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.



2 thoughts on “The week that almost was, could have been, and wasn’t

    • July 5th sounds like a go. I hope you hemoglobin goes up to 8. I read your blobs. You should be a writer. Joanne. Hi to Cindi.


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