BMT Day #0 through Day #6

BMT Day #0

I slept good last night.  I still woke too early.  Who cares!  No one sleeps in hospitals.  Today is the big day.  First, I get another round of TBI.  Then I wait for the cord cells.  After my trip to radiation, I gladly come back to my older room, 6344.  More remove to sprawl out.  That’s important considering the time I will be here.  Comfort helps.  Then cord cells have arrived.  The first bag of cord cells gets thawed and to me at about 10:15 A. M., as I am eating breakfast.  The second one came by around 12:30 P.M. Both bags together do not add up to even a small bag of platelets, Yet, these are the cells that hopefully engraft and start growing new cells.  One pack of the stem cells is French; the other British. One is Type A+, which I currently have, the other Type AB.  It will be months before I know what my blood type is once again.

Diarrhea, an unpleasant topic.  It finally happened, one bout so far, but a messy one.  These nurses do a great job putting you at ease as they clean you up and help you get dressed.  Nothing since this morning.

I want to go for a walk, but am afraid to because of my bowels.   I don’t want any accidents away from my room.  I didn’t walk yesterday because of the TBI, schedules and tiredness.  If my gut settles, maybe I’ll try later.

BMT Day #1

Early wakeup at 3:30 A.M., but I slept a good five hours before that.  I hate diarrhea. I hate hemorrhoids.  Today has been one of those kind of days.  Because of all the fluids I get intravenously, I am limited to 1200cc per day by mouth.  That’s really hard when the mouth feels like it’s coated in cotton.  That’s the chemo and radiation and some of the drugs. Dry foods are like eating a moisture-soaking sponge.  Foods have no taste.  Even some of the hospital food that tastes good normally tastes like nothing.

I walked once this morning between bathroom excursions.  If my gut settles down, maybe I’ll try for another.  Sitting in a chair or bed gets tiresome real fast.

Each day my medicines change.  Drop this, add that, replace this with that; toss something in just for good measure.  I get medicines to protect everything.  Let’s hope the stem cells start fixing. Stem cells are strange things.  They are supposed to know how to get into the bone marrow and start making the right kind of cells.  The stuff that was in there sure didn’t know what they were doing.

BMT Day #2

No sleep.  Maybe an hour broken sleep between 9:30 P.M. and 4:30 A.M.  Too much diarrhea; not enough sleep.  Add a puking episode this morning to the fun.  Last night was weird too.  The sheets hurt the skin on my legs.  If I turned on my side, the skin that touched hurt.  Skin sensitivity from chemo and radiation could have a lot to do with this is what the doctors say.  They gave me some cream that will numb the skin so I can sleep.

I tried walking a couple of times today.  I didn’t get very far – totally exhausted.  I’m too tired to wash up, but some time today, I have to do that no matter how bad I feel.  I do wash about after each bowel movement, but that’s only part of me.  I am having a hard time with the lack of energy.  I’m surprised I even opened up the laptop.  Getting it out of the case was work.  And it’s only 2:30 P.M.

Tired, but the day improved.  Less diarrhea and nausea and I walked a bit farther.  Hope to sleep tonight.

BMT Day #3

I slept okay last night, about 5 hour in a couple of shifts.  The skin cream worked well. Diarrhea got worse this morning but seemed to settle down this afternoon.  I feel like shit.  That’s the best way to put it.

BMT Day #4

Finally slept, now feverish shitty felling.

BMT Day #5

Pretty much like BMT Days #4 and #5

BMT Day #6

Ditto, but did you know you can crap in your pants while asleep?  Gross.  And this is how I will end this post.

Hospital Food

 

 

 

 

 

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The week that almost was, could have been, and wasn’t

 

Monday, 6/19 –

I get tested for antibodies to find out if the desensitization started last week is working.  I’m told to be ready to get admitted, the same day, if the test being run shows a score under 3000.  Don’t ask me about the test (some kind of antibody testing.)  It takes a while for the test to run, so I go home and wait for a phone call.  Late in the day, I do get the call and the number is over 3000, but Dr.  Tsai wants me admitted Tuesday anyway.  The thought is that maybe they will begin doing plasmapheresis as an inpatient to bring the number lower.  I am supposed to call Tuesday morning, but should packed for the hospital.

Tuesday, 6/20 –

I’m packed, ready to go.  I call in and talk to the stem cell transplant coordinator who checks with the doctor.  The plan has changed.  I won’t be getting admitted, but need to come in asap so another round of Rituximab/Bortezomib can be administered.  Arrgghh!!! Make up your mind.  I go in to High Dose, get these drugs, followed by two units of blood (HgB dropped from 7.7 on Monday to 6.4.)  A long day.

I do talk to Dr. Tsai and complain about the “get admitted today” to “get admitted tomorrow” to” not getting admitted” all in less than 24 hours and how irritating this is.  It feels like I am one of those bouncing balls in a lottery machine and my number doesn’t come up.  She apologizes.  Fine.  Since my antibody levels didn’t drop off, she thought that maybe I could begin plasmapheresis as an inpatient, but after consulting other BMT doctors, it was decided that it would be best to go for another round of chemo towards desensitizing me.  What a mess!  Frustrating, Confusing.  Irritating.  You get your hopes up, then knocked down.  It’s been like that all year.  The plan now is for me to come back on Friday for my routine checks of my blood, then Monday morning to check antibody levels and maybe go through the same confusing, irritating process as the Monday this week.

Dr. Tsai and I have talked about the treatment plans and how they can change quickly, even day to day, and that I should be ready to get admitted at a moment’s notice.  Everything depends on the blood tests now and when my body and blood will be ready for the BMT and when scheduling permits.

Friday, 6/23 –

Dammit.  My HgB is down to 7.4, my platelets down to 3.  It’s decided I could use a couple of units of blood today and some platelets. The bag of platelets was more than double the normal size.  A generous donor, I guess.  One of the units of blood was larger than normal too.  If they didn’t give me some Lasix, I think I might bust like a water balloon.  I also had a chest CT to check on the clearing of the pneumonia I had and other crud.  Let’s hope the scan is clear enough for the BMT.   Pulmonary cleared me after the last CT a month ago.

So, what’s next?  My next potential date for getting admitted is July 5, 2017.  If my antibody counts are under 3000, this date becomes a “sure” date.  If not, the doctors will have to decide on more desensitizing chemo or maybe plasmapheresis.  Also, I did find out that the closest matching donor cord blood I will be getting is coming from France and Britain.  Watch out people, I may become European after my transplant.  Whether that’s good or bad I don’t know.

 

Thursday, June 1, 2017

There is really no reason to write other than I’m getting impatient and antsy and stir-crazy.  This is one outlet that I use to calm me.  No one has to read this blog or post.  This post will probably bore you.

I need to go upstairs, wash up, get dressed and think about when to go for a walk.  I took my pre-walk Tramadol ½ hour ago.  I updated my list of questions for Dr. Tsai and decided to write these random thoughts floating around in my mind.

Ups and downs.  Good days and bad days.  Full of energy or too fatigued to do anything. Feel good one minute, then feel like crap the next minute.  Much of the time there is no rhyme or reason for all this.  I get some blood one day.  It usually makes me feel better the next day.  Other times, I feel worse the next day.  One day I can walk .6 miles (in 2 separate trips) with little trouble.  Other times I struggle to walk .3 miles with many stops to rest and let my aching muscles relax or to catch my breath.  I refuse to cut any single walk back down to .2 miles.

I’m waiting to find out what comes next.  I didn’t see Dr. Tsai on Tuesday (5/30), but will on Friday (6/2).  I am writing this on 6/1.  Dr. Tsai scheduled an echocardiogram for the Tuesday that just passed.  Why?  I don’t know   I found out about it when scheduling called and said I have to come in for the test.  Getting the test could mean that things are moving along and they just want to compare the results against previous tests.  Or, it could mean they see something in the lab tests or my struggles to walk or breathe that warranted this echo.   When you’ve had cardiac issues in the past, you don’t like medical people ordering heart tests.  Cardio signed off on the transplant before.  Let’s hope they are still okay with it.  I will find out Friday.

The appointment time was in the middle of my scheduled time in High Dose.   I go to High Dose, get my labs drawn and dressing changed.  The lab results come back and I could use some blood.  Instead of ordering up the blood right away, they have to wait until I come back from the echocardiogram, which of course is in another building.  Because of the time of day, I only get one unit where I might have otherwise got two units of blood.  No real big deal.  but now I will probably need blood on Friday.

Yesterday, after dinner, I sat down at the computer to check my mail.  Suddenly, my nosed poured blood.  I hope it will come out of the shirt I was wearing.  No warning at all.  Not even a sniffle.  It stopped, with minor pressure, in about a minute.  I didn’t go for the evening walk I was contemplating.

I’m also not too thrilled with how some things are done.  Yesterday, Wednesday, Cyndi called the pharmacy to get my next dose of Granix scheduled and delivered.  She was told that the dosage was being reevaluated and to wait until I see Dr. Tsai.  It’s a minor thing but it would have been nice to find this out from Dr. Tsai’s office instead of the pharmacy.  I’m hoping that they will be cutting back on the dosing since it has been working so well.  This is about the only thing that has been working well, even though I am having a harder time finding a bruise-free area to inject myself.

Well, I’m now dressed and Cyndi and I went on the walk.  I was miserable and almost felt like giving up on it, but I didn’t, thanks in a large part to Cyndi’s encouragement.   My back muscles kept tightening up today, faster than normal and they took longer to loosen up when I rested.  I got the .3 miles in.  When we got home Cyndi, put some Ben-Gay onto my aching muscles.   I’ll try for a walk this evening, but maybe the .2-mile route.

It’s time for lunch.  This is it for this post.  If it was too boring, I warned you at the beginning.  Now, I’m bored writing it, with adding any more words to this mostly unnecessary post.