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







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.








Finally getting admitted for a BMT

I started writing this on June 27.    At the time, it was a what-happened post and a what-will-happen post.  It’s now July 4, my off day.  Tomorrow, I get admitted to the hospital.  Once in the hospital, I’ll try to post when I can, but I expect a lot of bad days.  Let’s say that I am a bit nervous, a little apprehensive, more than a little scared, hesitant, relieved that it’s finally happening while wishing it wasn’t happening.

I’ve been fighting infections since the beginning of the year while waiting to be transplanted.   All I know is that I cannot live as I do now with transfusions that do little more than keep me chugging along.  The drugs I take to fight the infections are useful, but how long can my body handle those before they rot away my liver and kidneys and heart?  I tire easily and it seems that I tire more frequently than just a few months ago.  I don’t have the strength to do much more than walk about a mile.  Walking used to be pleasurable.  It is now work, hard work.  I must force myself to do it at times.  I can give up, stop any more transfusions, toss the drugs and let myself deteriorate, but that’s not me.  I have to go with the only treatment that can cure this disease.  I aim to beat this disease. 

July 5 is the first day of chemo.  July 11 is the day I get transplanted with cord blood – Day 0.  If the graft takes, maybe I will celebrate two birthdays every year.  Let’s change that “if the graft takes” to “after the graft takes and my bone marrow produces normal healthy cells in the right quantities.”

The week of the 26th of June –

It’s getting close.  Ever since the mini-fiasco of last week, everything has been moving along at an accelerated pace.   Monday was the day when I had my labs drawn for the antibody testing.  Guess what?  No results were to be had. I get a call in the evening from Sheila, the stem cell transplant coordinator, that the tests weren’t run because of some screw-up in the lab and that I need to get blood redrawn Tuesday morning.  Shit.  So, I go in on Tuesday, get the antibody labs drawn and the regular CBC check.

My Hgb on Tuesday is 7.4, down from 7.7 on Monday.  The original plan was for me to come Wednesday, but since I was here in High Dose anyway, well, just juice me up with a couple of units of A+ and send me home.

Before I went home – good news.   The antibody count the doctors were looking for (under 3000) was achieved.  I hit the number 600.  Great.  The desensitization with Rituximab/Bortezomib is working.  Dr. Tsai wouldn’t mind me going into the hospital the next day, but “Sorry Doc,” Sheila says, “The schedules don’t permit that.”  Besides, the cord blood I will be getting has not arrived.   Dr. Tsai had to agree.  The plan is laid out, however.

Wednesday, I come in for another round of desensitization. That means a couple of hours in High Dose getting Rituximab/Bortezomib.  While I was getting chemicalized, that nose of mine started to bleed.  That means one thing.  Give me some platelets.  The policy has been to not give me any platelets unless I am bleeding no matter how low the platelet count.  A nosebleed is a bit hard to hide.  It wasn’t much of one, but enough that I got a bag of platelets.  2 more hours of boredom sitting in High Dose watching inane daytime TV game shows and news.  I wasn’t planning on staying as long and maybe would have brought my Kindle to read.

I now have a plan, a calendar that Sheila gave me specifying the dates of things to come.

Friday, I go in for my regular lab checks (CBC, mainly).  If needed. I get transfused.  If not, I go home.  I did need a couple of units of blood.  It made for another long day.

What worries me now?  Getting sick before July 5.  I got a bit scared Wednesday night when I ran a fever in the 99.4 to 99.9 range.  Thursday morning, it is back to 98.7.  Maybe it was a late reaction to the chemo or platelets I received yesterday.  I’m fearful of getting sick now when things are getting so, so close.  My WBC and neutrophils are down since they cut back on the Granix and I hope there are enough fighting cells to ward off minor infections.  As if I am not worried enough, I had the same low-grade fever Thursday night.   Fortunately, normal readings since then.

Saturday, Sunday and Monday, I get to go in to High Dose for injections of KGF, keratinocyte growth factor.  This is supposed to help build up the mucus in my mouth to prevent the mouth sores that I will probably get during the five days of chemo and radiation.   From what I heard about mouth sores is that they are something you do not want to get.

Monday, I get to give up another tube of my blood for another antibodies check.  There were a lot of unhappy people when my labs didn’t get processed last Monday.  Some lab people must have got their wrists slapped pretty hard for leaving my blood lying around instead of testing it.  It would be interesting to hear the conversations that took place.   Because of the troubles my blood caused last week, I have to come in earlier than usual.  No big deal.

I get the 4th of July off.   One day is needed between the KGF and start of chemo.

The KGF injections – Saturday went well.  They made me sit around for an hour afterwards to make sure I didn’t react badly.  I didn’t.  Sunday was an in-and-out visit.  My tongue at times feels like it has a coating of some kind but it doesn’t feel like that all the time.  It is either my imagination or the drug working.  I’m not sure yet.  The third and final injection is now in my system and hopefully producing all the mucosa it can.

I didn’t get any blood or platelets on Monday.  The numbers weren’t too, too low and I wasn’t bleeding. We’re all just waiting for the antibodies testing results today.  They need to stay under this 3000 number that the doctors want to see.   If not, well, we’ll deal with that if it happens.  The word is that if I don’t hear anything from Sheila (transplant coordinator,) I should report to admissions on Wednesday.  It’s strange WANTING to be admitted to a hospital.  I do, so, so badly.  I am not sure I can take many more setbacks.

This is the end of this post and I will hit the Publish button on this site sometime today after I am reasonably sure that no one will call me to tell me that I’m not going to get admitted.  This is called paranoia and superstition that something will jinx me again.


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.


The first 5 days (or Coming Soon at a Hospital Near Me)

I’m not there yet, but this is what I have to look forward to when I get admitted to the hospital.  This is the current plan.

The first five days will be used kill my bone marrow.  At this point I will have no immunity.  I wonder if a baby has more immunity that is passed on from its mother.  Next comes the cord blood stem cell transplant.  If things work, I will slowly generate healthy bone marrow that will produce healthy cells.  I will stay in the hospital for several weeks and once discharged will be in home isolation for 100 days, with daily visits to High Dose for part, if not the whole time.

The Killing Stuff:

  • Fludarabine – once a day for 5 days, a 30-minute infusion
  • Cyclophosphamide – the first day, administered over a 1-hour infusion.  Since this drug can damage the bladder, it requires the placement of a catheter to continuously wash out the bladder.   I think they said that I would have the catheter in place for at least 24 hours. This one does not sound fun, at all.  Actually, none of this sounds like any fun at all, but there is no good alternative.
  • Total Body Irradiation (TBI) – 3 sessions about 12 hours apart where my whole body gets zapped.  Will I glow in the dark?

The Rebuilding Stuff:

I get the following drugs at the time of transplant or just after.   They are designed to reduce the risk of GVHD (graft-versus-host-disease) where the transplanted (foreign) cells react adversely with my own tissues.

  • FK506 and Cyclosporin – works towards preventing any rejection of the transplant
  • Methylprednisolone – a steroid used to reduce inflammation

The Rebuilt Me:

  • To be determined.  It will take awhile.

Any day now

6/13 – a Tuesday (and it’s not Belgium)


Inject radioactive dye, scan, inject drugs to simulate exercise, more radioactive dye, scan again.  This is how I started my week.  The test took a couple of hours and I couldn’t have any caffeine before it.  That’s okay.  It was too hot for coffee anyway. This test was done using SPECT (single photon emission computed tomography) and not PET (positron emission tomography).  I had whole body PET scan done not too long ago too, from the top of my head to the bottom of my feet.  Both these tests, of course, differed from a MUGA (multi-gated acquisition) scan I had earlier.  Then there are your run of the mill CT (computed tomography) scans, echocardiograms (What!? no acronym for this?), EKG or ECG (electrocardiogram. Wow! 2 acronyms for this one.)

All these tests, all these letters.  All these $$$$’s.

Sorry about the ABCDXYZ … distraction.  Immediately after the SPECT, I went to the cardiologist who ordered it.  I need his cardiac clearance to get the BMT (Oh no! More letters.)  Well, he did clear me even without looking at the stress test results, which wouldn’t be ready for another day anyway.  I am considered a moderate cardio risk.  If the stress test were to find something bad, all that would mean is that I would be put at a higher risk.  There is no reason to keep me from the BMT or BMSCT.  I’ll get to these letters later.

My last stop was in High Dose, or should I say HDTU.  I got my labs drawn, my HgB was 7.9 so no blood was needed.  I wasn’t doing any bleeding so I got no platelets even though the number was down to 5.

This thought crossed my mind that 40 years ago today, I began working at Bell Labs (Bell Telephone Laboratories, I think was the official name, then) in Naperville, Illinois.  So, what. This means nothing to most people.  It’s just a random thought.  I was 40 years younger too, in great  shape, just having coming back from a multi-day canoe trip in the Boundary Waters of Minnesota when I started working.  Now, I’m fighting to stay alive.

6/14 – must be Wednesday

Excitement?  I didn’t know I was going to be coming to High Dose until yesterday.  Dr. Tsai decided that it is time to start desensitizing me. Desensitization is needed to get rid of unwanted antibodies in my system.  The goal is is to minimize the risk of any antibodies I have interfering with the cord blood I will receive during the bone marrow transplant. We want to get along and not reject each other.  Anyway, I started on a course of Bortezomib (IV push) and Rituximab (about a 6 hour IV infusion.)   I did have my labs drawn and my Hgb dropped from 7.9 to 7.0 in one day.  That explains why I was feeling so much more fatigued this morning.  I’m not bleeding so I’m not getting platelets, but I have go back Thursday for blood.  The Dr. didn’t want to overload my system with any blood products today.

Good news about the stress test – nothing bad found.   I was at moderate risk before and remain a moderate risk when it comes to cardiac issues.  Good enough for a transplant.

More good news.  Now that desensitation has begun, I am told I may or may not need plasmapheresis.  If the Rituximab/Bortezomib can get my antibodies to a low enough level there will be no need for it.  Even if they decide I need the plasmapheresis, it may not have to be done before I get admitted. It all depends on my antibody counts next Monday.  I guess it takes 4 or 5 days to see how effective these drugs were, then a day for the test results.  The word is that I should be ready to pack up and go to the hospital at any time with little warning, 

6/15 – a Thursday

I got both blood and platelets today, the platelets because I had some bleeding issues this morning – one of my nosebleeds.

I have to wait until Monday to get my labs drawn and probably Tuesday to find out what’s going to happen next.  Everything is starting to move so fast now.

Before I forget, BMT is Bone Marrow Transplant.  BMSCT is Bone Marrow Stem Cell Transplant.  I use the phrase stem cell transplant and bone marrow transplant interchangeably.  I will get the stem cell transplant in the BMTU, Bone Marrow Transplant Unit.  Oh yeah, HDTU is High Dose Therapy (or is it, Treatment) Unit.  I should know since I’ve spent so many days there this year.  I’ll have to ask.

Getting closer

Yesterday, Friday, June 9, was a long day, a hectic one at times.   On days I go to High Dose, I get up at 5:30, wash up and get dressed, have some breakfast, make a lunch in preparation for a full day in High Dose, get all my pills and reading material together.  I leave about 7:20. On good traffic days it takes less than ½ hour, other days more.  After I get to Loyola, I text my wife that I made it there and am going into the building.  Cell phone service is sketchy at best and Sprint seems to have the only reliable service inside the building.  I don’t have Sprint.  I don’t have cell service in the Cancer Center.

Next, I get my blood drawn, wait for the results and hope I won’t need anything.  I usually do.  Once I know, I call Cyndi from the room phone, let her know which room I’m in and how long my day will be.  I began with a round of platelets, then snuck out for a bone marrow biopsy with Dr. Tsai, came back, got some blood going, had lunch, got some more blood going, dealt with getting appointments scheduled and talked about my future treatment plan with doctors and nurses.

Finally, I left for home, in the worst of rush hour, stopped at Walgreen’s to pick a prescription I refilled, got home, plopped into my chair only to remember that COMCAST SUCKS. (The cable went out on the main TV and COMCAST won’t be out to fix it until Monday – 4 DAYS.)  The other TV works but it’s not in a comfortable place to watch and it doesn’t have all the channels the main TV has.

Plopping down wasn’t the best idea since my butt hurt from the biopsy.  It wasn’t too painful, but it reminded me that 4 or 5 new holes were dug out of my pelvis across several attempts to get at some bone marrow and fluids.  The one and only time my pelvis was generous was the very first time I had a bone marrow biopsy.  Since then, the doctors can’t seem to find much of anything.  This was the fifth biopsy.

Where would I rather have been yesterday morning?  At BAGS.  It stands for Breakfast at Grandma Sally’s.  Grandma Sally’s burnt down and never got rebuilt, but the breakfasts continue with a handful of people I used to work with.  Every few months, we get together for breakfast.  It was nice.  I can’t go to these or any breakfasts (or lunches or dinners.)   Well, maybe I could go if the restaurant is not busy, it is mostly empty and if I eat away from anyone else.  That means I eat alone or maybe with my wife.  Someone somewhere even said I should carry some wipes and wipe down the table before eating.  The doctors want me to avoid infections.  I’m not going to argue about that.  I’ve had enough that have delayed me from getting transplanted.

Cyndi says that I am not in control of my life and that the doctors at Loyola are.  Cyndi is right.  They have controlled my life for a while now.  It stinks, but I have no or very little choice.  Not letting them control my life isn’t an option.  I won’t have one if I don’t let them control me.   I get my 2 cents in when I can.  That seems to be the best that I can do for myself.  I’ll have to give this topic more thought.  I really don’t have a life without the doctors.

What’s next —

June 21, 2017 could be the date that I get admitted to the hospital for my bone marrow stem cell transplant.  I say “could” because there are a couple of things that need to get done first.  Getting cardiac approval for the transplant is the next hurdle.    I had an echocardiogram done recently.  It showed some changes from the previous echo that Dr. Tsai wants cardiology to look at. The appointment should have been scheduled for some time last week and wasn’t.   It finally got scheduled for Tuesday morning.   Then after scheduling the appointment, the cardiologist’s office calls back and says they want me to take a stress test before the cardiologist looks at me and tells me if I am good to go or not. You would think that they would have had the sense to mention and schedule the stress test before scheduling the doctor’s appointment.  Now,  the stress test is scheduled for Tuesday, at the same time as the cardiologist.  The cardiologist is going to have to reschedule, hopefully later in the day Tuesday or in the same week.

What a mess!

Trying to schedule anything, especially when multiple doctors are involved is a pain in the ass.  Doing it on a Friday afternoon is even harder.  Cyndi did the heavy work here.  It wasn’t me.  This is where her comment about my having no control over my life originated.   She sensed that I’m being pulled in all directions without control from these different fiefdoms who don’t always play well together when it comes to appointment scheduling and coordination.  Each specialty seems to live by their own rules that ignore the needs of other specialties.

Cyndi did a great job  trying to get appointments scheduled, handling multiple phone conversations with doctor’s offices and myself all at the same time .  I love that woman.

After the cardiologist hurdle, I get to get begin a desensitization process to reduce the number of antibodies in my system so that they do not encounter rejection problems with antibodies found in the cord blood stem cells that I will receive.  My latest labs show that I have less antibodies than before which will speed up the process of getting rid of as many antibodies as possible.

The first step is to get an IV infusion of Rituximab.  It takes 6 to 8 hours to administer.  The way I understand it is that it doesn’t kill off any antibodies, but works on the cells that produce antibodies.  Later in the week I get another drug via an IV called Bortezomib.  This one only takes about 15 minutes to administer.  I’m not sure what this one does.   I’ll have to look that up. Once  these drugs do their thing, it will be determined if I need to go through any plasmapheresis, which is used to remove antibodies from my blood.

If I get past all the above, I will be admitted into the hospital where I will spend several weeks, maybe a month or more, first getting my immune system killed, then replaced with cord blood.  If things work, the cord blood will begin to produce healthy bone marrow and healthy blood cells.  One problem with cord blood is that it takes longer to get cell production going than with matching donor cells.  This is mostly because there are less cells in cord blood.

Another post will get into the nitty-gritty of the hospital experience.  And, of course, if anything changes or comes to mind before any of the above happens, I’ll post about that.