Countdown to BMT

BMTU Day #1 or BMT -6

Started out good with a breakfast at Blueberry Hill in Oakbrook – NY Strip, eggs and hash browns, some kind of pumpkin pancakes for Cyndi.  After breakfast, we got to Loyola Hospital, I checked in and went to my room, Room 6342, which will be my home for the next 2 to 4 weeks.  The morning in the hospital went well.  I started out with some Fludarabine, the first chemo drug on the menu.   My routine bloodwork came back showing low platelets and Hgb so after this round of chemo, I got some platelets. The blood transfusions would have to wait until later.

The next chemo drug I got today was Cyclophosphamide.   This is a nasty drug that can destroy the inner lining of your bladder is it isn’t flushed constantly. That means catherization. Not pleasant, but necessary.  This was the first of my problems today.  Two nurses couldn’t catharize me. They called urology.  I hate urologists. Those sadistic cretins get the Foley catheter into my bladder. Painfully.  Very painfully.  I guess I have some kind of stricture that caused the problem.  I forgot what they called it exactly.   It doesn’t matter.  The tube is in.  I really hate urologists.  The chemo part went fine. They hung bags and bags of fluids, some go into your veins and others go  directly into the bladder.

The next chemo drug they gave me is Antithymocyte Globulin(ATG)..  This one began well, but after a while, I started getting short of breadth. The shortness of breath came about because of all the fluids being pumped into me and the use of this drug.  They took some x-rays and found some fluid in the lung. They put me on oxygen.  It took several hours before I could catch my breath.  Sometime soon after my temperature spiked to about 102.  It was a miserable evening and night.  Between the catheter and its attached urine bag, the oxygen tubing, leads for the EKGs and IV tubing attached to both my ports, I didn’t sleep much.  The ATG ran until about midnight, then I got my two units of blood.  It is now 4:00 A.M. They also run labs at about this time so if you are asleep, for even 5 minutes, they will wake you up.  You don’t sleep in hospitals; you doze off when you can.

BMTU Day #2 or BMT – 5

The days really run into each other.  I “awoke” about 5:30 A.M because I couldn’t sleep. I also woke up sweating and this went on for a couple of hours. It must have knocked out my fever.  Meropenum could also have had a little to do with lowering the fever.  It’s an IV antibiotic they started when the fever spiked.  I got washed up, not easy with all the tubing, then after breakfast, got my dose of Fludarabine.  Three more days for this drug.  The Cyclophosphamide is a one-day only so I get no more. The ATG was going to be a 3-day treatment, but Dr. Tsai decided to call it off because of the issues with I had with this drug yesterday.

The catheter was removed by a nurse around 2:00 P.M., about 26 hours after it was forced in by some sadistic urologists.  It is good that it is out.  Of course, it burns like hell when I pee, and the pee has a fair amount of blood mixed in.  Gross.

The psychology department has a couple of med students doing a study on whether transplant patients recover faster while wearing a Fitbit or while not wearing a Fitbit.  It’s a randomized study and I ended up in the Fitbit group.  However, Fitbit is too chintzy to make longer straps or to provide extenders for their products. I guess big-wristed people don’t need anything to help make them fit.  Someone in the psych department found a way to take a little string and use it as an extender.  The Rube Goldberg method, I guess.  I got my Fitbit on, I did my baseline stair-walk for the study.  That’s that.  Later, they will make me do the same and see if Fitbit users recover faster than non-Fitbit users.

The rest of today – eat, drink and be merry.  No, not really.  Eat, yes.  Drink, anything non-alcoholic.  Be merry, probably not.  There will be nothing to watch on TV.  I will read some until my eyes tire. I will, for at least one time, grab a face mask, grab my IV pole and walk down the hall and back.  Then I will try to sleep.

BMTU Day #3 or BMT – 4

I slept good, except for the times my bladder woke me up and when they came back for the 4:00 A.M. lab draws. All I get today is the Fludarabine as far as chemo goes. And, I get another unit of blood and a bag of platelets. Cyndi came by around lunch time and I took my afternoon walk to see her off at the elevators.  That’s as far as I am allowed to go.  I had to rest a couple of times, but at least I’m walking.

I’m on a low-bacteria diet with a 1200 cc fluid restriction.  This means that I cannot put pepper on my eggs in the morning. Pepper is bad.  Eggs deserve pepper.  I cannot put an onion or tomato or have a pickle with my cheeseburger.  No lettuce; no raw fruits.  Overcooked everything seems to be the rule.

BMTU Day #4 or BMT – 3

I didn’t sleep very well last night.  The longest stretch of sleep I got was just over an hour, twice.  Between the lights, the interruptions, the room temperature, a stuffy nose and a bit of chest congestion, sleep was impossible.  These people like to wake you at the worst times when you are in the deepest part of your sleep or just before you really zonk out.

The rest of the day has been uneventful.  The doctors make their rounds.  Dr. Smith had been the doctor on this floor this week.  He’s not my doctor, but he’s pretty cool; great bedside manner. The doctors here work well with each other, it seems, and that benefits all the patients in the BMTU. I like the way he interacts with his residents and all the others that make rounds with him.  This is a teaching hospital after all.

I got my Fludarabine, one more day to go, and some platelets, but no blood today. That bag of platelets was humongous.  I’m told to get ready for the diarrhea, but haven’t had any so far, nor have I had any mouth sores. These are gross, disgusting things you think about when you get chemo.  My body is bruised so badly, it looks like I went through a pulp mill, or at least a wringer.

Cyndi came by in the afternoon.  It’s good to sit with her.  I’d rather be sleeping next to her, but that will be weeks from now.   I was really tired after not sleeping much yesterday so I went to sleep early.  I’m glad I did.  After about two good hours of snoozing I was woken up to be kicked out of my room.  It was needed for an emergency patient.  There are 14 BMTU rooms, 12 monitored and 2 unmonitored. Since I was the least “sick” and not being monitored, I was the unlucky one to be moved into another room.  11:45 P.M. is not a good time to do that, but the person who ended in my old room must be really sick.  Transplant patients, after transplants, come back to this unit when they become ill.  I understand the move, but it sucks.

BMTU Day #5 or BMT – 2

I started out by sleeping fairly well in this room, but trying to get the temperature adjusted and finding the best way to keep it dark was a challenge. The nightlights in the room are too sensitive, too bright and take forever to dim. Maybe I’ll sleep better tonight.  It’s not like I am unfamiliar with this room.  It was the room I had the second time I was hospitalized earlier in the year.

Today’s agenda is much like yesterday’s –  platelets, Fludarabine.  I also get more blood.  The biggest change is that today I started on Tacroliimus, an anti-rejection drug.  Tomorrow comes the TBI, Total Body Irradiation.  Sounds like fun.

BMTU Day #6 or BMT – 1

I’m awake at 3:30 A.M..  Before that I got a couple good hours of sleep.  They want to draw labs early and get me some blood before I got for the TBI.  It is supposed to help with the radiation somehow,  I;m scheduled to be picked up at 7:00 A.M. so no breakfast.  The cafeteria service opens at 6:30 A.M.  They are neer on-time nor fast.  The transport vehicle to get me to radiation oncology is late.  The TBI goes smoothly.  IT’s just weird.  After the zapping, I get back to my room, get some platelets, get breakfast, see the doctors on their rounds.  Dr. Smith is off the floor now. Dr. al-Mansour is on duty this week.  I’ve only met her once before.  No opinion yet, good or bad.

The afternoon trip to radiation oncology gets their too early.  I have to wait 20 minutes before I can get zapped.  Requirements between zapping is a 6-hour minimum.  Sitting on a stretcher is not comfortable.  The zapping goes good, but on the way out, my ambulance is boxed in by two others, so we wait again.  The road between radiation oncology is in bad need of repair.  My guts shook constantly at each bump, crack, section of missing pavement and pothole.  It wasn’t pleasant.

Tonight, I will order a late lunch/early dinner.  Actually, looking at the clock, it will be dinner. I’m getting more blood.  I have virtually no immunity right now.  One more TBI treatment tomorrow, then the BMT.

I hope I can sleep some.

The next post will come sometime after the BMT.

 

 

 

 

 

 

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3 thoughts on “Countdown to BMT

  1. Ray, Wishing you a successful BMT and recovery. Have you thought of using a sleep mask? Thank you for sharing your journey. Love you. Chris

    Like

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