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Journal entry by Corrine O'Day Hanan

This journal entry has been bouncing around in my head for a couple of weeks.  The month of December was exhilarating and exhausting.  I got home in time to start the month of December at home.  Was home only 10 days before I had to leave again (back to Mayo) for a week.  This last time I was home 17 days...the longest continual period of time I've been at home since May 25th of last year!  I enjoyed the time with my children.  Scott and I left New Year's Day to drive back up to the Mayo for lab work on the 2nd (today), and then further evaluation for the clinical study, plus regular checkups with Dr. Shah.  I will be at the Mayo for approximately 3 weeks (a little longer), go home for two weeks, and then come back for a week.  After that, I get to be home for an entire month before my next visit!

The main thing that is going on is that my counts have stalled.  Essentially, they haven't improved much since November after stalling out in October.  The diagnosis is "incomplete hematopoietic recovery."  Dr. Shah is recommending me, and I am currently getting evaluated, for a human clinical trial in embryonic stem cell injections.  Today my platelets had made it up to 41k (the highest in several weeks), but my hemoglobin had dropped back down into the 10s and my eosinophils continue to climb.  My calcium level also dropped and so did my albumin.  What does all this mean?  Thank goodness I have a Dr. Shah, who knows all things hematology.  :)  Because, clearly, I HAVE NO IDEA!!  I do think that I am fighting gut graft-vs-host disease.  I continue to have stomach pain and eating problems.  I know that eosinophilia is a sign of GVHD.  My December biopsy came back PERFECT--no cancer, no mutations, no genetic abnormalities--so the issues are not likely relapse-related, which is a very good thing.

My biggest issue in my recovery, as far as "me" emotionally, is I'm having a harder time adjusting to life at home after transplant than I anticipated.  I run out of energy so quickly, and my mind is not synchronizing with my body at all.  My mind has things it wants my body to get done, and my body says, sorry pal, no can do.  One day I was baking oatmeal cookies, a task I love (baking in general) and a task for which I now have double ovens!  It took me forever to get the ingredients out, get the batter made, get the cookies laid out on the sheets, and put into the oven.  That's all I got done in the baking department that day, and it was ridiculously frustrating.  Cognitively I "know" all this healing will take time, that God has a plan for me in His perfect timing, that it will do me no good AT ALL to fight against what my body needs on this journey, but it's like explaining calculus to a toddler.  It's as if I am incapable of processing and understanding my limits.  

I didn't expect to get as frustrated with myself as I have been.  It seems illogical that I can't do more yet.  I'm more than five months post-transplant.  Everyone's experience is different.  I have actually read stories about patients who are back to work at five months!  Realistically, though, most patients who have an allogeneic transplant need a year.  People who receive their own cells back (autologous) recovery much more quickly and don't generally develop issues with GVHD.

I was going to journal yesterday, because New Year's and all.  But we were on the road all day long and, by the time we got checked into our hotel for the night, I was too brain-dead to write anything meaningful.  However, I have taken the scary plunge of committing to write something meaningful every single day this year--whether a blog entry, or a private journal entry, or a FB post of some depth--every day I will take the time to write about my day.  (Starting today, January 2nd, that is.)  I sincerely believe I will write a book one day, and I'm going to use this year to set a writer's goal and stick to it.  Last year I committed to writing "more" than the year before.  This year, I'm taking that commitment a step further and am committing to writing daily.  There was a movie a few years back with Meryl Streep and Amy Adams, called Julie and Julia, where Adams' character committed to cooking every single recipe in Julia Child's French Cooking cookbook in a year, and writing about the experience daily.  As I watched that movie, I realized what a big commitment writing every single day is.  And I have read about authors who write for a living, how they have to set writing time aside every single day, just like going to a job.  I guess it's the only way to know if I can follow through.  I've proven I can stick to a goal many times in my life.  However, I've always shied away from setting specific goals as to writing.  

When we were loading the car (we borrowed Mary's car to come up here, thank you Mary!) with all our stuff, my youngest (Maggie) said, "are you sure you're only going to be gone for three weeks?"  The car was packed!  I told her there are certain things I would take whether I was going to be gone 3 days or three weeks.  I have an entire tote full of just medicine.  I have a second tote of medicine that is my backup (medicine I possess but don't currently take but could be put back on).  A backpack with my Christian essentials:  Bible and other reading material.  One large and one small suitcase for clothing.  My camera bag.  A tote with "stuff":  chargers, extra batteries, the rechargeable batteries with charger, extension cord for the room, etc.  Scott has a large and small suitcase.  A shoe suitcase with our winter snow-appropriate boots.  Both our laptops.  Our cpap machines.  I'm so glad we're here.  The drive isn't that bad if we break it up into two days, but it feels good to be here, unpacked, and ready to launch the next phase of this transplant adventure.

I have been asking God to help keep me focused.  That's the main prayer request I've been sending.  I'll be doing my evening prayers, which always start with the Lord's Prayer, and lately I get through the prayer only after 2-3 tries because my brain darts off.  Then I do my gratitudes and prayer requests for others, and finish with my nightly "talk" with God.  Since I've been home I've had difficulty setting aside time for my Bible reading and study.  In the mornings, the kids are always awake before I am (they are on Christmas break), so I awaken to sounds of active, hungry, noisy children.  By the time I get them situated, take my morning blood sugar readings, and then eat my breakfast, my day has hit full speed.  When I get home, and they get back in school, I must get back to reading my Bible in the morning.  For one thing, I absorb knowledge much better in the morning than in the evening.  Most times, by bedtime, my brain has shut down.  For another thing, I am swimming in guilt many days because I haven't given God enough of my time.  So that's part of why I'm asking Him to help me stay focused.

For those of you out there who pray for others, I have a very special friend named Leslie who has been diagnosed with stage 4 renal cell carcinoma.  She is having surgery next week to remove one of her kidneys and both of her adrenal glands.  If you could add her to your prayers, I would appreciate it.  She is loved by many, is fiercely family-oriented, and I hate that she's even sick because she means so much to so many (which I know we could all say about the special people in our lives), but I believe in the power of prayer.  I feel as if I've had the entire country praying for me, and I would love for people to pray for her as well.  In fact, I know she has prayed many times for me.  :)  Her surgery is the 9th.

My gratitudes today include my support system, including hubby Scott; my brother Paul and his wife Mary, who are loaning us a reliable car for this trip; my brother George and his wife Michele, who are paying for my transplant house costs; the children's godparents, Rick and Jeanne, because Rick is taking care of the kids while we're gone; my mom, who continues to heal from her heart attack and bypass surgery; to Mom and Lee for loaning Paul and Mary their small Chevy so Paul and Mary could loan us Mary's car!; and many, many more.  I praise God for every day I am alive, and today I also thank Him for the nice weather we had during our drive up here.  It was COLD, huuu-aahh (imagine the Marine tone), but no snow or ice on the roads, and lots of sunshine. (I'm also happy that the OSU Cowboys won the Liberty Bowl this week, tee hee.)

May each of you feel God's radiant love!  In Jesus' name, Amen!

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Journal entry by Corrine O'Day Hanan

Oh, so wonderful to be home. And what an adventure getting here. First, we left Rochester last Wednesday and then broke down an hour later, stuck at the side of the road in snow and sleet until the tow truck could get there. Second, it took two days to arrange a rental van home, a Herculean task which involved several key people (like Mary and my Mom and my brother George and his wife Michele and even my friend Kim who was willing to drive up there and get us!). Next, we had to unload our van and reload the rental van before we could leave Friday morning. The trip home was fraught with bad driving conditions, daunting road detours and traffic in Kansas City, and then driving rain and tornado weather the closer we got to home. I was probably at the highest level of stress I've been at in MONTHS by the time we got to our house! If you're wondering whether the drive home was more stressful than the bone marrow transplant, I would have to give you an emphatic "YES!" Sigh.Getting to come leave Mayo on the 28th was with the caveat that I return to Mayo on December the 12th (two weeks). We didn't get home until Friday night (the 30th) until 10:00 p.m. All of a sudden it's Wednesday here and we have to leave on Monday for another week at the Mayo. The nice thing, though, is that, *hopefully*, I will not need another journey north until the end of January.I was really excited yesterday to receive lab tests that closely resembled normal! My liver enzymes are essentially normal, after being high for four weeks now. My eosinophils are still out of control, and my platelets dropped even farther than last week (down to 32k), but my red count went up, my hemoglobin went up, and my white count is still within normal range. All very exciting. The only thing that gave me pause was that Dr. Shah (my hematologist at Mayo) scheduled a bone marrow biopsy for next week while I'm in Rochester, when I wasn't scheduled to have one until the end of January, and I just had one 30 days ago. I want to call and ask what in the world he saw in my blood work that made him decide I needed another biopsy, but decided I would trust the process. As I keep reminding myself, it is what it is.Last night I got to go to my local Celebrate Recovery (CR) group in Owasso. I haven't been in eight months! I was so unbelievably excited to see everyone, and to get so many great hugs (I went back for seconds and thirds). In my "old life," I couldn't have trusted that people would actually be glad to see me, or that I truly was a person others could or would love. In my new life following Christ, not only do I trust it, I believe it and revel in it. And I love them all, too. The lesson was on the seven reasons we get stuck in recovery, and it was a perfect lesson for my first night home. I also collected my 8-month chip for facing hardship with no murmuring or complaining, and praising God for the trials.I'm having to work harder on balance than I anticipated. I'm still learning my new limits. I won't feel like I overdid it, but then my body quits working and I have to go to bed. About every other day I sleep half the time the kids are in school, just to function. I have done several things I shouldn't have, just because I wasn't thinking. Yesterday I decided to clean one refrigerator. There were some containers that had moldy food. I opened them to verify they were no good, putting me at risk of inhaling mold spores! So then I told the two older kids they had to clean the second fridge because I couldn't open containers with moldy food. Stuff like that.I am working putting my head on straight as I prepare to leave for Mayo again. I really, really wish I could stay longer first. Those nagging fears of getting "stuck" there because they find more wrong, and that I might need additional treatment before I come home, are very prevalent. I keep turning them over to God, reminding myself God is in control, that He brought me home safely this time and He will again, etc. I guess because I've not had an "in and out right on time" experience with Mayo, I'm a little skittish.And the kids are having their own issues. They all know the trade-off: coming home when I did meant I had to go back in two weeks. But they are already stressing about my leaving. Yesterday I wasn't home when Maggie got home from school, as I had an appointment. By 5:00 she was weepy and anxious, "where's Mommy?" The kids get off the bus and make a beeline for me, as if touching me and hugging me proves I really am home, that they are not dreaming. I am in Mom's Domestic Bliss right now!!Speaking of domestic bliss, I am going to go start dinner. Slow and steady marks the course. But we're all getting fed every day. Find your bliss today. Revel in it. God gives us abundance in many ways, every day, but sometimes we have to look harder to find it. In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

Today was a strange day.  I have been working on the patience to get TO this day, the day I was fully expecting an answer to the pressing question:  when do I get to go home?  And here I am, without an answer.  I know faith isn't faith if not challenged, so I am accepting a big challenge here!  Sheesh.  I remember a book from when I was young.  It was called, "Are You There, God?  It's Me, Margaret."  That's how I feel today.  Are you there, God?  It's me, Corrine.  Please, may I go home?  Thank you.  :)

I went in for my lab work nice and early so the results would be posted before I saw the doctor.  Get into my appointment and I did not get the see the doctor!  He was presenting a paper at some conference at the Mayo today.  So I saw the nurse practitioner, which normally would not be a problem, only she was not up to speed on the last two weeks' activities, and was unable to answer most of my questions.  She promised to email my regular doctor, Dr. Shah, and call me when she got an answer from him.  Dr. Shah has been in India for a month, and is in the process of traveling home--he is supposed to be back in the office Thursday.

Anyway, so my platelets tanked this week, which means I got my two week upward trend and then lost it again!  I was like, see? if you had let me go last week, I would have been home before they tanked.  Hahahahahaha.  So many things can cause platelets to drop--infection, inflammation, etc.  The issue is: is the cause related to a reason I must stay at the Mayo?  They were at 64k last week, so I was finally above 50k, and today they were at 36k.  Good Lord, if it's not one thing it's another.

And I have spent my whole life believing that eosinophils were low-level white counts that didn't matter too much . . . who knew that increasing eosinophil counts were indicative for graft-vs-host disease after a transplant?  I certainly didn't, but the specialists here were all over it.  And now everyone who reads my blog knows.  Two weeks ago I was at 0.5, which is high. Last week I was 1.41.  Today I was at 2.61.  My eosinophils are at 45% of my white count, which is more than the neutrophils.  So there is clearly something going on internally.  It would help if I were sick, or had some more symptoms they could track.  Right now they think the GVHD is probably in my liver and gut, but they don't have a positive biopsy result.  At least the liver enzymes have come down some, although they are still elevated.

And the level of CMV, which reappeared two weeks ago, is climbing.  This was the virus I had all of September and part of October, going in for IV meds twice a day.  It was welcome news at the time that the CMV never settled in an organ, that it just circulated in my blood stream.  But now that's reactivated, we're back to square one on that front.  The doctors said we wouldn't start treatment until the levels went back above 200, because it's still possible my body, with its new immune system, could fight it off without help.  So we went from "undetectable" to "minimally detectable" with a level of less than 35, then to a level of 57 to a level today of 145.  Science is pretty amazing, though.  The levels increase at a very predictable rate, such that the resulting graph is a perfect upward curve.  Based on the numbers, I will be well over 200 within the week.  We had to do the IV meds last time because the oral meds are prohibitively expensive.  So, when I go back to Talala, I would have to drive to Tulsa twice a day for two hours to receive meds.  In the meantime, it's possible I will need to see Infectious Disease again.

I just have to wait on my doctor to look at all the clues, reach a conclusion, and then develop a plan.  Tomorrow, preferably. Easy peasy.  :)  What was so funny today, with the NP not being in the loop, was that she said it was okay to go home, and we're like cool, and she follows up with, and then just come back in a week.  At that point, we're saying, hmm, we are not on the same page here.  (If I lived within four hours of here, I could have been home two weeks ago.)  Talk about a few seconds of unbridled excitement.  :)

I truly am committed to doing whatever the doctor thinks best.  I just don't want to stay "just in case" I'm coming down with something.  It is what it is.  God has protected me this far; I don't think He's going to stop now.  I feel safe going home; now I need the doctors to feel safe in letting me go, given all the warning signs they are seeing right now.  In reality, I've been a walking danger sign for months!  I've trusted God for everything, and He has graced me with His protection from serious side effects.  If I get home and the CMV lodges in an organ or GVHD can't be controlled from there, I come back.

I've got a Christian (Amazon Prime) station playing, and all the songs coming on are so GREAT!  I can't even sit still because the music moves me.  "It is Well With My Soul" is playing right now.  So, here I am, journaling my frustration at still being in Rochester 123 DAYS after transplant (and 148 days away from home), and feeling peaceful singing along with this song.  Because, it is well with my soul.  God comforts me.  Any disappointment I have is short-lived, because I have such faith that the outcome is God's.  I will go home at the perfect time.  For example, if we had left two days ago, we'd be driving home in blizzard conditions through three of the states we have to drive through on the way.  Yuck!!

It is really cold here, though.  In the teens.  I wore my new long johns to clinic today.  Along with my hat and gloves and scarf!  Layers rule, people!!

If we get home this weekend, it will be exactly five months since we left.  Unbelievable.  If I had tried, ahead of time, to imagine being away that long, I probably would have talked myself out of it.  I would have felt it impossible.  By my committing to doing this, and by my committing to trusting God through every step, He has broken it down into manageable pieces for me, so that when I look BACK I can see everything and marvel that I did it, but at the time I was only focused on the day in front of me.  There are several people going home tomorrow, and one patient is one who also had an allogeneic transplant.  He is going home on Day 99.  You know how I know I trust God?  (Well, at least one example.)  I am very happy for him, even though I'm not leaving yet.  Without faith, I would feel as if God was abandoning me, or didn't care any more, or that I had disappointed Him in some way.  I would be wondering why this other guy is going home and I haven't left yet.  Another patient, who also had an allogeneic, went home last week on his Day 100.  (We were like the three amigos, the only three allogeneic's here.)  I was happy for him, too.  How peaceful to know I can feel joy for others without questioning God's plans for me. I think right now I am the longest continual resident here.  I've seen dozens come and go, and I'm so happy when I see them leave.  Now, just in case God is listening in, yes sir, I still want to go home ASAP!!

I had a sweet phone call with Kyan today.  He called to say, "I heard you're making a Sam's run, so can I add things I'd like?"  He was so polite and sweet, and he went to his siblings' doors and knocked and asked everyone if they wanted anything else.  I can't wait to get home and hug him and squeeze his cheeks and kiss him and snuggle until he begs for mercy.  Hahahahahaha!  The big part of my Sam's list is restocking all my baking supplies so I can make holiday trays.  The kids will help and then we'll take trays to all the people who have been helping while we've been away.  Christmas this year is going to be about acts of service.  And while I know people are glad they have been able to help, I suspect there will be more than one or two who will be extremely grateful for the break in service!!

I am going to go to bed at a decent hour tonight.  Last night I did not sleep well.  I hate to admit that "worrying" in any way about what the doctor might say was keeping me up, but that's probably a big part of it.  I got back from clinic, laid down on the bed with my hands in my pockets, and woke up more than two hours later in the exact same position, with my hands still in my pockets.  Now that is saying a lot, for me.  It's strange to know that as I go to bed this evening there are no tests pending . . . we're just waiting on word back from my traveling physician.  :)  I am NOT going to drive myself insane with wondering if Mayo will call at 8:00 a.m. or noon or 3:00 in the afternoon.  It is what it is.  I surrender this to God.  We already have a plan.  If we get loaded up early enough, we'll head out in the afternoon; if we don't get the call early enough to do that, we'll load up so we can leave Thursday morning.  Either way, we're not going to drive the entire way in a single day (although Scott has made a bet I won't be able to stand stopping).  I'm just feeling certain I'll be home by the weekend.

Life is so precious, people.  Enjoy the moments as they come.  Only God knows when they end.  Give someone you love an extra kiss tonight.  In Jesus' name, AMEN.

 

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Journal entry by Corrine O'Day Hanan

Today is Thanksgiving, and I had dearly hoped to be home to spend the holiday with my family and friends.  Paul and Mary are knocking it out of the ballpark when it comes to the dinner plans!  In keeping with my faith that God's timing is perfect, I have accepted my time here in Rochester will last a little while longer.  The Gift of Life Transplant House has a reputation for putting on a really, really nice Thanksgiving Dinner, and we're about to find out.  Volunteers have been here for two days bringing food and cooking turkeys.  I went into the kitchen a while ago for a cup and saw a roaster (the size I cook my turkeys in, a 20-quart) full of steaming mashed potatoes.  I can hear an electric knife whirring away, presumably cutting up the turkeys.  Most of the residents signed up to bring something as well--Scott and I got an Italian cream cake and a carrot cake from Sam's--so there will be no shortage of food.  Even though I'm away from everyone, and am especially missing the kiddos, I am filled with so much gratitude and love that the whole "Corrine universe" feels right here with me.

Everything going on here, right at the "end" of my transplant away-from-home time, seems tedious, and I have to pray a lot to stay strong.  Early signs of graft-vs-host disease are showing up in my blood work; that's why I'm having to stay a little longer.  I was completely weaned off the immunosuppressant two weeks ago, and now that my new immune system has been given free rein to take over, it has to learn that "my" organs are supposed to be in this body with the donor's blood.  Right now the donor cells are lining up to attack organs--at this point thought to be my liver and gut--as foreign.  A little bit of GVHD is actually a positive thing, and a little bit doesn't even require treatment.  So part of what's going on now is figuring out, (1) is it GVHD, (2) how serious is the GVHD, and (3) how are we going to treat it?  One option is to put me back on the immunosuppressant, and try to wean again later.  The problem with that is twofold:  it can also suppress the new system's ability to kill off remaining cancer cells, contributing to relapse; and it would also cause the cycle of magnesium deficiency to reactivate, requiring IV magnesium again.  Not only that, but the minor symptoms like the tremors would come back.  Another option is to start me on steroids, which has its own set of problems.  Steroids and diabetes don't play well in the body together.  Steroids can cause its own brand of damage to the body.  Long-term, the GVHD can become refractory (immune) to the steroids.  It goes without saying I'm not a fan of the associated weight gain, either.  I guess the bottom line to all of this is that it's a tweaking issue.  Finding the right combination of drugs to give my body the best possible chance to heal.  The side issue to all these issues is my doctor's desire to give me 4-6 rounds of maintenance chemo (the Dacogen).  He calls it extra credit, so it's not the end of the world if I can't reach the point of being healthy enough to withstand it, but there's research out there which demonstrates maintenance chemo is very useful in a certain population--of which I fit into the narrow criteria for its use.

All in all, though, I feel pretty peaceful today despite my not being home.  If Thanksgiving didn't fall so early this year, I probably would have been home for Thanksgiving, because I believe I'll be home, or at least close to home, this time next week.  I have no desire to do anything but get some major snuggle time with my kids! I'm really excited to make it to CR as well.  I don't have to wear a mask unless someone is ill -- if I had gone home before now, I would have had to wear a mask to CR, so I just keep finding benefits.  :)  If my platelets take another jump this next week, and my red count keeps going up, I'll be able to drive soon, woo hoo!! 

I'm thinking about all the organizations across the country that prepare and serve Thanksgiving meals to the poor and homeless.  What a great service.  I read a story earlier this week about an organization in Kansas City which feeds the homeless at least once a week at picnic-type lunches.  Volunteers prepare the meals in their own kitchens, and then the group of volunteers meets at the park to distribute the food.  Well, Kansas City officials say the food isn't prepared in a commercial kitchen, and object to the volunteers feeding the homeless.  Last week, one of the city inspectors actually confiscated the food, put it into black plastic bags, and then poured bleach all over it so no one could eat it.  Volunteers say what the city actually objects to is the homeless "congregating," as it offends the local neighbors . . . stories like this are so sad.  I just think about what Jesus said about "the least of these."  So, now, people not only want someone else to feed the poor, they want that someone else to feed the poor somewhere else?  There is so much money in this country, the United States of America, that not a single person should be homeless, much less hungry.  What is wrong with us?

Our room here at the Gift of Life Transplant House is the first room next to the kitchen.  I can hear the residents lining up . . . must be time to start serving the Thanksgiving Dinner.  They previously said "about noon," -- well, it's definitely almost noon.  I will end my note for now and maybe add more later.  Today is a day to give thanks.  I pray everyone finds a reason to be thankful today.  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

Today marks 133 days since we left home; 108 days since transplant.  My need to go home is getting stronger; I'm trying to be faithful and patient.

I have now been off the immunosuppressant for one week.  So far, no symptoms, but today's lab work showed increased liver enzymes.  It's a possible early indicator of liver graft-vs-host disease, but all we can do is wait and see what next week's numbers look like.  My red counts are coming up, and my basic white count and neutrophils are NORMAL!  My platelets are lagging behind and are still under 50,000.  The doctor said, "if your counts are better next week and if you still are feeling as well as you are right now, I see no reason you can't be home by Thanksgiving."  You would think I would be very excited about that, but there are so many IFs in that simple sentence.  IF my counts are better, when this is the very first time in this entire process that all three of the main liver enzymes they test are elevated.  IF my counts are better, when the platelets are just lollygagging around.  The rest of the doctor's words were, "if not next week, very likely the week after."  I probably should mention "the one week, but if not then, the week after" is what the doctor led with.  Hahahahahaha!  We like to focus on the positive, right?  I zoned in on the one-week part.

The other thing that made me nervous was that liver GVHD in isolation is "very rare."  I hate when doctors say that.  Those who have known me for years and years know I seem to fall into that category where, if it's possible (not even close to probable), I turn out to be that person!  I'll give you a few examples:  when I was diagnosed with Hodgkin's the first time, cancer was the very last thing on the possible diagnosis list, because I was "too healthy" and "so young" and the only reason the doctor was going to check was because it was prudent.  Or, that time my white count was suppressed and I was on this medication where white count suppression was possible in 2% or less of the patients who took it.  (Yes, I was taken off the med.)  As recently as this year, with regard to THIS illness, MDS was the last of four possible diagnoses--"we should check for it, but it would be so rare to contract this far out from your cancer treatment."  I also just remembered that when I went into the hospital in August, the doctors said they had to put me in because I had fever and neutropenia (low white count), which meant they had to treat me "as if" it were an infection, but the odds it was due to an infection were very low . . . I suppose you know the end to that story.  It was an infection.

Anyhoo, I'm not "worrying" per se, but I am so ready to go home that the mere idea of a delay is stressful.  I was hoping to be home already, and it got pushed back two weeks.  That delay took a little bit to get used to and process, but I moved on.  Now, if the liver enzymes don't elevate further in this next week, and my counts continue to improve, I could still go home.  Life would be so great if I could get something in writing!  Realistically, even if I had it in writing, there would be some paragraph at the bottom in small print where it said, "subject to the following terms and conditions. . . . "  So I'm definitely in that place where I must remind myself to take it one day at a time, that I have no control over what my liver enzymes are doing, that God is in charge, and that I will go home in His perfect timing.  However, I STRONGLY desire that His timing and My timing are synchronous.

Maggie called tonight after school, just chattering away.  She very clearly remembered that I had a doctor's appointment today and that I had told her I would have a better idea of my arrival home after I saw the doctor.  I told her next week was still a maybe, but I can't promise because we have to see what the doctor says.  She said, "but I already told my whole class I was going to get to spend Thanksgiving break with you!"  She was so sweet, though.  She is excited about a week off from school, too.  I thought it was extraordinary that she remembered TODAY was the dr appointment.  I miss them all so much.

Kyan's football season is over, with the football banquet taking place yesterday.  I can only imagine how nice it will be for Rick to get a few days in where he doesn't have to take some child somewhere.  :)  Today is his two-month anniversary as caretaker in the house.  Yesterday I told Jeanne that little fact (which she repeated to him while we were on the phone), and he said, "two months?  Are you sure it's not been two years?"  Jeanne and I laughed about that.  Even for me, it feels longer than that, so I'm sure it feels longer for him.  Not to mention Jeanne, being without him all week and coming up from Muskogee every single weekend.  She has cleaned and cleaned, but still finds time to take the kids grocery shopping and make a few batches of cookies.  Jeanne's mom is 89 and still does her own shopping and gardening and even just had her shoulder replaced and is already working it . . . so we all know what we have to look forward to in Jeanne's later years.

Mary and Paul were over yesterday and slaved away in the basement and garage.  Our sump pump set-up isn't working like it should, so Paul is going to create a new place to put the sump pump.  But the basement is cleaned out, washed, and bleached, so I will be coming home to no mold in the basement.  Mary called and could hardly talk because of coughing from the fumes.  I was chiding her, "Mary!  You need to wear a mask!" and she said it was irritating her or something to that effect, so she took it off.  Yikes.  I just hope she doesn't get a lung burn or something.  Mary is one of those people who will work and work and work because she wants to get it done.  She and Jeanne have a lot in common.  How did I get so blessed to have them in my life?

Paul also had this goal of putting up shelves in the garage near my freezers for me.  I envisioned this set-up of a simple, single shelf across the wall, overhead from the chest freezers.  What was I thinking?  Paul never does anything "simple."  He created this massive 24' long shelving unit with three shelves, and it's all worked perfectly into the space where he used every available inch and matched it up with the freezers.  :)  Paul and Mary and Jeanne and the kids got all my less-used kitchen stuff (like my catering supplies I use at Thanksgiving and Christmas) put up on all the shelving.  All this activity just fuels my desire to be there with them!

I am deciding it was a good decision to journal just now.  I was really bummed out after my doctor visit.  As much as I try to rationalize certain feelings, sometimes I have to process them before I can reduce their impact.  Well, "sometimes" is probably a bit optimistic.  The real word is "always."  I can talk about them, write about them, talk to God about them--there are multiple steps in the process.  In my life today, there's really not a single feeling I don't talk to God about.  If it's a happy feeling, I'm praising Him and thanking Him.  If it's a sad feeling, I'm praising Him and asking for Him to comfort me, all the while thanking Him for everything He does for me.  I fret about the stress my absence is causing my children and all the people who have stepped forward to help at home--I know it will be easier on everyone when I get there!  I am blessed that the people who have been taking care of my kiddos--from Paul and Mary to Anthony and Kristan to Rick and Jeanne--are all faithful Christians who have done all of this because of their love for me AND their love of God.  It's so mind-boggling and humbling.  I love them all.  God has blessed me so much by putting them in my life.  I hope I can help others for years after this.  Now I am starting to ramble.  I am praising God and praying for the green light to go home next Tuesday . . . if anyone wants to pray along.  Tee hee.  In Jesus' name, AMEN!!

Journal entry by Corrine O'Day Hanan

Well, today is Day 103.  I am processing daily this lingering sense of foreboding I have been feeling.  Today I have been fighting back tears all day, and notice I have less patience than usual.  I am downstairs doing laundry, and decided I would write.  Originally, I was going to write privately in Word, but then I decided I would include it on my blog.  For all I know, this is part of the transplant process.

I do know I am suffering from post-election trauma.  I am a Democrat living in a VERY red state.  We made some inroads yesterday, but it was a disappointing outcome for me.  I was so proud of Oklahoma for the teacher walkout, for the push to elect more people who will actually fund education in this state, and we didn't quite get there.  What's frustrating for me is that I perceive so much of the "problem" in discussing issues here is that we have, in general, an uninformed electorate.  I love living in a country where we are free to discuss our opinions, and I don't want that to change.  I just want some rules that would make it illegal for politicians to tell lies.  It seems that if you tell a voter the Democrats are going to eliminate some tax break that's favorable to him or that the Democrats are after his guns, those are FACTS in the voter's mind.  There's no checking it out, looking to see if that's a tactic or flat-out lie.  

I had a really nice conversation yesterday with a patient who was on Day 1 after her transplant.  Turns out she is a Presbyterian minister, and we had a great talk about God and Christians.  As I've been walking my walk, it has become more difficult for me to understand how people who claim Christianity as their true faith engage in the things they do.  As I've walked the walk, it has become startlingly clear that everything I do, right or wrong, is between me and God.  As a Christian, I am not to do something "nice" for someone and go bragging to the world how nice I am; God knows my heart.  If I do something wrong, I ask forgiveness from God and seek amends with whomever I have hurt.  I don't go online or to close friends and seek to defend my "position" or seek kudos for doing the right thing by asking for forgiveness.  I am digressing.  If Christ told us to love each other, then how can ANYTHING other than pure love suffice?  I think about how much I love the people in my life, how much I love my children.  I have asked myself could I possibly love some child I have never met as much as my own?  I have to trust that if I encountered a child who needed something God would give me what I need.

When Jesus commanded the disciples to go out into the world (this was after he was resurrected) to teach people about Him, he told them not to take money or food or even a second pair of shoes.  They were to trust they would be provided for wherever they went.  And they did it!!  Right now there is a caravan of immigrants coming through Mexico to seek refuge in this country.  Most of them have nothing.  They are coming from countries where, if they didn't flee, they would be murdered by gangs.  Under our constitution, they have a legal right to come here and ask for asylum.  And all around me I hear people righteously, indignantly, angrily, protesting their arrival.  God gave humans this planet.  This planet is our home.  I can't fathom the anger emanating from people who don't want "aliens" here, when all through the Bible mankind is instructed to accept aliens as their own.  We don't want to feed those children because they had the misfortune to be born in the country they were?  I'm so heartbroken.  I do remind myself that I have to love these people just as much.  I think if I didn't remind myself to do so, I would say ugly, mean things to them so they would change their ways!  Can you tell I have a long ways to go in my walk? And is it not somehow poignantly significant to recognize that each human on this planet is facing the same questions?

The other post-election sadness is knowing the fight for health care for all continues to rage.  I am here at the Mayo Clinic, one of the best hospitals in the world, blessed to be receiving care because I am covered by two kinds of insurance.  Am I wrong in feeling that everyone should have the same access?  With the political divide we have in this country, that's still a ways off.  I am grateful to be here; I am sad not everyone gets to come.

On Monday, I got my weekly lab work.  I have to have two consecutive weeks of upward trending counts.  My platelets and white counts are moving up; however, my red count continues to drop.  My hemoglobin was only 8.7 this week--which also explains to some extent the reason I've been so tired!  I took my last dose of the immunosuppressant Monday; so far, so good.  I didn't realize it would feel so scary.  Kind of like the first walk across the tightrobe without a belt, even knowing there's a safety net below.  I'm immensely vulnerable these first two weeks, as my new immune system starts flexing its powers.  While I was taking the immunosuppressant, its job was to suppress my immune system to help prevent graft-vs-host disease.  Now we're not artificially suppressing my immune system anymore!  Come on, German blood, take over like a warrior!  Hahahahahaha.  I also got to quit taking the Levaquin, as my neutrophils are up.  The other issue with my blood work that is showing up is that my inflammatory markers are up, indicating acute infection or inflammation.  We already know I'm not harboring infection, so it has to be inflammation.  But where?  Could that be the cause of my abdominal pain?  Is it an early indicator of GVHD?  Answers will arrive, but I don't have any today.

My biggest challenge this week is to continue (even if I need frequent reminders to myself) trusting God's timing.  For example, the Gift of Life House will be hosting a Thanksgiving Dinner for everyone who will be here through the holiday, but we have to sign up.  I haven't signed up yet.  I do things like this:  well, if my hemoglobin goes up Monday, and the other counts are still going up, and if all three numbers hold for a second week, then technically the 19th would be two weeks of upward trending.  If they would hurry up and figure out why my inflammatory markers are high, they could get me fixed by the 19th.  I'm supposed to get my flu shot on the 20th if there are no issues.  I have an appointment on the 21st, but I could probably get in on the 20th if that was the only thing holding me here.  On and on and on with the endless list of "IF" "IF" "IF" which is not productive.  Then I look at God and say to myself, Breathe.  There are a lot of things which must happen for me to go home before Thanksgiving, so I should just go ahead and sign up for the dinner.  But does that mean I'm doubting God if I do?  OR does that mean I am trusting His timing?

The cardiovascular department at Mayo sponsored a spaghetti dinner tonight.  It was really yummy.  There was great fellowship with the people at our table.  Scott and I were enthralled with tales of growing up in Minnesota and North Dakota winters!  One woman said there would be so much snow her brothers would have to walk on top of the barn (because the snow went all the way up to the barn roof), and shovel paths in the snow so they could take the cattle, one by one, to the well.  My favorite line of the night was, "in North Dakota, we have two seasons:  Winter and Construction."  I laughed and laughed.  Most of the people at the table concurred that the winters are getting milder up here; not as many months of the season or just not as many feet of snow.  I can't remember if I've told this story yet, but when Scott and I were driving up here, starting in about Iowa, we'd go through towns where the fire hydrants had these antenna-looking poles attached.  We could not figure out what they were for, so we asked.  They allow firefighters to find the hydrants when the snow is so high it covers them up.  And the poles are a few feet long because the snow gets that deep.  Tonight we learned that if you have a hydrant on your property, you are responsible for keeping the hydrant cleared of snow at all times.  That does not sound like fun in sub-zero weather.

So, I may not have completely figured out what is going on with me this week, but it does feel good just to sit and write.  I miss everyone back home and cannot wait to get there!  However, I am committed to trusting God's timing and the process.  Hugs to everyone who is experiencing a bit of post-election stress.  Take a day to appreciate the little things around you.  God is in everything.  In Jesus' name, Amen.

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Journal entry by Corrine O'Day Hanan

Last night I went to bed saying, "this is my last night in the double-digits."  Because this morning I was at Day 100!  Major milestone.

What's really strange is that I woke up with a profound sense of foreboding and distress.  I don't know if I was having a troubling dream and hadn't been sleeping well or was cold (it was a little chilly in the room).  For every other milestone I've reached, I've awakened with a sense of excitement and hope.  I almost didn't want to write about it, but avoiding the feelings is not the purpose of my keeping a journal throughout this process.

I know one issue is that I was really, really, REALLY looking forward to going home this next weekend.  I thought, Day 100 falls on Sunday, they've already started my post-discharge testing, and we can finish up appointments this week.  That would leave the way clear to packing up and leaving on Saturday and arriving home at a decent hour Sunday.  When I found out on Tuesday of last week I was looking at more of a "Thanksgiving-ish" discharge, I was more disappointed than I thought I would be.  I have been praying and reminding myself of the commitments I made at the beginning of all this, so I'm working through it.  My faith sustains me.  This past week is the closest I've been to real tears during this entire year.

And it's fear-based.  I know it is.  When I was here in March, I was only supposed to be here a week.  That stretched into 24 days.  It got the point I felt that every time they ran a test they would find something else out of whack, which would delay me another day or two.  Up until this past week, when I knew for sure this week wasn't going to happen, I've been very accepting of possible delay, and I haven't worried about the reasons for the delay.  And, especially after the bone marrow biopsy results came back perfect in every way, I know that the delay is not due to recurrent disease, which should make me very happy.  I was very happy until the reality of the extra time set in, and I was reminded of the March episode . . . like I said, I'm praying and processing.  Just being real about how I'm feeling.

Getting off IV magnesium doesn't feel like a big deal.  My magnesium levels have already started to stabilize just with weaning the Tacro down to twice a week. 

Getting an "upward trend" on my counts is a little harder.  They are only checking my labs 1-2 times per week (up until recently, I had labs drawn every single day!), so the nervous part of me is saying, wouldn't we see an upward trend faster if we tested more often?  Hahahahahahaha!  That is soooo impatient, and, obviously, no matter how often we checked it, I would still need two weeks of upward trends.  I crack myself up.  Lab day is tomorrow, so I will know by about noon what this week looks like.

The scariest part is the weaning off the immunosuppressant.  I am ignorant of the "normal" series of events . . . so when they say they have to monitor me for two weeks after the weaning (and they are monitoring for graft-vs-host disease), it feels like I have to be on the lookout for every weird symptom on the list I have been provided by Mayo:  "Symptoms to report to your health care team."  So, my questions will include, how soon do symptoms show up, if they're going to show up within next two weeks?  From what I have been taught during this process, GVHD can show up for months or even years after the transplant.  I want to understand what's so special about these first two weeks.  :)

Other than general uneasiness today, I have been feeling more tired than usual.  There are reasonable explanations for that.  One is that last week I had to present to clinic every single day for tests and appointments, instead of the MWF I've enjoyed the last two weeks.  By Friday, I was like a two-year old needing a nap!  Two, on Saturday I cooked dinner and didn't utilize a stool for support the whole time.  Unfortunately, by the time dinner was ready, I had to rest to regain the energy to eat!  Three, at least part of the week my hemoglobin was under 9, which always makes me tired.

I am one of those people who handles high-stress situations very well, but after the danger passes falls apart.  I think getting through this first hundred days was very high-stress, and now I'm faced with the lower stress (but not necessarily less important) of managing the day-to-day challenges of a first-year transplant patient.  I'm not falling apart or anything, but I feel myself needing a breather to get ready for the next nine months.  :)  Oh, but wait!  Day 101 will still come tomorrow, whether I've had a breather or not!  I'm being a little silly, as it's 4:00 in the afternoon and I am officially done for the day.  I have cleaned the room and the bathroom, ate a good high-protein breakfast, and am using the rest of the day to relax.  Tomorrow is back-to-back appointments all day, so no rest really.  And then on Tuesday I have my (hear the sarcasm in my voice) most-fun-treatment-ever:  pentamidine breathing treatment for my lungs.  I'm not healthy enough to go on Bactrim just yet (Bactrim being the lung protection the first year of transplant), so I need another breathing treatment to coat my lungs before I go home.

Last night one of the patients was talking about some new slippers she had because her feet were too swollen to fit into her regular ones.  That reminded me of how I had to wear those hospital footies for a while after I got out of the hospital in August because my feet wouldn't go into my shoes.  And it was a sweet memory, because it reminded of just one more little hurdle I cleared. 

And I get to thinking about all the little things I have to look forward to:  being able to wear deodorant again, getting my platelets high enough I can shave my legs, going out in public without a mask!  Oh, the list is so exciting!  Seriously, though, little things like that can be quite fun.  :)

The main thing I've been thinking about, for a very long time now, is how grateful I am for all of this.  Healing and family and friends and doctors and the Mayo--God has blessed every aspect of this journey.  I read stories like this one:  one of the members of my BMT FB support group is the caregiver to her husband.  He's a year post-transplant and got a glowing 1-year report:  still cancer free, biopsy looked perfect.  TWO WEEKS later, he fell ill and tests showed the cancer had come back very aggressively.  Just like that.  It's sad to read stories like that, but they are also reminders that we really do have to take each day as it comes.  Things can happen so suddenly--not just cancer, but a stroke or heart attack or car wreck--that unless we are mindfully present and grateful for each day, we miss out.  I don't ever want a new day to begin where I wonder what in the world I did with my day yesterday.  Many times I get to the end of a day wondering if I did enough for God.  I don't ever want a day to end that I don't pray to Him and ask forgiveness for not doing enough for Him. 

All the vitriol which is increasing the closer we get to mid-term elections is heart-breaking.  I just don't understand how people who claim to be "faithful" (whether Christian or Muslim or Jew or anything else) can spew such intolerance at others.  I WANT to understand.  When I was in law school, the biggest thing we were trained to do was to view the same set of facts from multiple perspectives.  That does not come naturally to me in all situations.  Anyway, I look at people who engage in acts of violence or hate or intolerance and I wonder why.  What are they thinking?  Are their behaviors in response to fear?  Do they worry that tolerance for others will result in their being insignificant, or perhaps even just less significant?  Are they unable to love a brown child as much as they love their white children?  I know there are no easy answers, but there has to be a starting point.  I have these conversations with myself, and I say to myself, "well, start with me.  I can be kind and gentle and loving today."  The other thing is to keep reading my Bible, looking for answers on dealing with people who do not tolerate points of view different from their own.  There was plenty of that in Biblical times!

Well, I will close today with a reminder to go vote if you are registered.  It's not voter fraud that's the problem in this country; it's a failure to vote in the first place.  I look at other countries who are years behind us in voting procedures; citizens who walk for days and wait in line for days for their chance to vote, as it's a right they finally have.  In this country, women and minorities had to fight for their right to vote, and we have tremendous issues with disenfranchisement of votes.  Yet year after year, the turnout is dismal.  I listen to people talk politics in coffee shops or the corner convenience store -- then hear them say they don't vote because it's pointless or all politicians are corrupt or their votes don't matter.  Our system needs improvement, but it's not going to improve if all we do is complain.  We have to ACT as well.  GO VOTE!!  In Jesus' name, Amen.

Journal entry by Corrine O'Day Hanan

Today marks six days until Day 100.  Today I am at clinic until probably 4:00 (got here before 8:00), so I thought this would be a perfect time to catch up.

The most exciting recent news is that my bone marrow biopsy came back cancer-free.  I had already posted it on FB and sent numerous texts when Scott says, "you should probably wait until you get the final results."  But my doctor called me on a Sunday to let me know the biopsy looks good, so I'm going with that.  We're still waiting on chimerism, cytogenetics, and p53 status before I will have the "final report."

Interestingly enough, however, is the fact that the bone marrow shows "moderate neutropenia with toxic changes and left shift."  I have had the left shift at least three weeks now, with no real explanation.  A left shift indicates an active inflammatory response or infection.  I am wondering if this abdominal pain I've now had for nearly three months is the source of the left shift.  Makes sense to me, but I'm not the doctor, hahahaha!  I should adopt a saying, "I'm not a doctor, but I play one in real life."  

I'm getting very close to being discharged home, and have several little things which need clearing up before I can go.  One is that my counts have been falling during the month of October.  Red counts have stalled out around 10 (hemoglobin).  White counts are staying under 3.  And my platelets have dropped from 100,000 at the beginning of the month to just 29,000 on Friday.  Dr. says he needs to see an "upward trend" before discharge.

Then there's the issue of the constantly-low magnesium.  The working theory has been that the immunosuppressant (Tacrolimus, or Tacro for short) I'm on suppresses my magnesium levels.  As they wean me off the Tacro, my magnesium will straighten itself out.  Last week I took the Tacrolimus only twice, and on Friday my magnesium levels were normal.  So I'm pretty confident that as I wean off the Tacro, I will no longer need these marathon IV sessions to receive magnesium.

The other issue is that, as I wean off the Tacro, I am more susceptible to graft-vs-host disease.  I have had only ONE episode of GVHD during this transplant, and it was a Grade I skin rash.  Very, very manageable.  GVHD which manifests itself during the first 100 days is called Acute GVHD.  GVHD which manifests after 100 days is called Chronic GVHD, and it can be a long-term problem, requiring long-term management and care.  Anywhere from 40-80% of unrelated allogeneic transplants develop chronic GVHD.

This week will be full of post-transplant evaluations--heart, lungs, etc.  Lots of blood work!  Almost fitting for Halloween week, that I'll be giving enough blood to keep several vampires happy, LOL!  Every time they draw blood from my Hickman line, they have to "waste" 5 ml.  Just think how much blood I've "wasted" in the last four months.

A few days ago, as I pondered all the upcoming pre-discharge activity, I was thinking about how useless the past is, except for retained learning experiences.  I have so much life ahead of me that I do not need to spend too much time immersed in past hurts or past traumas.  Instead, I plan to bring forward only the lessons I've learned and focus on what God is asking me to do.  I have engaged in numerous prayers this summer, asking God to forgive me for how long it has taken me to "get it."  The hate and violence in the world around me is overwhelming.  Imagine how it would be if everyone followed their teachings?  I can't speak to the Jewish faith, or the Muslim faith, or the Hindu or any other faith besides my own.  I know what my Bible teaches me, but I would be shocked if any of the other faiths teach hate and intolerance.  I just don't think they do.  When I see what evangelical Christians do to distort God's word (my biggest peeve is "cherry picking"), then I also see what I perceive in Islam as distorting the teachings of the Muslim faith.  God was known by different names to different people in the same Bible.  Each individual on this planet has the ability to have a personal relationship with God.  Any sins committed are between that person and God; it's not the job of the rest of us to judge or condemn or use another's sins to feel superior.  Crazy times.  My goal is simply to stay in tune with God and be still and let Him be God.  More news tomorrow, I hope.  Have a blessed day!  In Jesus' name, AMEN.

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Journal entry by Corrine O'Day Hanan

Today is Day 80 post-transplant.  Scott feels like time is moving slowly; I feel like it's moving faster the closer I get to Day 100.  It has now been five days since I went from IV meds to oral, and from needing to present to clinic for IV magnesium every day to three days a week.  I accept whatever progress I can!  

Thursday was my first day to sleep late in almost 90 days.  I slept until noon!  Saturday I watched college football.  Our poor OSU Cowboys just can't get it together this year.  Two straight losses against teams they should have beaten.  So many mistakes.  But that's the thing with sports:  one team wins, one team loses.  Same with life:  sometimes we win, sometimes we lose.  It's what we do with our losses that matters.

One thing I'm incorporating into my life is that there are no permanent losses.  God has a plan for everything, and everything has a purpose.  So it's not so much a loss as a step toward fulfilling God's plan.  We have to process and we may need to grieve.  I'm speaking more in terms of personal paths--mistakes we make, opportunities we missed out on, boyfriends we broke up with, that kind of thing.  I'm not speaking in terms of the loss of a loved one; that's a whole other conversation.

Now that I've been in Minnesota for more than three months, I'm more focused on completing my treatment than directing my attention on all the losses: things I've missed in my kids' lives, or things going on at church; not being there for my mom when she had her heart attack.  God never works on a single thing at a time; from what I can tell, God works in many lives at the same time within the same situation.  I know He has done amazing things in the lives of my kids at home.  I probably won't know for years how it all fits together.

What I do know is that my recovery has been nothing less than a miracle.  Tonight I cooked a real meal for the first time since my transplant.  Holy moly, I was so worn out by the time I got dinner on the table!!  I was happy, though, because I was well enough to cook a meal.  I've been without my walker almost two weeks now.  Every day I'm a little stronger.  Twice in the last week I have not needed a nap to get through the day.  I'm walking farther before I need to rest.  The only graft-vs-host disease (GVHD) was a Grade I (the mildest) rash.  And a little GVHD is "good" in that it allows my new cells to fight something off without overpowering my new cells.  It's actually called graft-vs-leukemia effect.  Before I came here for the transplant, I did not know that the blasts in my cells were leukemia cells.  If I had not received medical care, the leukemia cells would have continued to multiply until I developed acute myeloid leukemia.

My illness, its diagnosis, and its schedule for treatment were all handled in God's perfect timing.  Such a testimony!  If I had not been diagnosed when I was, I would not have gotten into treatment in time to "get ready" for a transplant.  Everything fell into place perfectly from the minute I arrived at Mayo in March for my evaluation for my cardiopulmonary issues.  I literally got sick and had to be hospitalized within days of my arrival.  I had the diagnosis within the week and a treatment plan in place before I left.  If I had relied on the local doctors, I would not be around to praise God for His perfect timing!

I remember in one of my journal posts talking about my commitment to God throughout the transplant process, and I mentioned it would be nice not to get GVHD--something to the effect that I would still feel I got the full transplant experience without getting GVDH.  God answered that request, and I got "just enough" GVHD to strengthen my system.  I definitely have to write a book, because I haven't written down every single wonderful thing.  John 21:25 says:  "And there are also many other things that Jesus did, which if they were written one by one, I suppose that even the world itself could not contain the books that would be written.  Amen."   That's how I feel about what God has done for me during this transplant process.  He didn't just give me life; He gave me the heart to accept Him in every way and to trust Him in every way.  In April of 2013, I went "ALL IN" with God.  My journey these last few months have taken my commitment from April 2013 and brought me closer to God.  If I died tomorrow, I would go to Heaven knowing He loves me.  I don't think there's anything more comforting or powerful, and for this I am grateful.  I pray everyone's paths lead them to Him.  With Him in charge, there are no losses, only lessons.  This reminds me of the story a therapist told me once:  a little boy was given a quarter, and he carried it in his hand.  His mother had a dollar in her hand, but he couldn't see what it was.  She offered what was in her hand  to her son in exchange for the quarter.  He wasn't sure.  In order to receive what his mother had, he had to release his grip on that quarter.  He had to trust that, if he released the quarter, his mother would give him something better, even though he couldn't see what was in her hand.  

Sometimes loss feels overwhelming, but we have to believe that if God wants us to let something go, He has something much better in place for us.  We just have to trust His plan.  He loves us.  He loves me.  I am grateful.  In Jesus' name, AMEN.

Journal entry by Corrine O'Day Hanan

I actually have put off posting this week, because my mind has been swirling with all sorts of thoughts; for some reason, I've been reluctant to write them down.  I'm excited, very excited, that I am now 29 days away from post-transplant testing prior to discharge home.  I'm also having to remind myself several times a day to let God keep handling things.

For this first time since I had the transplant, my attention has turned to life AFTER transplant outside the hospital setting.  By now I had planned on having all the "rules" of living with a transplant patient typed up so we could start training the kids for my return.  I had planned on having this last month without much intervention needed -- supposedly by the halfway mark it's more maintenance than anything -- and I'm still on daily IV meds for the viral infection I have, I'm still requiring daily IV magnesium supplements, and my white count has bottomed out and has not yet responded to injections designed to boost the counts.  I'm still having abdominal pain, and I'm still having tremors (but they are much better).  I'm looking at all these things as small speed bumps on my path, but I find myself worrying too much (thus the frequent reminders to let God handle things).  I am not worried that these things are happening.  I am worried they will delay my trip home.  I don't know if all these conditions have to be "resolved" before I can leave.  Thus the frequent reminders that everything is in God's perfect timing and it will all be fine.

I was talking to a heart transplant patient the other night who is 8 years out.  He is here because he has some spores in his lungs they are evaluating.  Otherwise he only comes once a year now for his annual visit.  He said life never goes back to where it was before after a transplant; it just becomes a new normal.  This struck me because I started my whole blog with that concept:  a new normal.  Yet I think I've been so focused on getting through the transplant I haven't thought too much about the notion that I won't be returning to home and picking up life right where I left off.  I will have to ease back into it, keep improving my strength and stamina, and make real commitments to sustaining my health.  I can't go home and essentially "slack off" from the routine I'm having to maintain here.  It takes a lot of patience to take care of myself every day:  from the vigilance about germs to the daily self care and oral care and skin care and and and . . . the list goes on.  It would be very easy for me to go home and start skimping on the daily necessities, which I cannot do.

And, strangely, where up until now I have been so grateful to the enormous community of people who have helped me along this journey, I'm feeling almost a panic not to goof it up and let everybody down.  So many people have put so much of their love and energy into getting me through this--I can't go home and get sucked into my old patterns of not taking care of myself or, more common for me, overdoing it.  Lots of times I think of projects I will do when I get home, most of which I will be physically unable to do!  And how ridiculous would it be, to have a transplant which costs three or four hundred thousand dollars, utilized the help of so many people, which put my family under so much stress, and come home healthy, only to be careless and end up with some preventable infection which ends my life.  I could live a thousand more years, be in complete service to humanity that whole time, and never be able to "repay" all the kindness I have received during this process.  The magnitude is overwhelming, and thank God He knows how to work it out.

I just realized that part of the issue is that I've never been very good at asking for help, or accepting help when offered.  During this journey, I have asked, and I have received, and I have accepted, help from many, many sources.  It hasn't dawned on me until just now that I might still need some help when I get home!!  Hahahaha.  Of course, when I get home, I have four able-bodied children who will be able to do some of those things.
 
I am working to focus on the things I will be able to do, instead of grieving the things I cannot do (yet).  I am planning all the wonderful time I will have with my kids, to do things just for fun.  I am thinking ahead to the parent-teacher conferences and Christmas band concerts and dr. appointments and dentist visits I have to schedule for the kids.  Normal things.

Life is all about balance.  I've cognitively known this for years, yet I always have seemed to be out of balance.  I have put way too much emphasis on "doing" than "being."  I have already changed that in some respects.  Today I was thinking I could clean out our shelf in the refrigerator or do a couple of loads of laundry; instead, after I got back from clinic, I just chilled out and watched college football.  Did I feel guilty a few times?  Yes.  Did I continue to chill?  Yes I did.  :)  (Did OSU win today?  No.  Pooh.)  Since my transplant 71 days ago, I have had to go to clinic every day.  Some days it's only a few hours; other days I spend all day there.  I haven't had a day yet where I didn't have to go, and I've managed it through the grace of God and taking things one day at a time.

I have marveled so often at how God set all this up years ago.  With lots of aspects!  For example, music has always been a powerful medium for me to express myself. After I started Celebrate Recovery, I started listening to Christian music, and listened ONLY to Christian music for years.   Whether it's singing, or playing piano, or listening to certain music, music speaks to me.  So, fast forward to now, and every time I have needed extra "God power," I have turned to music.  We listened to Third Day during my transplant infusion.  When I was in the hospital, I kept singing Casting Crowns' song, "I will praise you in this storm."  Yesterday I was singing Matthew West's song that says, "Hello my name is child of the one true King."  I've been learning "No Longer Slaves" on the keyboard.  I love at the end how the female backup is belting out, "I am a child of God."  And every day I am reminded that I, just one human on a planet of over 7 billion, am a child of God.  I am loved and protected and cared for.  He has met every single need during this transplant, from receiving the best care to having the best friends and best family.  I am grateful.  AMEN.

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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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