me live one of my favorite Bible passages from Proverbs 3:5-6:  "Trust in the Lord with all your might and lean not on your own understanding; in all your ways submit to Him and He will make your paths straight."  A bone marrow transplant has a different path for each patient; the basic direction is the same, but so many things are tailored to each patient it's impossible to create a "one size fits all" treatment.  So, without God, my path would have been (as my doctor describes it) a narrow path around the side of a mountain.  He has cleared a wide path for me thus far, and I am grateful.  

Let God guide your path.  He's the best one to do it!  In Jesus' name, AMEN!!

Journal entry by Corrine O'Day Hanan

This evening I am at the clinic, getting my IV evening meds.  It is storming in the area tonight.  There's even a tornado warning.  Bad weather always used to make me nervous.  Yet now, what I think is about how Jesus was sleeping through a storm and his disciples didn't understand they were safe because he protected them.  So, yes, it's storming outside and there's a tornado nearby, but God is right here with me.

Today I finished everything for my transition (STEP DOWN) to Charlton 9, except my appointment with Dr. Shah, which is tomorrow.  Then, starting next week I will only have to see medical people twice a week.  I will still need to do the twice-daily IVs for 3-4 more weeks, and I will still need daily lab work, so I'm not totally free, but stepping down is a great thing!  It means I don't require daily medical attention.

I spent some time talking to my kiddos last night.  It was blissful.  I love hearing their voices and how excited they get telling me about the simple things.  Maggie loves third grade, she loves her teacher.  It reminds me of how much she has loved school since preschool.  After her first day, and realizing she got to go back the next day, she said, "I can't wait to go learn some more."  It was so cute.  And she didn't want to be taken out of school for appointments and such because it would take away from her "learning."  She still has that spark.  She's a great reader.  Last year the teacher's aide told me Maggie would sneak a book onto her lap under her desk to finish reading something she wasn't ready to put up yet.  

Rick picked Kyan up early from school one day this week because he had a doctor appointment.  Kyan was mad at Rick because, by being picked up early, Kyan missed second recess.  Isn't it fun how the little things can really trip kids up, and they soothe so easily?  Ky first told Rick, "I'm mad at you," and then a little while later, he was having fun and talking with Rick, and then smiled and said, "I'm still mad at you" with that little twinkle in his eye that he has.

I had to stop working on this journal entry the other day, and have no idea what I was going to say next, so I'm going to post this and work on today's!

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Journal entry by Corrine O'Day Hanan

My days have been very long lately!  Sometimes I want to remind the clinical staff I am not a teeny bopper any longer, hahahaha!  I have clinic in the morning at 7:30 a.m., which lasts 2-3 hours.  Then I have clinic at night, which lasts at least 2-3 hours.  However, many times it's 10:00 p.m. before I get home, and I have to be up and ready to leave for clinic by 7:00 a.m.  

So I have been working on time management for the hours in between and, probably more important, diabetes management.  Still trying to get my glucose under control.  It's much better, but still not where it should be.  I'm grateful for the lack of the sugars in the 400s and 500s.  Now I'm hovering between 150 and 250.

There's this really neat reading nook up on the 3rd floor of the transplant house. I found it early on, but have never utilized it.  Today I curled up in one of the chairs and read today's "Jesus Calling" devotional.  Then I read a few devotionals from another book.  The peace and quiet was very soothing.  Gift of Life has several inspirational books in this particular reading nook, so I plan to visit again soon.

I get frustrated with myself for not journaling more.  Every day I discover something new and special, and I want to journal so I can look back and remember these things.  Often I am just so tired from the clinic routine that I sleep in between appointments and then am too tired when I get done that I just want to go to sleep!  I have to be in a certain place spiritually to be able to journal effectively, i.e., so I don't just babble.

I also brought in more of my sewing stuff today.  I'm finally feeling well enough I think I can begin my sewing projects.  I know I just said I'm tired all the time, but I have breaks in between that are getting longer and I think I'm ready.  Remember how back in the day our moms would tell us we couldn't go play unless our homework and/or chores were done?  In my life now, I feel it's important to have my "God time" before I play.  :)  

I am coming up on 2 weeks of the IV anti-viral therapy.  As of Friday, my titer levels were still increasing.  We're waiting on today's level (they check twice a week right now) to see if it's still going up.  If it is, they are going to increase my dosage and I will likely need another week or two of treatment.  Which I don't mind, as I continue to keep my pledge to God not to murmur or complain, but if I have to continue coming twice a week for two more weeks, it will likely continue to interfere with my journaling capacity!  Thank goodness God knows my heart, right?

I have been praising God because my graft-vs-host rash has completely resolved!  Woo hoo!  I still itch all over like CRAZY, but it's due to very dry skin.  I just keep on putting the lotion on.  :)

I think the most important lessons for me right now are patience and gratitude.  The doctors are having to balance a lot of different things right now, and yet I am navigating the course of treatment very well.  For example, the IV meds I'm on have some pretty nasty side effects that could be bothering me; they are not.  The IV meds have an immunosuppressive effect; so far, my counts are holding up.  CMV starts (for me, reactivated) in the blood stream, and then it can "settle" somewhere, like the lungs or liver, or any other organ.  Things get a little more dicey when the CMV settles.  However, mine does not appear to have spread from the blood stream.  With my complicated medical history, God is the only explanation for my not being "worse off."  And I experience my gratitude daily.  Patience is where I need additional work.  I HATE WAITING!  So right now I have to exhibit patience when I'm waiting for test results.  LOL  I had blood drawn for an updated CMV, but it will be tomorrow before I see the results.  So tomorrow I will know if I'm going to be at this one more week, or two more weeks, etc.  It would have been NICE to know TODAY, but every time I start to obsess over the results, I remind myself to be patient and God is in control.  It wouldn't be much of a learning experience if I was already good at patience, right?  So God is good, giving me ALL THIS PRACTICE!!

Rick has been at our house five days now, but the kids are doing well, and Rick is holding up just fine.  Me?  I'm happy that things are going well.  Ky has a doctor appointment tomorrow, and I'm not spending today trying to make ride arrangements.  Ky had a football game Saturday, and Rick took him, and I got pictures and updates throughout the game, and that was awesome!  Kyan definitely seems to be learning the game, and I'm happy he is doing well and having fun.

It feels like I could write for two more hours and not get everything written down that is on my mind, but I feel my brain slowing down as I get tired.  So I will close for now, full of gratitude for God and all my friends and family who take time from their days to pray for me.  PRAYERS WORK!  I'm living proof.  I pray for all my friends and family daily.  Take care, and turn it over to God.  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

This week I have been diagnosed with CMV, a virus that is carried by 94% of the American population and which is a non-threat to the majority of the American population.  CMV is, however, a rough virus for the immunocompromised.  The treatment for this necessitates me to present to clinic twice a day for IV meds.

So, last night Scott and I showed up to the clinic for our second IV of the day.  And we watched college football on TV!  We passed our time essentially oblivious to the fact we were cooped up in a hospital room.  It was great.  (P.S. - the game was Clemson vs. Texas A&M)

This morning we got up early because we had to be back at the clinic by 7:30, and I was pondering how important it is to be appreciative of all the little things.  It goes back to my belief that perspective is crucial.  I could have bemoaned the fact that for the next three weeks I'm going to be stuck in a hospital room tied to IVs twice a day.  Instead we found a way to have fun and our little date night.

Yesterday I was literally giddy all day long that Jeanne and Rick were taking Kyan to his football game and that Ky was going to have family in the stands cheering him on!  It just made my heart so full of joy.  Alec was participating in a band event out of town, and I was grinning thinking of him out there being part of a group.

Next Saturday (the 15th) marks the halfway point of my treatment:  50 days!  I'm excited to mark the halfway point.  Not just because I'm alive but because I'm getting better, and because every day I'm one day closer to going home and hugging kids.

So, anyway.  In the midst of my mindfulness to be grateful, and celebrating the little things, I was blessed with a huge blessing.  Rick, of the godparents Jeanne and Rick, has offered to come live in our house until we come home.  Rick is retired and Jeanne still works, and Jeanne is willing to live without him during the week.  :)  There are so many benefits to this.  Mary and Paul, who have been staying at our house Sunday night through Friday morning, are wearing themselves out.  They both work and are working all day, then running errands in the evening, then picking the kids up from Anthony and Kristan's, getting everyone home and in bed, only to start over again the next day.  Anthony and Kristan have the kids every day when they get off the bus.  We've had constant stress with Ky's football and practice rides.  Rick is retired and he can handle all this stuff, plus it will mean there's an adult home with a car if there's a problem somewhere.  Anyway, I keep digressing from my point, which is that I believe that by being mindful and faithful to God and acknowledging His hand in every thing, no matter how small, and being mindfully grateful, there are the bigger blessings which appear!    Paul teaches us in Romans 5:1-5:  "Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God.  And not only that, but we also glory to tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.  Now hope does not disappoint, because the love of God has been poured out and in our hearts by the Holy Spirit who was given to us."

I close this evening with a heartfelt prayer that everyone gets the chance to have a moment of mindful gratitude for the little things, because the little things count.  God's blessings are all around us.  I pray everyone find their blessings.  In Jesus' name, AMEN!!

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Journal entry by Corrine O'Day Hanan

Today has been a long day and I have so much on my mind--so much so that I don't even know where to start.  So I think I'll just do a chronological run-down.

My mom is in the hospital after having a heart attack which had her in the O.R. for a double by-pass during the wee hours of the morning (her surgery finished around 4-something a.m.).  She is very, very blessed that she got to the hospital when she did, that the hospital staff reacted so quickly, that she herself had had the sense to take an aspirin, that Lee defied her wishes and took her to the hospital instead of letting her "call the doctor in the morning."  So many ways God protected her!  She sustained zero percent damage to the heart muscle as a result of all the quick thinking and action.  Today she says, "wow. I can breathe!"

My first response upon hearing the news (once I got past the scary part) was frustration, that I was stuck in Minnesota while my mother was having a health crisis.  But after the frustration came the gratitude -- to Lee for getting her to the hospital, to Tina for essentially dropping everything and going to be by her side (and Lee's), to the hospital staff, and to God for keeping her alive so I didn't lose her while I'm in Minnesota.

My son Aaron is also heavy on my mind.  Friday was his birthday, and once again he is in jail on his birthday.  His addictions have him gripped tightly.  He took a plea on a recent charge and has decided to go to prison.  And I'm sad, but not because he's going.  I've very relieved and grateful to God that God saved his life and is providing a way to break the addiction's grip.  I'm relieved he will be in a place which will make it a lot harder to put himself in harm's way.  I'm not naive to the fact that there are a lot of drugs in prison, but there is still hope he can leave that life behind and learn better coping strategies for that which pains him.  I have placed my trust in God as far as my son goes -- no one else but God can handle the mess he's made of his life.  I've talked to Aaron and his mood is good, he is ready to change, he is embracing God's role in his life, and he is committed to change.  As long as he doesn't fight God's way, I know all will be well.  I'm only sad because I hate that it took THIS MUCH damage to get his attention.  And I will miss him.  It will be a while until I can go visit him.

The longer I am here in Minnesota, the more it feels like there is so much LIFE happening around me!  And I'm here, just waiting for my life/health to get stable enough to go home and go ON with my life.  Yet I'm excited, because I keep learning more about myself and because I keep developing my relationship with God, and because I keep finding more positive ways to view situations.  It's something new and wonderful every day.  I'm hoping that because I'm feeling better and starting to need less sleep I will be able to blog more.  There's just something special I learn every day and I want to remember these moments, highlight these moments, create reminders for myself of how God works in my life.

I want to do more.  I want to help more.  I want to be part of spreading knowledge of God.  Right now I feel like I'm just a taker, taker, taker, not enough giving!  I'll be glad when I feel like I'm doing enough for others!  Be happy, all.  You are blessed if you just take time to notice.  AMEN!! 

Journal entry by Corrine O'Day Hanan

A snippet of yesterday is lingering with me this morning.  Which, by the way, is Day 33 post-transplant!  Yesterday was my third day walking to appointments using my walker instead of having a wheelchair escort.  (Yes, I am WAY into celebrating the little things.)  I'm still pretty shaky, and slow, but just keep reminding myself that "slow and steady marks the course."  

So Scott and I are traversing this very long hall, and people keep going around me.  I jokingly said, "it always feels like I'm going pretty fast until people start passing me!"  It is this moment in time that is with me this morning.

I was thinking about how important perspective is.  How important it is to view events in our lives through God's lens.  I could view my situation completely different than it is, if I looked at it without my "God is in charge" lenses.  I am 33 days post-transplant.  I have been in the hospital 10 days of that time.  I have this rash on my body that itches like crazy 24/7.  I can't see.  I have tremors, which get so severe sometimes I can't hold my body still.  My stomach hurts, I can't eat properly, and every time I turn around I need blood or platelets or magnesium.

Yet that's not the way I "see" myself.  I "see" myself in constant proximity to God, who has blessed me with everything I have right now.  Number one, my LIFE!  My odds going into this transplant were not good, surviving the first thirty days, not good.  Yet here I am, alive and happy and joyful to be a child of God.  Yes, I'm walking very slowly, but I'm walking!  On my own two legs!  I have a rash, yes, but I also have this amazing cream to put on it which helps cut down on the itching.  How blessed am I compared to the poor souls who had this years ago, before the cream was invented?  My stomach hurts, yes, but it's working--I am able to take in food which my body needs to replenish itself, and I'm not throwing anything up!  Some people have feeding tubes because their bodies simply can't eat.  I am in a few days of uncertainty, waiting on test results and waiting on figuring out what certain lab results mean.  I HATE waiting!  Yet I am secure in the knowledge that everything is in God's perfect timing, that I am such a blessed child of God He has a plan just for me, and it will be revealed to me when God decides, and I have no reason to be anxious or to gripe because it's taking too long.  (Confession:  I have to remind myself of this several times a day.)

And every day, every single day, I am in awe at the willingness of the people in my life, who love me and who also love God, to be at home putting up with my messy children, my sometimes disrespectful children, my children with their own special needs and uncertainty during this time their parents are away...feeding them and getting them to school and taking care of them when they are sick.  I could cry with gratitude every single day because it's overwhelming!  I have moments when I say to God, I don't know how I could ever repay all this kindness, but the answer always seems to be that there will be opportunities for me to give back.

I think one answer that comes to me as I ponder all this, is that every single person walking the face of this earth has a story, a back drop to their behavior.  Personally, I don't think I will ever look at a person walking slowly or with great difficulty again without wondering if that person is walking with God.  I am blessed to have learned this lesson now, and I never want to let it lapse by the wayside.  I want to celebrate LIFE, in all its speeds and speed bumps.  In Jesus' name, AMEN!  Have a very good day!  

Journal entry by Corrine O'Day Hanan

Today has been a good day.  I still have clinic every day, so we spent about 4+ hours over there.  My magnesium was low again (huge shocker, ha!), so I received 4 hours of IV magnesium.  However, my red counts are hanging on and I didn't need a transfusion today!  They already did the type and cross-match in anticipation of my needing some, and then I didn't.  That was cool.

Today my children have been on my mind a lot.  Kyan had his very first football game and I can't wait to hear how he liked it.  One of the football moms did a Facebook live stream so I was able to watch some of it, but the connection kept buffering out and it wasn't very successful.  We're letting Maggie drop out of cheer because it's just too much for her without my being there.  She was so stressed she had started hiding parts of her uniform so she wouldn't have to go!  I just wanted to pick her up and hug her and tell her it was all going to be okay.

I continue to be so grateful to all the people back home who are working tirelessly to pull this all off.  Anthony and Kristan and Paul and Mary and Rick and Jeanne -- keeping my house together, keeping the kids together, getting them all back in school and sports -- WHEW!!  I am blessed beyond measure.  And friends like Sarah and Kim and sis Tina -- wow.  Coming to the rescue for appointments and rides at the last minute.  

Tomorrow, of course, as I've been crowing about, is Day 30 post-transplant!  I'm ridiculously excited.  The first big milestone is engraftment, but the next big milestone is living through the first 30 days!!  It doesn't really matter how much earthly trouble the world heaps on when God is in charge.  I haven't done enough good in my life to possibly earn the amount of grace and love God is heaping on me, and I will never stop singing his praises -- even on days when I feel terrible!

The doctors are keeping a close eye on me this week.  I have all these things going on that *could be* significant or not at all.  My rash is doing better, but there's still quite a bit there.  My tremors continue, some days worse than others.  I am having continued stomach pain.  They said if it was still hurting like this come Monday I will need to be scoped.  My eyes still aren't cooperating, so I've got an eye consult coming up.  Still have a couple sores in my mouth, so I'm set up to see ENT.  Yet none of it feels unmanageable, or like I just can't stand it another minute. I keep singing the song, I will put my trust in you . . . I love how I've been listening to Christian music long enough that lyrics just come to mind when I am faced with these situations.  It doesn't matter to me what others are doing, in terms of how some people don't have these symptoms or some people have it worse -- I know that whatever I am going through God has a plan.

I am grateful to all the people out there who are loving on me, and praying for me.  You all are part of God's network keeping me grounded here on earth, and I thank you.  In Jesus' name, AMEN!!

Journal entry by Corrine O'Day Hanan

I did not even have to think about naming my entry tonight, as I coined the phrase, "The August Blur" in a recent FB post, and it fits exactly!

The month of August has been challenging, exciting, and exhausting.  I am beginning to understand why it is so hard to tell people ahead of time what to expect after transplant:  it's so individualized and there are so many paths the recovery can take that it's not really possible to prepare anyone fully.

The biggest blur of the month was the week and a half I spent inpatient.  I had started feeling bad by Day 6, which is completely normal and expected and nothing to worry about.  My appetite dropped off, I was struggling with nausea and diarrhea, and I just didn't feel good, period.  In the hospital, they mostly managed my electrolytes and fluids and tried to control my symptoms.  Me?  I just tried to keep track of what day it was.  I was a mental case, couldn't focus, couldn't stay awake, and was completely unreliable as to information I passed on.  Hahahahahaha!  I came through it, though, have been home almost a week, and feel a little stronger each day.  I remember the song I heard in my head the most was "I Will Praise You in this Storm" by Casting Crowns.  Even if I couldn't remember what day it was, or even who I was, I could remember God and stay close to Him.  It was very comforting.

So, we're coming up on my first 30 days post-transplant, which is quite an achievement!  The first 30 are critical, and I have met my milestones pretty much right on time.  My white cells engrafted first. They have been a little flat-lined the last few days, so they're watching the counts closely.  Today, however, the neutrophils finally started back up, so the doctors are relaxing a bit.  Sluggish engraftment has a few causes, so it's important for my doctors to watch carefully and stop whatever is going on that shouldn't be.  It's possible I'm fighting a virus.  It's possible I'm developing graft vs host disease.  It's possible the counts are depressed just because my bone marrow is working hard to get back up to speed. 

I developed this icky rash on my legs.  It's presumptive for graft vs. host disease at this point.  I had skin biopsies this morning, and it will take about a week to get biopsy results back.  If it is GVHD, then the next step will depend on my status, based on blood tests they are doing tomorrow, which is a way to check certain serum levels in my blood.  It's really impressive and complicated, and I'm grateful some genius minds figured it out!

I also had my chimerism blood work drawn, which should be back by Friday.  It will let us know how the donor cells are settling in.  The goal is more donor, less me, such that eventually, by 100 days anyway, 100% of my blood contains my donor's DNA and there's none of mine left.  Sometimes, if the percentages are slow to pick up, patients receive a second infusion of donor cells.  So, it's a big week for finding out how things are going!

The really exciting news for me today, however, was that I've almost cleared all the extra fluid I retained in the last couple of weeks.  Because of imbalances in my electrolytes, the fluid had to be cleared at a slow rate.  So today when I woke up and I could actually basically see my ankles, I knew the news would be good!  And it was.  I'm back down to pre-transplant weight.  Yay.

I got a new music book in the mail while I was in the hospital.  It's from MercyMe's album "Welcome to the New," which contains "Flawless" and "Greater."  I'm happy to be feeling better such that maybe I can start playing again.  Right now it feels like I sleep, wake up for a little bit to eat and get dragged to clinic, where I lay in bed and sleep while I receive my IV fluids of the day, wake up to go home, and get fed sometimes in through there.  I need to video myself walking.  It's hysterical.  I do the 90-year old shuffle--or at least how I perceive I'll be walking at 90.  It takes all this energy to go six steps and then I'm like, whew!  That's enough for now!  I have this cool-looking red walker with the big wheels and the seat I can rest on when I get tired.  I was very resistant to getting it, and now I don't remember why.  It's very helpful to keep me steady.  Plus, they keep telling us transplant patients walking as much as we can is a huge way we can keep our recovery moving along.  So I might only last 20 steps, or six, but I keep on keeping on.  

I have days where I get to the end and I'm so happy it's time to go to bed, but then I wonder if I did enough for God today.  I feel so much like a bubble brain right now I wonder if I thanked Him enough, or if I praised Him enough, if He could tell without a doubt how grateful I am to Him.  I find that even when I'm so sick I can't focus on much of anything, I reach out to Him and feel better.  I just keep praising Him in these storms, and I am grateful for every new day He gives me.  I am already looking at ways this experience has changed me, and one huge way is that I have almost zero need to accomplish any busy work at all.  I want to get home and focus on the important stuff and cleanse my soul of the need to "achieve" anything but peace with God and gratefulness for my life.  And hug and love on my children, whom I miss like crazy but know they are well taken care of and I'm very grateful to the crew at home making that happen.

Bless all of you who read and follow along my journey and send the encouraging messages.  I am committed to documenting this, because I have such a testimony of God to share!  Praise God.  AMEN!!

Journal entry by Corrine O'Day Hanan

I haven't gone this long without journaling since I got here to the Mayo!  It feels like forever since I've had the time to sit down and reflect.  This entire past week, since when I was started on steroids, my blood glucose levels have been really high.  A side effect of the high glucose levels is that my eyes are very blurry and I haven't been able to see well enough to navigate the computer!

Around midnight on July 26th, the day before my transplant, my blood glucose levels shot into the high 500s.  I was at the emergency room for four hours, (1) waiting for the doctor, and (2) receiving insulin.  We didn't get back to the transplant house until about 4:00 a.m.  Then I slept until time to head to the clinic!

On Friday, of course, it was TRANSPLANT DAY!!  What an incredible experience.  It was a very long day, because we had to wait for immunosuppressant level results and so we started later than planned.  First I had to receive four hours of fluids.  The plan is to load the patient up with fluids--hydrate hydrate hydrate--before receiving the stem cells so that the blood product can circulate really well.  Second, the actual stem cell transfusion takes place.  It is, quite literally, anti-climactic.  It's just like receiving a blood transfusion.  It takes roughly an hour.  It requires two nurses.  One nurse is feeding the stem cells via gravity, manually.  No IV pump is used.  The other nurse is taking vital signs every five minutes.  That is not a typographical error.  It was every five minutes.  Any sudden drop or rise in blood pressure of significance is addressed immediately.  I was blessed to experience steady blood pressure the entire time.  I was allowed to eat and drink at will.  The funny thing is, because my blood sugar was so high, I was extraordinarily thirsty even though I was receiving IV fluids.  

Throughout the transplant process, I experienced some chest pressure that was a bit uncomfortable.  It was thought to be because the stem cells were really cold (thawed but cold) and my heart is warm, so the sensation of cold flowing through warm caused pressure.  Makes sense to me.  The other symptom I had was that my legs kept cramping.  Ugh.  Uncomfortable but tolerable.  Didn't really have any symptoms that had me begging for relief.  Hahahahaha.  I felt God right with me the entire time and was secure in my safety with Him.  I've been using childbirth/labor as an example for this.  Even though it was a little bit rough and had some pain associated with it, the end was always in sight and I knew there were good things for me there.  After the transplant, I received four more hours of fluids!  I was blessed in that the fluids went out as fast as they went in, so there was no fluid gain over the transplant!

Scott and I had gathered some of my favorite Bible verses to read throughout the procedure, and of course we prayed beforehand.  I feel very strongly that God is with me every step of the way.  However, I also believe very strongly that I must be mindful in my relationship with Him, I must mindfully include Him in all my moves.  So, during the transplant, keeping Him close was very important to me.  The next day after my transplant I was filled with this slow, deep, abiding peace that I was surely going to live, that God had affirmed that for me in that peace.

Since then, every day I go to the clinic for my daily assessment and vitals and blood work.  Every day, the providers express genuine satisfaction for me that I am doing so well.  I haven't run any fever.  I haven't thrown up at all.  Today was my first "puny" day post-transplant.  I am tired, and have very little stamina, but I'm here, alive and kicking and full of joy for God and for life.  I have been warned, repeatedly, that *this* is about the time things will get a little rough for a few days.  I am okay with that.  I celebrate the fact that I've had 5 good days, and if I end up having a few bad, I praise God with the glory in the trial.  This afternoon the diarrhea has set in, I can't walk five feet without exhaustion, yet I am perfectly content.  My counts are almost bottomed out (a necessary step).  My white count is down to 0.1 and there are so few cells a differential was impossible to perform.  My platelets are down to 104,000.  Interestingly enough, my red count is staying pretty steady.  The doctors have explained that because the red cells can live for four months, they last longer. 

I had a great nap.  I'm back at the hospital because I needed another IV bag of magnesium, which takes two hours.  My sugar is down, my eyesight is better, and this two hours is a perfect time to catch up on my journal!  Life is good.  Praise God.  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.

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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.

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