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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Journal entry by Corrine O'Day Hanan

One week from today, Scott and I will be heading to Rochester, MN, to start my pre-transplant evaluation.  For days since I received the call, I've been excited.  I'm still excited, but I'm also aware of feeling an intense need to settle things before I leave.  I must have spent more than two hours yesterday changing all the autopay accounts to our primary account, so I won't have to remember to transfer funds.  I was getting all the bills together, to get them paid before we leave.  I have been online creating a Sam's list of things I have to take the transplant house.  I am still finalizing my will and Advance Directive, and I still have to set up the consents so our children's caregivers here will be able to obtain medical care for them.  I am figuring out how to see people before I go.  Trying how not to make anything seem too morbid.  Inside I am thinking, "this could be the last time you see me, so let's make this good"; I am also thinking I want just to take the next step as if that next one is like any other.  I want to prepare my children for our absence, looking for that moment of perfection I can explain the circumstance clearly, neatly, calmly.  I am trying to figure out the most eloquent way I can thank all of the people who are rallying behind me, doing all they can to get me there and to make sure my children are okay.  There are no words invented yet that can possibly convey the magnitude of my gratitude to them.  I am standing firm on my commitment to God to endure this trial with grace, perseverance, joy, and absolute faith.  Sometimes I feel a few tears at the corners of my eyes.  I usually take a deep breath and remember my path.  I'm sure it's going to be okay at some point to cry; crying doesn't mean I'm murmuring or complaining.  I don't even know what's "normal" at this point. I don't feel sad or angry that I'm sick.  I'd be misrepresenting the facts if I said I didn't have some fear--what's coming up is going to be dreadfully difficult and it will make me sick, and weak, and will make me work hard to stay alive.  That's all scary to me.  I also feel somewhat embarrassed, like somehow if I had put more value on my life before now I wouldn't be.  Now I'm one of "those cancer patients."  I don't want people to feel sorry for me.  I feel worried sometimes, but mostly about how my children will grow up without me if I die.  I've always said death is hard on the living--the dead are perfectly content.  Well.  At least the Christian dead.  I don't know enough about the other religions to know their views of the afterlife.  For me, I'm strong in believing I will go to heaven when I die, so if this illness claims me, I will be with God.  I'm not sure, but I also think I have a certain amount of feelings directed toward the idea that, if I endure this illness and stay strong and faithful, I won't still die anyway.  I think I might hate the idea of doing everything I can, and being sick for months, only to succumb to my disease.  I haven't quite named those feelings.  They are still percolating below the surface, still being sorted out in this contemplation of my life.  For all the things I may regret, or wish I had done differently, or better, or even not at all, I will never regret loving any of the people I have loved in my life.  I am happy I found my relationship with God on this side of heaven.  A busy week awaits me.  I'm sure I will spend many more moments in contemplation.

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Journal entry by Corrine O'Day Hanan

This has been a hectic week, and I've not had good access to computer time for my blog.  I like being able to type on a "real" keyboard, not on my phone or tablet.  This particular week was somewhat rough, in that I didn't feel good all week.  Started with a sore throat on Sunday, and every day was a little more sore, a little more swollen.  By Friday I was back in the hospital and will be here until Monday.  Basically, I will get discharged in enough time to go home and load the van for the trip to Minnesota.

Being sick, though, and being severely neutropenic and thus literally housebound, I have time to reflect in depth on this journey.  I seriously cannot truly fathom everything that is going to happen in the next year.  But what I can fathom is the depth to which my life, and that of my family, is going to change.  What prompted my focus on "resolve" is knowing that I have to take the lead on the changes, that I can't expect the family to know what to do, or how to do it, or even why it needs to happen.

Because I've been sick this week, I haven't had as much patience for the smaller things.  I haven't had the energy to care about all the mundane occurrences in everyday life.  It has forced me to conserve my energy and use only what I do expend on the important things.  And really, it has forced me to contemplate how I will want to spend my energy on things in my life after transplant. 

Taking care of myself has always been something I've done after I've taken care of everyone else.  It's odd to consider that I must now take care of myself first, or else I won't be around to take care of everyone else.  This week my daughter, Bethany, got to come spend a few days with me. It was such a joy, such a treat, and all I wanted to do was curl up on the bed and just talk to her.  I didn't have this need to be scurrying around the kitchen, fixing her something to eat, or offering to do her laundry, or asking if she wanted to go do something.  Because I was sick, all I could really do was lay around and we could just talk.  And when I ended up in the hospital in spite of all I was doing to stay out of the hospital, she spent a full day cleaning my house for me.  When she came to the hospital, I would start to get up to get something, and she'd say, "Mom, stop.  Stay put.  What do you need?" and it would startle me, because I'm not used to stopping and asking for help.  It's hard to do.  I need to do it more.  I resolve to do it more.

My mom, and Tina, and Bethany came to the hospital today to visit, and we had the best two hours laughing and talking.  If I wasn't sick, we wouldn't all be in the same place at the same time for two whole hours unless it was a holiday.  After I come home from transplant, I want to do those things on days that aren't holidays.  I resolve to spend more time having fun and just being with family and friends.

This morning, after I got up and ate breakfast, I put on my healing music and did my Bible reading.  It was a peaceful time, and I started my day off good.  I have felt good today.  It's almost dinner time and I am just now getting tired.  After my transplant, I resolve to spend more time in peace and quiet, and less time in busy accomplishment.

In all these years of doing for others, it hasn't really occurred to me I could be doing a better job of teaching my children to take good care of themselves as well.  They are now taking the advanced skills course cliff-notes style.  By the time I get home, they will have a lot figured out for themselves.  I resolve to build upon their knowledge base so the family shares in the overall family management and chores, such that we have more time as a family to do fun things together.

While I am away at the transplant center, my husband will be with me.  I am nervous about depending on him for many of my day-to-day needs, when in our 18-year history I have been the one taking care of his day-to-day needs.  I resolve to let him do this for me.  I resolve to be at peace with it.  I resolve to accept the blessing.

This journey is shaping the course of the rest on my life, in more ways than just the physical management of it.  I am going to document every step.  I am going to share every experience.  I am going to come out the other end stronger and more confident in myself.  I am going to finely develop my RESOLVE.

Journal entry by Corrine O'Day Hanan

Today is the day I was originally supposed to leave for the Mayo Clinic.  Instead, I am still in the local hospital.  Not only that, I'm still waiting to learn if I will be able to leave tomorrow.  The problem is that the local doctors have not determined the source of my infection.  Without knowing the source, they don't know what will cure it.  So they are throwing a combination of anti-fungal, anti-viral, and antibiotics at me, which means I need a 10-14 days IV course, as there are no oral equivalents for the antibiotics.  I'm sure the powers that be will figure out how to make all this happen, but in the meantime I am just reminding myself to breathe.  I would love to be outside right now.

I have very little, if any, control over my circumstances at the moment.  If I profess that my faith is strong, I can't crumble at the first roadblock--which I don't intend to do, of course.  I am feeling frustrated, but I still *know* God has all of this in His perfect control.  I have to sit back and let God handle it.  Physically I feel better, but still have a pretty sore throat and still swollen neck after 4 days of antibiotics, so something is going on.  I have no way of knowing if Mayo could even proceed with the full pre-transplant evaluation until I'm clear anyway.  So if I took it upon myself to decide I was just going to pack up and take off for Minnesota, I potentially could accomplish absolutely nothing.  :)  At this point in my life, I'd like to think I'm a bit over impulsive decisions that get me nowhere.  

I turned on my cool healing music that Bethany introduced me to, and am deep breathing and journaling.  I am inhaling calm and peace and patience and trust, and breathing out impulsiveness and anxiety.  All is well.  My transplant will take place on the most perfect day God will deign.  I am trusting the process.  I breathe in God's love.

I miss my children!  A few hugs and kisses from that crew will be wonderful.  I love the smell of the kids' hair when they've been outside playing, which I know they have been doing today.  All that fresh air and sunshine makes their way onto those heads and, when I hug the kids, I inhale a deep breath of outdoors!  A year from now I'm going to be outside with them, sitting in a chair with a big glass of iced tea, watching them run and play and scream and be full of nonsense.  I'm going to breathe in the outdoors from the glorious splendor of my own outside chair, and I'm going to barely remember sitting in this hospital room waiting to leave for Minnesota.  I will be breathing in as I'm looking up and and I will be thanking God for another day outside.

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Journal entry by Corrine O'Day Hanan

One of my favorite Dr. Suess books is O The Places You'll Go.  One of the places Dr. Suess tells his readers they will go is "the waiting place."  I've been thinking about the waiting place for a couple of days now.  That's because I feel that I'm spending too much time waiting.  I'm waiting on my counts to come up, especially the neutrophils.  I'm waiting on my new pre-transplant evaluation date.  I'm waiting to finish my IV antibiotics so I can leave for the Mayo.  Waiting on the next doctor appointment to clear me for travel.  Waiting on the bone marrow biopsy so we know where my disease is.  Waiting on my new transplant date.  Waiting on my body to feel better so I can do more.

I've been reading Acts and Romans this past week.  My waiting a week or two right now doesn't compare to the years Paul was in prison waiting to be released.  What did Paul do with his time?  It looks like he wrote letters, encouraging others; he prayed; and he bore witness of God to his captors and other prisoners.  So now I am trying to find more productive ways to use my time while I wait. 

Today my younger two kids came home from Bible camp.  I am so blessed that their godparents, Rick and Jeanne, took care of everything this year.  And I do mean everything.  They paid the tuition, got together everything they needed (I was in the hospital), packed everything, got them to the church and picked them up, and brought them home.  The kids had the best time so far this summer, and they haven't quit talking about it.  "Guess what?" is the most frequently uttered phrase today! 

Now, if things had gone "according to plan," I would have already been in Minnesota when the kids got home.  I would have been preparing to meet with the transplant doc tomorrow.  Instead, I'm home waiting on the new plans.  Yet, none of that mattered when I was listening to the kids excitedly telling me all about camp, and everything they did, and how much fun they had.  I would have missed this if I wouldn't have been home waiting.  In this situation, waiting turned out to be okay.

The other thing waiting has done for me is given me time to rest.  I have been feeling a little under the weather since I got sick this last time.  Nothing too horrible, of course, but enough that I'm requiring 12 hours of sleep at night and a 2-3 hour nap during the day, and my physical limitations are such I'm not doing a lot of physical activity while I'm awake.  IF I had gone straight from the local hospital to Mayo, and IF I had started in on all my pre-transplant evaluation tests, I probably would not have scored as well as I will after I get back on my feet.  There are so many considerations involved in a transplant -- heart condition, lung condition, liver condition, overall conditioning, etc. -- that being subpar in any area could either impact my qualifying for transplant in the first place, or, worse, being in less-than-optimal physical condition which would impact my recovery time and/or complications.

Lots of people say perspective plays a large role in how we as humans navigate difficulties in our lives.  I tend to agree with that.  I like to focus on the positive.  So maybe, instead of being frustrated that I'm in a dreaded waiting place, I could view it as being in a healing place.  Every minute I spend waiting on the next step is a minute I am healing during this one.  I am glad to find a different way to think about it.  

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Journal entry by Corrine O'Day Hanan

Today I cleaned my room.  I know that doesn't sound like much of an accomplishment, but I was packing as I went, reboxing things to put up for a while and, in general, preparing the room for my brother and his wife to stay in while I'm gone.  The process of organizing and packing and preparing to leave was rather symbolic of the transplant process as a whole.  I will explain.

My transplant doctor at the Mayo is Dr. Shah, and I like him.  He has told me quite a bit about the transplant, but there are a couple of things pertinent to my entry tonight:  (1) it will be the hardest thing I've ever done in my life; and (2) there are a LOT of moving parts involved.  As I have spent the better part of two days just cleaning my room and organizing my luggage, I have been humbled by all that's involved in this process.

Up north, there is a team of highly-specialized medical professionals getting ready for me.  There's my transplant doctor, of course, but also my hematologist, Dr. Elliott.  I have a nurse coordinator, a therapist, and all sorts of technicians and nurses lined up.  So far I have 19 appointments scheduled in four days.  They will check my heart and lungs and liver and kidneys to make sure I'm transplant ready.  They will even check to make sure I don't need any dental work done, because it must be done before we get started if I do.  I'll have another bone marrow biopsy to see if enough cancer is gone we can proceed with transplant, or if I need more chemo before I can move forward.  The endocrinologist will be working to keep my diabetes under some semblance of control during the entire process.  There are so many pieces that have to fall into place, but I'm trusting my team to figure it out.  I'm in awe at their skill and precision.  I think of all the transplant patients who have come before me, patients from whom my team has learned.  I'm pretty confident that my transplant team could handle just about any scenario that could present itself.  Those people in my life who have known me for any length of time should be grinning right about now, thinking of what kinds of havoc I will wreak upon the poor transplant team--if it's "possible" it can happen, it likely will if I'm the patient.  

But just as awe-inspiring is the work that's going on here at home, with everyone preparing for my departure.  Talk about lots of moving parts!  There are six people--my brother, Paul, and his wife, Mary; Rick and Jeanne, the kids' godparents; and Anthony and Kristan, Mary's daughter and son-in-law--who are coordinating everything from what to feed the kids for dinner to buying school clothes.  And then there's my neighbor across the street, Susan, who called to offer to help get Kyan and Maggie to football and cheer practice.  One of the cheer coaches, Carry, who's going to help get Maggie to games and has brought food for the family on my chemo days.  I have no doubt there will be help with Kyan's football games, too.  My neighbor, Raymond, who'll come over and bale the hay in our absence.  Another neighbor, Melvin, who said he'd figure out a way to come get kids and teach them how to ride a horse.  My next-door neighbor, Lindy, who says just to let her know if we need something and she'll help out.  And friends from church, Sarah and Kim and LuAnn, who are lining up to take Clarissa grocery shopping regularly.  Other church friends say to let them know if they can help in any way at all--thank you Heather and Cheryl to name a couple.  Even Summer and Samantha from Mid-America, who just know me as a customer who comes into the store but heard I was sick, have offered to bring dog food or chicken feed to the house if need be.  Faith and Kim from Wraparound are coordinating services for the younger children to make sure everything transitions well at school this year and that Kyan never runs out of medication.  And then there's my good friends, Recie and Shary and Connie and Tina, who are prepared to give up a week of their lives to come spell Scott as caregiver in Minnesota.  There's also all the people who have donated to the cause:  Bill and Pamala; Jeremy and Micah; Doug and Monica; my sister, Tina; my mom and her husband, Lee; my brother Chris and his wife, Linda; Cheryl; Milana; my brother George and his wife, Michele; and a number of anonymous donors.  And the number of people praying for me is incredible; I have people scattered all throughout the country regularly praying for me.

I am so grateful to all these people.  Every single one of them.  The next few months of my life would look entirely different if I didn't have all of these wonderful souls helping me.  I can't help but believe all this love will help me get better faster.  I coined the phrase, "ridiculously, lavishly, wonderfully loved," in a Facebook post recently.  It's perfect, though.  These people--whom God has placed in my life--love me and are willing to give of themselves to see me through this journey.  As soon as I find the perfect word to express my gratitude, even if I have to invent a perfect word, I'm going to say it over and over and over again.  Until then, I'll just keep expressing my gratitude in every way I possibly can, because I am forever grateful.  Thank you.  Thank you.  Thank you.  AMEN.

Journal entry by Corrine O'Day Hanan

Today Scott and I arrived in Rochester, MN.  So many events and plans and assistance went into getting me here, and, now, all of a sudden, it's time to begin.

We arrived late morning and had the mandatory tour at the Gift of Life Transplant House.  It's an absolutely lovely home-away-from-home.  There are two houses, each with around 40 bedrooms.  We are in the older home, and it's full of nooks and crannies and inviting spaces to relax in.  It took a while to get unloaded and to get everything put up, but here we are, six o'clock at night, all organized and ready to begin this adventure called "bone marrow transplant."  

Tomorrow I get a day of rest, because it's July 4th.  Scott and I might even go to a movie.  It's my last day to do anything for a WHILE, because I have 27 appointments scheduled from July 5th through the 13th.  It's an insane schedule, but worth every second, because it's everything I need to prepare me for transplant.  I don't have a new date yet, but if everything stays on track it will be sometime in the latter part of July.  I'm determined to stay positive for the long haul, even if the transplant doesn't happen in July.

While I've been moving toward this phase of my journey for a while, today it finally feels like the last leg of it is about to begin.  That's really not accurate, though.  There are so many steps and, as Dr. Shah says, "moving parts," that each day it's another day to begin.  Just like in my walk with Christ, each new day is a new beginning.  They all fit together, no matter what I label them.  

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Journal entry by Corrine O'Day Hanan

This has been a crazy week, and I am exhausted and thankful it's the weekend.  I took it fairly easy Wednesday, July 4th, as planned, but things took off like a rocket on Thursday. 

My day started off with a nurse visit with Savannah, who explained the gist of what was coming up in the next week.  Then I had my bone marrow biopsy, a chest x-ray and chest CT, my pulmonary function tests, and my dental exam (yes, I got clearance, yay).  I finished out my day with an educational class on the basics of stem cell transplant and a tour of the outpatient bone marrow transplant unit.  

Then, on Friday, I started out with a renal clearance exam which took two and a half hours, then did the ECG (which was perfect), my first (of a few) visits with the social worker, and then a lllloooooonnnnnnggggg echocardiogram.  The tech explained they take LOTS of measurements, because the doctors will check my heart regularly throughout the transplant process to catch changes, if any, as early as possible.

Friday night Scott and I went out to eat at a local Chinese buffet, which was absolutely terrific.  It had everything!  Even a sushi bar.  I don't eat sushi, so I didn't try the sushi bar, but I was fascinated with it nonetheless.  I had my usual sesame chicken, but I also tried some Japanese chicken (pretty good) and some jalapeno chicken (too hot! but Scott liked it).  If you are ever in Rochester, MN, the place is called Kingdom Buffet, and we'll definitely be going there again.

Now it's Saturday, and I didn't get up until after NOON!  I was so tired!  I think I could have slept until 2 or 3, but I made myself get up.  We had sent in an online order for Sam's to get a few things (believe me, people, when I say a "few."  It was six items, a record for us), and we needed to pick that up.  After we got back, I put our items up, had a quick snack, and then did a little housekeeping.  Ran the vacuum; cleaned the bathroom with all my Melaleuca stuff I brought from home.  It smells so fresh and clean in our little area now.  All of a sudden it's 6:00 p.m. It's like Time is running the vacuum over all my minutes, sucking them up into eternity.  They seem to go by three times as fast right now.

One thing I have enjoyed about being here is that we could only bring so much stuff; we can only fit so much stuff into our living quarters.  It forces me to keep it simple.  Keeping it simple keeps it manageable for me.  I can focus my attention on the important stuff -- getting enough rest, eating right, getting some exercise, etc.  Yesterday, after I finished my echocardiogram, I came out of the Gonda Building and saw how beautiful it was outside.  Lots of sunshine but not too hot, a slow breeze--it was wonderful.  So I thought to myself, "HA.  I have hemoglobin and I have neutrophils.  I am WALKING back to the transplant house!"  And so I did.  It was great.  I'm sure that contributed to my ability to sleep for so many hours last night.  And today I'm not too sore from walking.  In fact, the only place on my body which is a tad sore is where I had my bone marrow biopsy.  It will take a few days for the soreness to ease up there.  I will accept the soreness -- my donor got a week's worth of sore on my behalf and I am sure I am not nearly as sore as she is.

I have read that the most important thing I can do for myself after my transplant is to walk.  Even if it's only a few minutes, or a few steps at a time, walking will help my recovery.  For example, simply laying in bed will make me prone to pneumonia, plus it will weaken my muscles.  Getting up, moving around, and just walking will help me a lot!  So I'm working on doing that now, getting my mind set on what I need to do for myself. 

I suppose I feel myself mentally and physically preparing for the transplant.  Buying the things I will need afterward, organizing now to make it easier later, adding a few extra things to my daily physical routine, being mindful of my physical limitations.  I would have made a good Girl Scout, I think. My friend Shary in St. Louis says I'm pretty organized.  She's quite smart, so I think she could be right.  So onward I go -- this is me, getting PREPARED.

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Journal entry by Corrine O'Day Hanan

I often don't "name" my posts until after I have written them, because I generally don't decide ahead of time what I'm going to say.  But, if I DID name them ahead of time, I would call today's post "Information Overload."

Today we met with the BMT nurse coordinator for an hour and a half.  The entire time was essentially information.  We watched a video on informed consent.  We talked about the process.  We talked about the medications I will be put on for the first few months -- medication that every BMT patient gets put on, plus potential medication I would be put on for various side effects.  We talked about the team approach Mayo uses (which I love and wish every hospital would adopt).  I was lectured quite seriously about how important it is to bring every single symptom, no matter how small, to the attention of the BMT team, immediately.  The sooner we can treat side effects, the better the outcome.  Therefore, the typical approach of "I'm okay, it's fine" is not a very healthy approach as a BMT patient.  

I did experience a bit of confusion about my donor, though.  I was told it was a "she."  Today I was told it was a 27-year old male from Germany.  So now I don't know!  The RN coordinator said sometimes a donor doesn't work out because of various reasons, so maybe he was a backup coordinator.  Anyhoo.  He has the same blood type as I do, but that's about all I know.  :)

We had a long meeting with my transplant doc, Dr. Shah, too.  He said he was going to play Debbie Downer today.  Obviously today was informed consent overload today, because he spent most of HIS time talking about all the problems with this particular transplant.  

One item of good news was that my blast count is down to 1% (it was 5% in March), so the chemo did some good.  It will be at least a week before we get my genetics reports -- the cytogenics and p53 mutations status.  He therefore didn't want to begin the induction chemo this week; he wants to wait and see what my numbers look like.  As of now, I'm tentatively scheduled to begin induction on July 21st, get admitted on the 25th, and receive the transplant as an inpatient on the 27th.

A second item of good news is that I received clearance from heart, lungs, kidneys, dental, and psychiatry.  My heart and lungs are compromised from prior chemo and conditions, but they passed the tests.

The bad news was that my HCT-CI (co-morbidity index) has climbed to a 10!  It was only at a 7 in March, so I was within range of Mayo's transplant requirements.  Dr. Shah has never had a 10 before, although he has assisted on them.  He has to really make my case with the transplant committee, but he can't say for sure Mayo will sign off on it.  He did commit to making my case.  In fact, he said he would just tell me "no" if he didn't intend to campaign for me in committee.  He did say if Mayo declined, he would work with MD Anderson to take me on.  He said MD Anderson would be the only facility in the country who could "handle" my case if Mayo can't do it.  That's rather unsettling, to say the least.  If I felt deathly ill, I could understand it better, but since I don't feel all that sick (only tired mostly) it doesn't seem real that I'm very, very sick!  

I'm supposed to spend this next week deciding if I'm *sure* I want a transplant.  I have to decide if I want to take what time I have left, utilize some maintenance chemo, and have good quality time with my family (basically a matter of months), or take the plunge and undergo a transplant with a very low probability of survival.  But I see it as what I've said all along:  trading a zero percent chance of survival with a 15-20% chance.  

Dr. Shah also spent a fair amount of time trying to make me understand what a difficult process a BMT is, just in general.  That part is foreign to me.  I don't have anything to compare it to.  He has the advantage of having seen hundreds of patients go through the process, and he knows the steps, and the complications, and the various responses.  Me, I just know what I read and what others have shared with me.  I think I just have to be willing to fight hard to stay alive, and to accept that it will come at some expense emotionally and physically.  However, I think God is equipping me spiritually to handle those things, and I have deep faith in God.

In the next few days, I have many educational appointments.  Tomorrow is nutrition.  I also have to do a consult with infectious disease.  The fact that I got two infections while neutropenic cost me another point on the co-morbidity index, sheesh!  I looked at being neutropenic for five whole weeks as transplant practice, but Dr. Shah says not only will I have no neutrophils, I will have no lymphocytes or monocytes or any other white cell.  Anyway, I still have a couple of spots in my lungs that need to be evaluated, and he says they will probably keep infectious disease on the team due to my history; therefore, I need to go do a consult.  Next week I will have a meeting with a pharmacist who will explain about all the drugs I'm about to start taking.  When I start my chemo, I have to start my precautions, so I have to buy special soap to wash with and get my N95 filter mask and start all the wiping down everything with disinfectant, etc.  So, while I "technically" have another week to get ready to start all this, it's not a totally blank week either.  I'm also planning to shop tomorrow or Thursday, so I can cook a few meals before I go into hibernate mode.

I can't imagine deciding, in this next week, to forego the transplant.  In my thinking, my mind is made up already.  However, I committed to think about it.  I've researched all I need to -- that's my forte -- but I will continue to pray and consider and listen for God's voice.  And while I am committing to go wherever God wants me to be, I am hoping things will work out for me to stay right here at the Mayo and receive my transplant here.  I feel safe here, I suppose.  I trust the transplant team, I trust Dr. Shah.  I don't want to start over with a whole new team, as in MD Anderson.  I like the transplant house, I'm enjoying the people I'm meeting here.  I feel ready to move forward.  AMEN!!

Journal entry by Corrine O'Day Hanan

I have always anticipated that I would begin writing more frequently as this process began moving more quickly, and I find that I was correct.  I have a goal to really document this process, so not only am I meeting my own goal by writing more, I am creating something I can look back on and say, wow.  I did this!

Today I got the results of my liver biopsy, which shows early (Stage 1) fibrosis.  This is a condition which progresses over time into cirrhosis if not corrected.  I have non-alcoholic fatty liver disease, which I just found out in March when I was here at the Mayo before.  It's a result of my diabetes and weight mostly.  Anyway, Dr. Shah said transplant would be discouraged if the liver biopsy came back with fibrosis, but he didn't really quantify the amount of fibrosis which would be too much to proceed.  I have been scheduled with the liver specialist tomorrow, and I hope to find out more then.

I had a bit of fun at my lab appointment this morning.  I had to be at the clinic at 7:15 a.m. for "scheduled specimen pickup."  Of course my paperwork didn't tell me what kind of specimen I would be collecting.  So I get back in the cubicle, and the tech pulls out the wonderful stool sample kit.  Oh yes, one of my very favorites.  I mean, who doesn't love collecting her own stool so other people can run tests on it?  In my attempt to keep humor in my day, I ooh'd and aah'd over the pretty green container, and exhibited great enthusiasm at the new tool with which I can scoop my sample from the amazing "hat" which will fasten to the toilet seat.  We both had a good laugh.  And then, at the end of the appointment, she asked me if I had any questions or comments.  I told her I didn't have any questions and that, for both our sakes, I would keep my comments to myself.  Hahahahaha.  Later in the day I got sent back to the lab for seven more vials of blood drawn and another kit to do a urine sample as well.  And this afternoon I attended the first nutrition class, where we also had quite the entertaining discussion about poo and the various forms it will present itself during our chemotherapy and subsequent transplant steps.  Such fun we are having here in sunny Minnesota.

I also had the appointment with the infectious disease department today.  (Hence the seven vials of blood mentioned earlier.)  I have a couple of new areas of suspicion on my chest CT, and the primary rule-out is fungal, since I had a fungal spot there in March (aspergillus terreus).  So I have to start taking this anti-fungal with a name I can't pronounce, much less spell at the moment.  But I do know my insurance co-pay for this medication is $2,000 a month!  Yawh (practicing my Minnesota accent), right!  The clinic says it's a drug most of their patients can't afford, so we'll be filling out a patient assistance from from Merck.  The total price of the drug is about $7,000 a month, and I'll be on it for at least three months post-transplant.  The new thing I learned today about fungal infections is that they are hard to treat, and if one goes into transplant with an active fungal infection, VERY BAD things can happen.  These include being put on a ventilator and needing surgery to have part of a lung removed because the fungal infection won't clear up with no immune system.  Very exciting times.  I don't think I need partial lung removal to feel like I'm getting the full transplant experience.

At one point in the day, I had to head into the Hilton building.  I was walking along down in the subway level, when I register this horde of people moving toward me.  It was insane.  People walking, people being pushed in wheelchairs, in full width of the hall.  My first thought was, wow, they must have just gotten out of a conference meeting or something.  But then, as my mind was processing the individuals in this group, it was obvious they were not professionals coming out of a meeting, they were clearly patients.  So I was about to walk up to someone and jokingly say, "what, are we evacuating?" when hospital personnel announced we were evacuating.  Apparently a fire alarm went off and it was serious enough they had to clear the area until it could be determined there was no threat.  Which there wasn't.  But it sure made the lab become more backed up!  The cool thing was I had taken my laptop today because I had a long period between appointments and I had planned to find a quiet corner to curl up and journal.  So today it was not a quiet spot--it was crowded and loud--but I worked on my pros and cons for transplant.  

I am working hard to stay true to God's word and accept His promises.  It's very hard and somewhat stressful to be in limbo with the transplant.  Am I getting one here at the Mayo or not?  Will I have to travel to Houston?  What if MD Anderson says no, too?  Then, of course, I remind myself I am getting WAY ahead of myself and I just need to focus on right here, right now, today.  And today was a good day.  I had fun today.  I took a couple of groaner situations and made light of them and had some good laughs.  God is good.  AMEN!

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Journal entry by Corrine O'Day Hanan

Time to get more consistent with my blog again.  Once I get off-track, it's hard to get started again.

Spent another 8 days in the hospital with pneumonia again this month.  I have been home about 8 days, and have been fighting the cough again since just a few days after I got out.  Last night I aspirated and have been coughing a LOT today, but it actually doesn't feel like it's getting worse just yet.

I am headed back to the Mayo the 17th of June.  We're trying to organize a visit with ENT this time.  I am going to see a local ENT on June 3rd, and we hope to be able to culture my sinuses.  This last time I was sick, the CT sinus scan showed new holes in my sinuses which apparently are not helping my situation.  The thought is that I'm harboring some odd bacterium in my system and, if we could just figure out what it is, we need to find the drug that will cure it.

Life post-transplant is certainly a daily adventure.  I spend a lot of time in prayer to God talking to Him about trusting His timing, trusting His process, trusting His plans for me.  Many times this is because I feel like I'm not catching on very fast, hahahaha!  I'm sure God would be so pleased if he didn't have to teach me the same concept numerous times.

My children get out of school for the summer tomorrow, and I'm really looking forward to spending most of the summer with them.  I should not have to be at the Mayo for very much of the time.  I can't say I'm looking forward to the inevitable arguing and constant complaints about how "bored" they are.  I am looking forward to "teaching" them the fine points of how to clean a house properly!  Clarissa and Alec are both old enough to learn how to use the riding mowers and can start taking care of the lawn.

I have been thinking about spending one of my blog entries talking about GVHD, for the people who read this in hopes of finding answers about the process.  I think I will do that tomorrow.  My GVHD is mild, but I have it in my eyes, mouth, lungs, skin, muscles, gut, and probably liver.  Right now the muscles and the skin are the most problematic.  It's time to spend some time helping others with this part of the journey.

We have had a week of bad weather with tornado-producing storms.  Tonight was no exception.  I have been praying to God for His protection over our home and family, and tonight was no exception, either.  I pray that your families are safe, too.  In Jesus' name, AMEN.
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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.