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Journal entry by Corrine O'Day Hanan

Finished chemo, woo hoo! I was at the clinic seven hours today.  One hour for the CT scan, four hours for chemo, and two hours of down time.  I received three different pre-infusion drugs, which totally controlled any nausea.  I had a tiny bit of nausea partway through, but it passed and I haven't had any since.  The diarrhea, we won't talk about in polite company, except to say I am experiencing some.

The CT scan showed my lungs are continuing to improve.  They are not 100% perfect yet, but good enough for transplant, and I will be watched carefully.  All my lab work is very good.  Blood counts, electrolytes, liver enzymes, kidney function, all perfect going into transplant.

Tomorrow is a day of rest.  I thought I was going to get to kick back all day, but apparently Mayo protocol includes being seen by the health team every day once chemo starts, so I will have to go in and have blood drawn, see the PA, and just generally check in.  We also have our final education class before the transplant.  Which.  By. the. way.  Is Friday.  And I have to be there at 5:30 a.m.!  Yikes.  Have I ever mentioned I have never been up at 5:30 a.m. since I got sick?  And Jeanne and Mary and Paul, you don't get to hold that against me until I am WELL and still not getting up early!  Har har har.

It was another beautiful day in Minnesota today.  A brief, heavy rain fell around 5:00, which cooled things down from the 80s--where we were--to the 70s where we are now.

Two more couples went home today, which is always a victory.  Another couple is still struggling, with wife in ICU and husband at her bedside.  Baby Lily, with her heart transplant, is hanging on.  It's mid-week, and it FEELS like mid-week, like we're all here working a little harder than usual to get past the mid-week hump.

Today, as I prepared for my wicked melphalan (I use the term wicked because it's been described as wicked intense), Scott and I prayed.  I ate ice chips.  I ate them plain.  I ate them smothered in Kool Aid.  I ate two popsicles.  I had Third Day's Lead Me Back CD playing.  And I sang and danced all the way through it.  What was especially fitting, though, was as my melphalan was dripping its last drops of medicine into my vein, Third Day's "Soul on Fire" came on and finished off the session with a rousing live version.

I am tired tonight, in part because my blood sugar is in the 400s.  It's been running high this week, partly because the doctors took me OFF some of my diabetic meds because they interfere with scans.  I'm in the queue to see the endocrinologist, but an appointment hasn't been set up yet, and they haven't given me insulin doses.  So I've been running high 200s fasting and high 300s when I eat.  Tonight, however, I peaked in the 400s.  So I'm tired and a tad headachy and a little blah.  I'm going to go to bed at a reasonable hour, and have a great night's rest, and will be singing and praising God in my sleep that I'm feeling as great as I do despite the very heavy chemo dose I received today.  To you, Oh God, I give all the praise and the glory, in Jesus' name, AMEN!!

Journal entry by Corrine O'Day Hanan

Wow, getting closer to Day Zero!  (Friday)  Scott pointed out today that my Day Zero is his mom's birthday.  I thought that was interesting, given that I took care of her for almost four years.  Maybe she's keeping an eye on me from heaven.

This morning I had to be at Station 9-4 at 7:45 a.m. for my Tacrolimus dose.  Hopefully that's the one and only time, as the insurance got straightened out this afternoon.  Then I didn't have another appointment until 10:00, which was the breathing treatment to spread this medicine Pentamidine into my lungs to prevent infection during the transplant recovery period.  Oh, my, it was nasty stuff.  I had to keep repeating to myself, "no grumbling or complaining, no grumbling or complaining," as it was rather stout.  Kind of like inhaling sewer water, ugh.  'Nuff said about that.

The treatment took about an hour and then I had another two hours until my next appointment, which was today's chemo.  My numbers are still looking really good!  Apparently, though, I misunderstood when my counts were going to tank.  I thought it was Days 3-5 of chemo, but it's days 3 to 5 after tomorrow's chemo.  Tomorrow is the icky chemo called melphalan.  The protocol is to eat lots of ice chips so it will hopefully prevent mucositis (sores in the mouth).  Thursday is a day of "rest," and then Friday is transplant.

Transplant, that is, provided everything turns out okay in the CT scan of my chest tomorrow.  We're still tracking a couple of small areas in the lungs which were thought to be the resolving pneumonia, but we have to be sure they are cleared up before we launch into transplant.  So I have lab draws, a CT scan, chemo, and an appointment with the infectious disease doc tomorrow, before my day of "rest."    I use the term loosely because I think resting will be hard to get because I will be so excited!

It was so gorgeous today I almost walked to the clinic.  However, the shuttle pulled up right when I was trying to make up my mind, so I rode the shuttle.  I am glad I did, though, because I got a lot of walking around exercise. . . including the time I left my mask on the 9th floor and didn't remember I didn't have it until I was on the subway level in the next building and had to go back for it . . . .   

It feels almost strange to be thinking about transplant on Friday, when I'm actually feeling pretty normal right now!  There's a little part of me saying, "well, what if we waited on the transplant?"  I know that's not logical, so I don't live there or anything, but one can engage in wishful thinking momentarily and not fall off the path.  I know God is in charge.  That's all I really need to know.

Missing my kids tonight, but I am happy they are doing well.  Tonight I spoke with a good friend from Oklahoma, who's been having a rough time.  It was good to hear her voice, and I would ask any of my praying readers to pray for my friend, Jayme.

I also had the luxury of another fun-filled phone call with my friend, Sarah, in Oklahoma.  She had sent me this wonderful gift, and I was commenting at how WELL she had wrapped it.  As in, I could hardly open it because it was so well-wrapped!  As in, she had taped every single corner!  We both got to laughing pretty hard.  I love to laugh.

And, not to brag or anything, but I can now pronounce at least half my medication, and so far I'm taking it properly.  Scott made up a MAR (medical people will know what this is; I do not know what it stands for) and I check off everything when I take it. My blood sugar is running ridiculously high, so we're going to have to tweak my diabetic meds and probably start the insulin.  One of the meds is very hard on diabetics, so, in my defense, it's not totally my adherence to Dr. Shah's "eat at will" diet that is the problem.

I'm very excited to be completing chemo tomorrow!  I'm excited to be getting ready for transplant Friday!  I'm excited to be alive!  In Jesus' name, AMEN!!

Journal entry by Corrine O'Day Hanan

Day 3 of chemo in the books.  Am at Day -4.  Grateful to be intact with no side effects yet.  Tomorrow is a long day, so it's going to be a short journal entry tonight.

I have to start taking the immunosuppressant Tacrolimus tomorrow, only my insurance hasn't gone through yet.  Therefore, I have to go in early to receive IV Tacrolimus.  Then at 10:00 I have this lung treatment which will coat my lungs with some sort of medicine to assist my lungs not develop some serious infections after transplant.  Then I have day 4 of chemo.  On Day 5 of chemo I get the really nasty stuff, so I appreciate not getting a ton of side effects with this less-potent stuff right now.

Friends rallied together and got everything situated so Maggie could make her cheer meeting tonight.  I can't wait to see her in her full outfit, ready to go!  Kyan and Maggie will have football games back to back this fall (she's in 3rd; he's in 4th).  She is excited that she gets to stay through two games.  :)  Gotta love the kids; their enthusiasm is infectious.

I didn't get a chance for Bible study today, and I actually missed it!  Who would have ever thought *I* would *miss* my chance to read the Bible.  The day was broken up into so many small moving parts that I didn't get much alone time.

However, part of my time was spent with a new friend named Deb, who is on one of my FB lists for transplant patients.  She quickly became one of my favorites with her posts, and we started communicating via FB Messenger.  She had her transplant here at the Mayo also, and so she's a wealth of information and support!  We had a great first visit, sitting out on the front porch, rocking away in the big GOL (Gift of Life) rockers.  Her SO, Doug, joined us for a bit, and we had a fun conversation.  Somehow we talked about everything from illness to chemo to transplant to kids to the Sami in Norway.  Hahahahaha.  

Tomorrow, even though it's busy, I hope I can spend some time playing the piano.  I have this new Third Day music book that's been sitting on my shelf a few days now!  I looked up and then downloaded the owner manual for the electronic piano that's here, so I can figure out the chords and accompanying rhythms.  Just can't wait to try them out.

I also was able to talk to my daughter Bethany today.  Such a treat.  She's like my child soulmate.  We're both hippies at heart, and I live vicariously through her adventures at times.  Her kids (my grandkids) were telling me stories on the phone and "showing" me how they were hopping on one foot.  We were not on video chat, by the way.  So I'm listening to these two youngsters tell me things, chiming in at the same time sometimes, and then hopping up and down together; it was positively delightful.  And Mason wrote me a song!  

Well, as I said, short journal entry tonight.  I pray for my friends and family back home, for my NY family who is having some struggles, including a recent husband loss for Stephanie, and my newfound friends here in Rochester.  The determination and bravery I see every day is heartwarming and encouraging.  Thank you, God, for bringing me here, and for placing the right people in my path.  I give you all the praise and glory!  AMEN!!

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Journal entry by Corrine O'Day Hanan

Day 2 of induction chemo in the books.  So far, so good.  They have been giving me anti-nausea medication before the infusion, so I haven't had any nausea at all.  I've been told days 3-5 are when it will start hitting me.  

Things have been quiet and calm up here today.  I've been sleepy! So it feels like I haven't done anything.  The house back home is a tad chaotic, but Mary says it's getting better day by day.  I can only imagine how hard this is on the folks back home, and I am very grateful to them.

I am now minus 5 days from transplant.  It's getting here so fast, now that I've started chemo!  I really, really, really have to keep focused on the one day at a time mentality right now, because the number of things I have to remember to do every day seems to be getting larger every day, and it seems impossible to be able to keep it up for months.  But if I focus just on what I need to do today, it's not so bad.

I am touched daily by the lives of the people around me at the transplant house.  There seems to be just as many husbands taking care of wives as there are wives taking care of husbands.  (There are also children taking care of parents, but, surprisingly, I haven't seen that nearly as much as the couples.)  Each couple seems committed to the routine here.  We have been taught ways to cook and clean up after ourselves that keep the environment as clean as possible.  We each do our part, and everything runs smoothly.  I watch the small pats on the back, the sweet hugs around the waist, the tender smoothing back of loose hair on a loved one's forehead.  All these people in this place, where I am, at this moment in time, are fighting a disease that has necessitated a transplant.  I notice the adjustments we have all made in such a short amount of time, and I marvel at how quickly the overwhelming and odd has settled itself into our daily routines.  I was really dreading wearing the mask, but was determined to wear it because I need to.  Well, here I am, killing it!  I LOVE coming back into my room where I can take it off, but I'm minding less and less each time I have to leave the room with it on.

Scott is adjusting to this new world, too.  He has made dinner last night and tonight, and done the majority of the cleanup afterward.  He is reminding me of medication, and other issues.  For example, after we use the toilet, we are supposed to put the lid down and flush twice.  I have learned it's much easier to rinse my mouth out with warm water before I begin using the tooth sponge to clean my mouth (Scott's suggestion).  He encourages me to rest, and is very sweet to keep the room quiet while I do.

We had a funny thing happen at dinner tonight.  Scott was introducing me to a man who is getting his autologous transplant in the morning.  I heard him say, "tomorrow is his daisy row."  I was confused.  What?  "Hmm?"  "His daisy row."  I still didn't understand, but I smiled at the man and hopefully conveyed a gesture of support.  When I turned my attention back to Scott, he said, "what did you think I said?"  I said, "that tomorrow is his daisy row."  Scott rolled his eyes, smiled.  "It's his DAY ZERO.  Transplant day."  I giggled.  Daisy row, Day zero, I can see how I confused that, but it was pretty funny.  They bring two totally different things to mind!  He said I had the blankest look on my face as he's ever seen.   But of course that reminds me that MY day zero is Friday, woo hoo!

I remember starting out my blog with "A New Normal" or something to that effect.  Our new normal is becoming more normal each day.  I praise God for that.  AMEN!

Journal entry by Corrine O'Day Hanan

I got my two-lumen Hickman central line placed today.  I was asked to report at 10:59 a.m., but didn't get taken back to surgery until 2:07 p.m.  Was in surgery an hour and a half, then in recovery an hour, then in the room another however long before I came back to the transplant house.  Even then, I was still feeling the effects of the happy drugs and decided it was NOT a good time to journal.  So I ate (after almost 24 hours!) and went to bed.

I woke up at 2:00 a.m. (so technically it is the 21st) with Third Day's lyrics to Father of Light running through my head:  "You alone deserve the honor and the glory, You alone deserve all our praise, so we worship You and You alone.  Great and marvelous are Your deeds, O Lord God Almighty, Just and true are Your ways, so we praise You and You alone.  Father of truth, Father of grace, be with us now through this place."  I felt led to get up and journal.

While I have been a strong believer in God my whole life, I have only considered myself a true and faithful Christian for the last few years.  There was a time in my relationship with Him that I made a commitment to go ALL IN.  Prior to this time, one of my fears of committing completely to God was that He would ask me to do something hard, like leave my children and go to Ethiopia to be a missionary.  I had seen all the inspirational messages, like God doesn't call the qualified, He qualifies the chosen; God will never give me more than He gives me the tools to handle what He has given me; things like that.  Yet my fear persisted, with my feeling like I could never be a "good" Christian if I feared being asked to do something out of my comfort zone.  I mean, I knew the story of Abraham being asked to sacrifice Isaac!

Since I went ALL IN with God, I have been particularly enthralled with modern-day stories of faith and perseverance and testimonies of God.  I love the stories in which small children speak of talking to Jesus, like Colton Burpee.  And Akiane Kramarik, whom God taught to paint and who painted the most amazing picture of Jesus I have seen to this day.  I am transfixed by the stories which leave no other conclusion but that God is real, that there is no other explanation for whatever just happened.

As I am walking through this journey with Him now, I have realized I am willing to do whatever God asks of me as I heal.  Years ago, I was afraid of being asked to do something hard.  I was afraid of leaving my children.  I was afraid of doing something out of my comfort zone because I hadn't learned that there is nothing out of my comfort zone if God is there. Today, I am humbled by the thought of doing something to honor God's glory and am unafraid.  I have left my children and have traveled to a place to receive healing.  While mainstream will be tempted to believe modern medicine painted the canvas of my cure, it will be God's hand on the brush and choosing the paints.  There will be no other choice but to see God's great and marvelous deeds in my life.  And no matter what happens in my physical body, there will be no denying God's presence.  To God I give all the glory and all the praise.  AMEN!

Journal entry by Corrine O'Day Hanan

Today was another very long day.  I had seven appointments, but they were spread out and entailed a lot of waiting!  It was okay, though, as I had lots of time to perfect some of my favorite tormenting techniques on Scott.  We had fun, mostly.

I'm so excited to report all the new drugs I will begin taking involve names I can almost pronounce.  That's my achievement for today!  There's the Noxafil, the anti-fungal; Ursodiol, aka "Drano of the Liver," self-explanatory; penicillin and levaquin for prevention of bacterial infections; I will continue on the anti-viral Valtrex; an immuno-suppression drug called Tacrolimus, which I will be on for a very long time; an infection-preventing mouthwash; special soap for my face; special lotion for the skin; special sponges to clean my teeth; and then the routine Compazine and/or Zofran for nausea.  We shall take a quiz tomorrow and see how many of these I recall.  NOT!  The pharmacist said to buy the biggest pill divider-upper I could find because I will need it.  These are the just the STARTING drugs, and others will be added as we go along!

So tomorrow I have to report at the precise time of 10:59 a.m. for surgical placement of my Hickman line.  Yes, 10:59 a.m.  Not 11:00 a.m.?!  I cannot wait to get there tomorrow and ask about the very odd time I was told to report.  Mayo may be great, but to time its surgeries down to the minute?  I don't think so.  :)

It was so late when we finished at the Mayo that the shuttles had stopped running for the day and we had to call and wait for a cab, which took about 45 minutes.  Got back to the transplant house and a local church was providing supper tonight, so we didn't have to cook.  They had sloppy joe sandwiches, chips, veggies, fruit, and baked beans.  And they cleaned up afterwards, so we got a total free pass tonight.  We definitely appreciate the small things, which are often big to us, these days.

Dr. Shah used the words, "best possible spot to be in" right now, as it regards to transplant.  All the tests coming back like they have is amazing, of course.  And then, had lab work today, and my numbers are almost completely normal!!  My red cells a tad under, and one of the liver enzymes a tad over.  However, hemoglobin, hematocrit, white cells, platelets, all that jazz, completely within normal limits.  I've been bragging all day about my counts.  All the glory to God, of course, because I have no control over what my body does on the inside.  (Although, I do love the reason to eat steak as extra protein, so my red cells do better.)

My brother George gifted me a Sam's run, which I totally appreciate.  I got such fun things, like adult diapers and adult wipes and Q-tips and paper towels (because I can't dry my hands with the same cloth twice) and hard candy to suck on during chemo.  I am writing all this and laughing, because, well, what a list!!  My bathroom shelf already looks like a hospital shelf -- alcohol wipes and hand sanitizer and alcohol and hydrogen peroxide and hospital disinfecting wipes and those blue hospital gloves and saline kits and and and. . . .  We also have a doctor kit with the blood pressure cuff, pulse oximeter, stethoscope, otoscope, thermometers, pill halvers, good grief. 

We have a 10-month baby girl coming to the house in a couple of weeks.  Her name is Lily and she just had a heart transplant Tuesday because of heart damage she got from having RSV.  Scary!  Anyway, children are not allowed at the house unless they are patients, so we don't see children around here much.  Well, the family got assigned the room right next to us.  The way I take it, God is giving me a baby to ooh and aah over while I'm here!  So I told the parents, if they needed anything, we were very well stocked right next door.  We have alcohol wipes and hand sanitizer and . . . . Hahahahahaha.

Obviously I'm in a really good mood tonight.  I'm tired, but so happy.  There's that little, tiny, persistent part of my brain which does remind me how much the odds are against me.  Something like (repeating what the doctors say), "you're probably going to die, but you might live."  That translates into, I might die, but I'm probably going to live!  Why?  Because God is God.  No one knows but God.  I trust and have faith in God and His plan for me.  In my heart, God has plans for me.  Those plans involve a successful transplant.  I keep claiming how wonderful I'm going to feel with all brand-new blood -- and the blood of a youngster at that -- inside this body!  

So, that's about all my cancer-related news for tonight.  It's mostly cancer-related news because that's captured my entire day.  I miss my family, and soon I will see them.  Happy and healthy and ALIVE!  AMEN!!

Journal entry by Corrine O'Day Hanan

Dr. Shah called before noon this morning to let me know the committee had approved me for transplant.  I was so excited, and I've stayed pretty excited all day!  Every now and then I have this gigantic explosion of fear rocking my brain, almost as if I am yelling, what are you doing?  But it doesn't last long, and I just keep on praising God.  Getting this transplant is extremely risky and could cost my life, but so can not getting the transplant, driving a car or flying on a plane or getting bitten by a snake.  God is the only one who knows when my time will come.

Tomorrow I now have only seven appointments instead of 8, and I don't have to be there at 7:45 a.m.!  The good news just keeps getting better.  :)  Friday I have the procedure to get my Hickman line put in.  Saturday I start chemo.  Next Wednesday I go in-patient.  Next Friday:  TRANSPLANT!!

I am completely attached to the notion I can do this only one day at a time.  There are just so many things that could or could not go wrong that I would go crazy if I tried to plan for all of them.  There are those few who go through this experience with NO major problems, so I'll just put in my request with the man upstairs to be one of those people.  If He decides I need a more detailed experience with transplant, I'm all in, no matter what.

Someone asked me to explain the significant of the HCT-CI score earlier, since mine is so high at 10.  Basically, the higher the score, the higher the risk of mortality during the process.  It helps the doctors make decisions, but every person is different.  I am in the position of having a number so high there are not enough cases out there to look at.  :)  But, since when have I paid much attention to the odds?  Well, not generally.  My own doctor has never done a transplant on someone with a 10.  He's done an eight, but that's the highest.  (8 being Mayo's "normal" cutoff.)

Scott and I went out to eat, my last dining out experience for a while.  I opted for steak again to keep those red cells growing!  I'm trying to keep myself awake until 8:00 p.m. and then I'm going to bed.  If I go to bed too early, I'm worried I'd be up too many hours before it would be time to leave.  I'm praising God for a great night's sleep and a blissful awakening tomorrow right before TRANSPLANT BLAST OFF!  Hahahahaha.

I should have time tomorrow to help one last time with chores before it's hands off until engraftment.  Engraftment is when the donor cells start growing into red cells and white cells and platelets, and I officially have blood with someone else's DNA in it circulating in my blood stream.  What a strange idea, hmm?  I wonder if any criminally-minded transplant patients ever committed a crime right before transplant so the DNA wouldn't match up.  Hahahaha.  I'm just kidding.  The lawyer brain which resides in my head can think of about half a dozen reasons why that wouldn't work, all without really even thinking it through.

I also am going to make time in the next week or so to upload some photos of the lovely transplant house I am staying at.  This place is so inviting, so gracious, so peaceful, so wonderful, that it's easy to forget why I'm even here.  Today, after I got the call from Dr. Shah, I took my sewing machine upstairs to the sewing room.  It's been kind of my "marker" of sorts.  I didn't want to unpack my sewing stuff until I was sure that I was going to have my transplant here.  Everything else I unpacked I "needed" in my day-to-day life; the sewing stuff is extra that I brought to keep me occupied when I'm feeling better but still can't do much.  I made a deal with myself, too:  If I go this entire time and never once feel like sewing anything, I am not going to feel like a failure or feel guilty.  I will simply load it all up and take it back home for when I do feel like sewing.  

My list of things to do while I'm up here having my transplant is pretty comprehensive, actually:  lots of Bible study, play my worship music on the piano, sew, learn to knit, learn how to play bridge, learn how to edit videos, make cards for the kids, make the Christmas cards, upgrade my Adobe skills, color in my coloring books (which I've owned for three years and have never colored in), organize all my digital photos, learn a second language, and write a book.  There will be NO shortage of things to do for God's Emerging Mutant Miracle!!

In concluding my entry tonight, I once again express supreme gratitude for all the wonderful people in my life who are doing everything from taking care of my kids and my farm to praying for me to giving my kids rides places to sending me jokes or cool memes or inspirational quotations to to posting pictures for me to hitting "Like" or "Love" on Facebook to brighten my day.  I'm positive that's not the full list, and I will add other things as I think of them, but my entire world is loving on me right now, and I feel the love!!  I love you all, too.  Thank you, God, for all that you have done and for putting these people into my life.  Thank you, for finding Dr. Shah for me.  Thank you for getting me the transplant.  In Jesus' name, AMEN!!

Journal entry by Corrine O'Day Hanan

Well, it's almost decision time!  I'm pretty excited, but I'm nervous, too.  I hate even to admit to the world and God that I'm nervous, but I can't hide my heart from God, so I may as well confess.  I know it will be okay.  I know that, no matter what happens, God has this.  I really want to stay here at Mayo and move forward, but if God says no, I'm prepared to be just as excited about the next step as I was about this one.

It was another beautiful day today.  I needed to go up to the Mayo to get some paperwork done, and when I stepped outside, it was so nice I decided to walk.  I've been getting in some form of physical exercise every day I've been here, to put myself in the best possible physical shape before transplant.  I noticed quite a few people in Minnesota don't make eye contact as they walk.  I went by numerous people, all happy and pleased to be walking, and most of them keep their focus straight ahead.  Most of the people I've met here are very nice, so I wonder why the aloofness when they walk?  Maybe it's their focus time, or "me" time, or "out of the world" time.  I digress.

So I made it to Mayo and got everything situated to get my Advance Directive on file.  I didn't realize what a step it would be.  I am filing a document that tells my medical team what to do in various medical situations, including when to let me proceed to my death.  That's deep!

Then I went by and dropped off my pre-committee meeting letter to Dr. Shah.  He asked me to contemplate my transplant decision this week, and I have.  I also wrote him a letter explaining my decision.  I felt very strongly he should read it before he pleads my case to the committee, so I tracked down his location and made sure the person up front knew he needed it before tomorrow!  He sees patients in the Hematology Dept., but he also sees patients over at Transplant, so that's why I had to "track him down."  I'm not typically a stalker.  :)

I'm also part of this research study on breast cancer due to some of my genetic mutations, and I finished that survey and got it dropped off!  Go, me!

After I got back, I was excited to see that my Third Day Lead Me Back piano book had arrived, so I spent some time learning "Your Words" and "Lead Me Back."  I didn't spend as much time as I would have liked, but it was hot in the room and I was getting sweaty with the earphones on.  Ugh.  More tomorrow, hopefully!  I like that some of the songs in the book are pretty easy, while others are harder, so it gives me different levels to learn.

Scott worked out for the fifth day in a row today, and he also did laundry, so he was sore.  I volunteered to cook dinner since I'm still "healthy."  Lately I've been calling him Oscar because he keeps dropping things.  Tonight he dropped the serving spoon on the floor.  I had to get down on my hands and knees to get  got it cleaned up and then disinfected with our special Gift of Life spray.  And of course me and another lady were teasing him mercilessly.  So then we had ice cream bars for dessert.  He went to get a bite, missed his mouth, and flung the ice cream bar on the floor!  The stunned and horrified look on his face was priceless, because at first he didn't compute what had just happened, and I laughed until I was breathless.  Of course I get down and clean his second mess of the day!  So the lady at the other table, in her continuing teasing, labels his actions as a "condition" -- which just had us laughing more.  Scott asked her if she wanted him to carry some knives for her.  She didn't miss a beat and asked if if he could handle knives in his, um, "condition."  The whole rest of the time we were in the dining room we all kept referring to his "condition."  I literally laughed so hard my stomach hurt.  Scott knew it was all in fun, so he didn't get his feelings hurt or anything.  It was a great dinner hour.

That was really the second time I've laughed like an idiot today.  Earlier I was talking to my dear friend Sarah from Oklahoma, and she had me sputtering from laughing so hard.  You see, she had called the room and it rang four times and the voice mail picked up.  However, I wasn't aware that we could put a voice mail greeting on our phone and had not attempted to do so.  Therefore, Sarah received a message that she had received the voice mail of someone NOT Corrine O'Day Hanan.  She hung up and called back, thinking she had reached a wrong number.  She got the same message, so she hung up a second time.  I was not in the room at the time.  I come back in and Scott says, "The room phone rang while you were gone.  I got up from the chair to go answer it, but I couldn't get to it before it stopped ringing.  So I sat back down.  Then it started ringing again, I got up again, but it again stopped ringing before I could get over there."  In my conversation with Sarah, obviously, I put two and two together, that it was Sarah who had called twice, and why she had done so.  I relayed the entire story to her, but was laughing so hard by the end of my telling it I was sore.  Well, then, Sarah extended the laugh-fest by saying I needed to inform Scott that she was sponsoring a Gift of Life workout program, wherein she would be calling our room four times a day, so that he could get up from his chair four times and not be able to reach the phone, thereby getting in valuable exercise.  It was a lot funnier how she said it than how I'm writing it.  I've been chuckling all evening every time I think about it.

And, even though I was having quite a laughter-filled day, I still made time to read my Bible and pray and contemplate God.  I spent some time with Jesus Calling and the Celebrate Recovery book in addition to reading, because I was somewhat distracted and needed help getting focused.  I find I am still very drawn to Bible passages dealing with faith.

I was actually able to survive the day today without a nap.  I am looking forward to a good night's sleep!  It's almost decision time.  I'm ready to take the next step.  AMEN!

Journal entry by Corrine O'Day Hanan

Today was a nice, lazy day.  I am justifying my laziness by recognizing that I have only until Thursday before the whirlwind starts up again.  I *might* feel a little guilty for being lazy, but mostly I needed the rest.

Today the BMT team is working on getting a new CPAP for me.  Just the other day I realized my CPAP is over six years old and not in very good condition.  The biggest issue is that door to the filter is broken off, exposing the filter to more dust and germs than it would be exposed to if the door was on properly.  My insurance will pay for a new CPAP every five years, so I'm due.  What better time to get a new CPAP than just before I embark on a low-germ life?  Hahahaha.

It was absolutely gorgeous today.  I went outside to call my mom, and I sat down in the grass to chat.  I was absurdly aware of how simply sitting down in the grass will be forbidden for months after my transplant.  That beautiful, lush, green grass grows from soil rich in contaminants very detrimental to the immunocompromised.  I had a few minutes of just enjoying the grass, and the smell of being outside.  It was sunny and breezy and the perfect temperature in the shade.  The ground was cool and comfortable.

Scott made dinner by himself start to finish tonight.  We had breakfast for dinner.  He's building up his tolerance, getting ready to take over next week, when he will have to start cooking for me regularly.  What a hoot!  I'm not used to people cooking for me very often; it will take some getting used to, as strange as that sounds.  He's not used to cooking regularly, period, so we both have lots to learn.

Kyan had his first night of football camp tonight, and I was excited to learn that he thoroughly enjoyed the experience.  He chattered excitedly about all the drills he learned, and how great his stance is, and how the football girl squirted his eye full of water because she accidentally missed his mouth.  It was wonderful to hear him so happy, and it was so hard to keep my voice level and cheerful and excited when inside I was grieving that I am missing this.  I'm not sure I would mind so much if it wasn't his very first football camp, his very first football season.  I'm going to miss his very first football game, his very first football season at that.  As a mom, I'm thrilled that the local community is rallying behind our family to make sure Kyan makes it to practice and to games, etc.  I just have to take a deep breath and remind myself this is not permanent, that this will not be his only season, that I am here at the Mayo so I am around for next season and the one after that.  

I find it rather strange that I get more emotional about missing things that have to do with my children than I do about having the transplant.  Maybe the entire weight of the transplant hasn't hit me yet; I don't feel sad that I'm sick and need one.  I feel sad that I'm going to miss the next four months of my children's lives.  It's amazing how many "deep breaths and reminders" I need lately.  It's okay, though, I know it's okay.  Children are amazingly resilient and by this time next year they will hardly remember this time--I'm pretty sure the amount of time will have no lingering memory at all.  I can remember when they were younger, how everything was either today or last week, whether it was today or six months ago.  Their sense of time was vague and fleeting; if it wasn't happening right now, it was "a long time ago."  Aren't kids great examples of making the most of the moment?  I love it.

The weather here has been nice, but there is some sort of allergen that causes my allergies to act out.  My nose has been running for days, and my chest feels like it does when I'm fluid overloaded.  Normally this particular irritation in my life would have no standing in a journal entry, but right now I'm so hyper-focused on my transplant that my attention goes to, "don't get sick, don't get sick, don't get sick."  It makes me laugh even to write it down.  My counts are good, so I don't really have to worry, but it's one of those little things in my new life as a transplant patient that I'm recognizing.  From this point forward, I don't have the luxury of pooh-pooh'ing minor ailments.  After the transplant, I will have to keep a keen eye on these little irritants.  As my nephew Paul would say, "it's all good."  It is.  It will work out.  I will adjust.  One day I will be journaling and noticing the small things will be so routine I won't spend an entire paragraph admiring my attention to detail.

I hopped around in Bible study this morning.  I wanted to read some more James and head into Romans, but somehow I started in Hebrews and ended up in Jude.  Go figure.  Tomorrow my Third Day piano book will arrive, and I intend to begin learning how to play "Your Words."  

I'm heading to bed early tonight in the hopes I rest better tonight than I did last night.  I have this recurring dream which has come to me for years.  In the dream, I have a small apartment in Muskogee, which I have kept on the side for a long time.  In my dreams, I need a place to go.  I don't go there very often, and the recurring theme is generally that I forget I have the apartment and forget to pay the rent, or can't remember if I've paid the rent.  A prevailing feeling in the dreams is that I'm going to lose the apartment as a result.  Last night I had the dream, and I was more concerned than usual because "I'm in Minnesota and can't just run down there and pay the rent."  In none of my dreams am I ready to give up the apartment, and last night was no exception.  I was trying really hard to figure out how to pay the rent -- in all of my dreams, no one knows I have the apartment, that's part of the need for the apartment, so in my dream last night I couldn't ask someone to go pay it, and I can't use my credit card to pay for it over the phone without Scott figuring out that I'm paying for it.  It's very strange.  It's similar to dreams I have where I can't remember if I'm in school or not, and can't remember if I've been going to class or not, and can't remember if I'm supposed to take a final or not.  I suppose I have the dreams during periods of anxiety, and realize I need a quiet space all my own to retreat to.  I guess it would be good for me to find a quiet place to be alone and pray about what's causing me to have the dream again.  Other than the obvious elephant in the room, of course.

Two more days of freedom.  I'm going to enjoy every minute that I can.  At this time tomorrow hopefully I will have been praising God all afternoon on the piano with my new book.  AMEN!

Journal entry by Corrine O'Day Hanan

Today has been a quiet day.  I slept until almost noon, which was nice.  I haven't been feeling rested the last couple of days.  I had breakfast, then had time to read my Bible a while and listen to Christian music.  Today my choice was to listen to Third Day's Lead Me Back CD; I really love that one and "Your Words" ended up being one that I listened to on repeat for a while.  I ended up ordering the piano book for that CD so I can learn to play some of the songs.

It felt very nice not to go anywhere or have to do anything today.  I think it's the first day since we got here that has happened, and I really, really needed the break.  I don't have any appointments at the Mayo until Thursday, and then things will really be taking off!  I have eight appointments on Thursday, then on Friday I have my Hickman line put in, and then Saturday I start chemo.

I have been talking about the mental preparation for this transplant.  Today I worked on mentally shoring myself up further for being away from my children for such a long time as this is going to take.  I was missing them terribly today, probably because it was a quiet day and so my mind wasn't as busy--when I am busy it's easier to keep my mind distracted.  Anyway, I was thinking about what Dr. Shah said the other day about how one of his patients has been here 50 days and just wants to go home.  That the need to go home can get very strong.  I already know that, having been at the Mayo much longer in March than was planned.  I thought that, since I had already experienced those feelings, they would be much easier to manage this time.  That might be true, but today I wasn't feeling as prepared for it.  I talked to three of my kiddos, which helped.  They sound good, which helps.  I know they miss me, which I grieve.  I don't want to be the source of any emotional pain, and I have no control over that at this time in my life.  I feel sad about that.

This evening I reached out to my friend Recie in Oklahoma.  I had this visceral urge to have a normal conversation with a normal person about normal things.  Then again, Recie's not exactly normal!  (Hahaha, just teasing, Recie.)  "Illness" talk was giving the glory to God for all the recent miracles.  It was blissfully brief.  And then we got to talk about other stuff! We had a good conversation, and I was in better spirits after I got off the phone with her.  She is one of my friends who has volunteered to be a caregiver so we can give Scott a break about halfway through this process.  She will have to come at a time when I can laugh without any physical pain, because the two of us together laugh a bunch and we have loads of fun.

My Bible reading this morning seemed to focus my attention on being mindful of how our actions, and words, as Christians, need to reflect our faith.  An expansion of the Biblical precept, "faith without works is dead." (James 2:20)  Today, I was feeling a bit pensive.  What is faith if I cannot surrender my feelings to God, and ask Him to help me with those feelings?  If my faith is so strong that I know God has all of this under control, I can let go of those feelings.  At least that's how I feel,.  These feelings were the basis of many prayers today.  I wonder if there's such a thing as being so full of faith as not ever feeling pensive in the first place.  Then again, I wonder how our faith would ever grow stronger if it was never tested.  I tend to think it would not.  My human brain experiences fear, doubt, pensiveness, and many other feelings.  But I have the ability to give them to God.

When my daughter Clarissa was a toddler, she had this game where she would walk by me and suddenly just fall backward.  She knew I would catch her, and I always did.  She didn't play this game with other people.  Even as a baby, she knew I would know the game she was playing and catch her, but that other people didn't know that game.  There are so many references to children and their relationship to God in the Bible, but this story with Clarissa reminds me that we humans who are walking with God know that He is there if we falter.  Obviously, it's not a game, but whether it's physically or mentally or spiritually, He will catch us.  I have been growing in faith for a while now, and I have finally reached the point where I feel safe in God's love for me.  It's a peaceful feeling.  Nothing pensive about that!  Here's to a calm, peaceful week. AMEN.

Journal entry by Corrine O'Day Hanan

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

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

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

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Corrine’s Story

Site created on June 9, 2018

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

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