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.


2 thoughts on “Any day now

    • There was a movie in the late 60’s called “If It’s Tuesday, It Must be Belgium” about one of those tour groups that rushes you through a country a day. When I wrote Tuesday, the movie popped into my mind. My mind works like that some times. It was a good movie.


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