Bored Silly!

It is now day 14 of my stay here at Beth Israel as part of the CAR-T Cell clinical trial.  I hope to be released next Monday, 2/26, so the end is in sight.  I am in a Phase 1 clinical trial, which means they are looking for side effects.  So far, I have had none.  I am feeling very good, except for my back.  Every day they ask if I have experienced all sorts of bad things.  My answers are always No.  I am told I look good, much as I feel good.  To give them something to note, I inform them that I find it very hard to find a comfortable position in the hospital bed.  But that is nothing new.

I do lots of reading.  The Confession, a John Grisham page-turner.  Radiance of Tomorrow by Ishmael Beah, a novel set in Sierra Leone.  Born on Third Base by Chuck Collins, a good book that everyone should read.  Waking up White by Debbie Irving.  Recommended by my sister Margo, there are remarkable parallels to the Jones family upbringing.  Irving grew up in Winchester, adjacent to Lexington where we grew up.  They vacationed in Maine, just as we did.  All 5 kids attended top flight colleges, just as we did.  All grew up blissfully unaware of their own privileges or the handicaps others had to endure, just as we did.  A remarkable book.

But I for one can only read so much.  Then I lose consciousness.  So, I throw in a little exercise.  I’ve gotten a couple of nurses to climb stairs with me, but most of the nurses are not very keen.  I impose on my visitors, most of whom humor me.  By the time I’ve climbed up 3 flights, I am winded enough that I have trouble keeping up the conversation.  There are the Olympics on TV, but I find I have trouble pretending to care.

Here is Bridget, the nurse who administered the infusion of CAR-T cells a week ago Monday.  

She has just extracted 4 vials of blood from me for the study.  They seem to be extracting lots of blood, lots of times.  Last night it was 9 vials.

You also always have a PCT (Patient Care Technician) assigned to you, who comes every 4 hours and takes your ‘vitals’.  Blood pressure, temperature, heart rate and oxygen level.  Here is Pierrette, with 

the portable device that does the vitals.  The PCT also arranges the supplies for the shower, which is well down the hall, and a major event every morning.

I do spend a certain amount of time on the internet, trying to understand just what I am going through.  Here is a YouTube video recommended by Evadne Moy, a member of Barbie’s chorus who has also supplied several of the dinners that have relieved me from having to eat hospital food 24X7: https://www.youtube.com/watch?v=RpkgLzyUUAA.  I wondered if this video, which is remarkably understandable for a layman, gave an accurate picture of the process.  So, I asked Elizabeth, the person shepherding me through the clinical trial, if she would recommend a link explaining the CAR-T cell mechanism.  Here it is: www.cancer.gov/about-cancer/treatment/research/car-t-cells.  And here is Elizabeth:

Elizabeth comes by every day, and most days gets to administer some questions that indicate if I am losing it mentally.  Counting backwards from 100 by 7, following directions, replicating a drawing of 2 pentagons that overlap.  Apparently if I ever experience the neurological symptoms they are looking for, I won’t be able to do these tasks in a characteristic way.

A big issue for a while was where I would go after being released on 2/26.  The choice was to an apartment close to the hospital or to Brian & Bridget’s in Jamaica Plain.  The problem with JP is 3 boys ages 5, 3, & 6 months.  The older 2 are in day care or pre-school, so they are exposed continually to colds or the flu, and they are germ factories.  The problem with the apartment is that you are supposed to be accompanied by a responsible adult at all times so that if you have a side effect or get sick, they can make sure you get back to the hospital.  Barbie, with the chorus and piano teaching cannot do it Monday afternoon – Friday morning.  We were about to put out the SOS when the doctors discussed my case last Friday.  They recognized the logistical issues associated with the apartment and decided that I could reside in JP.  They made it clear that precautions should be taken (wearing a mask when with the boys, washing hands often), but I can enjoy time with the grandkids.  FAR better than a monastic life in an apartment for 2 weeks!

So, is there any sign of the dreaded CRS (Cytokine Release Syndrome)?  So far none.  They don’t actually measure cytokines.  They measure a liver product, CRP (C-reactive protein) instead.  It would spike if CRS were to happen.  So far, my CRP has been totally normal.  Initially they were taking blood every 4 hours and measuring it.  Then every 8 hours.  Now once a day.  The scale on this graph is 0 – 50 so that minor bumps in the normal range (.5 – 3.0) don’t look significant:

I may be bored silly, but I am incredibly grateful to be part of this program.  If being totally bored is the cost of having all my Multiple Myeloma cells attacked and destroyed by CAR-T cells, I’ll pay the price.  With enthusiasm.  Bring on the terminal boredom!