Chapter 38: The Coin Toss: Buttered-side Down

B87E7685-CAEB-43A1-9DD5-4350D37B8DE9I’d like to say that I felt SO good after the journey that I was excited about the fact that a week later I was flying to Los Angeles, where, at Cedars Sinai Medical Center, I would lay face down and have a LONG, thick, hollow needle stabbed into my pelvic bones 20 times, 10 on the right, 10 on the left, sucking out a total of 100cc of bone marrow.

Yeah, I’d like to say that.

But seriously, the first big procedure for the stem cell clinical trial had been scheduled for weeks, I was by no means looking forward to it, but I wasn’t dreading it either. With the owl by my side, I was still flying pretty high. Oh, there was occasional turbulence – something would remind me of something I could no longer do, or something would cross my mind about what was in store for me as the ALS progressed – but I experienced a newfound resilience, the ability to not get caught in either the past or in future-tripping. It was much easier for me, upon hitting a bump in the road, to snap back into the present moment.

I was aided as well by having started a new morning routine the day after the journey, a routine I’d been planning, a way to start each day off on the right foot: Before even getting out of bed, I meditated for 20 minutes; once downstairs, I took a microdose — which is a sub-perceptable 0.2 grams of psilocybin — while drinking my coffee. I read, and finally I did some writing. There was a steady, discernible flow of positive energy that belied the trajectory my body was on, enabling me to face the day-to-day, to manage my symptoms, to  continue working at the university, albeit reduced down to 20 hours per week, to make the monthly trips to Los Angeles, to find time and energy for as much quality of life that I could manage with the precious time I had left.


Highlights & Lowlights of the Clinical Trial

  • Bone marrow extraction was mostly uneventful, though I was sore for three days afterward.
  • Bone marrow was then sent to a lab where stem cells were cultivated from it and prepared for eventually being injected three times, eight weeks apart, into my lumbar spinal fluid.
  • The first injection seemed initially no big deal, under local anesthesia a needle was inserted, some spinal fluid withdrawn, and then fluid, with either my own stem cells or a placebo, was injected in the same location. Unfortunately, I experienced a lot of lower back pain for several days after the procedure.
  • Thus followed a pattern: one month later, a spinal tap to just remove fluid for testing; another month and then the second withdraw/injection; another month and another withdrawal…
  • Meanwhile, not only was I not experiencing any benefits from the two injections I received, but the progression of my symptoms continued unabated. Each trip was increasingly more physically difficult. I began using wheelchair services in the airports, a rotating crew of friends, my sister Ilene, and Laurel accompanied me in order to assist with mobility and lugging baggage.
  • After several months, I happened to comment on an item on Facebook regarding the trial, and was soon after messaged by someone who invited me to a private Facebook group for people in the trial and their families. In that group, were people who were participating at various of the six trial sites in California, Minnesota, and Massachusetts, sharing about their experiences, some people were getting better, others were not, and the suspicion that I was in the placebo group emerged.
  • During my visit wherein I was scheduled to get the third of three injections, I was weaker than ever, quite frankly I was dreading the procedure, and nearly as bad, I was dreading the fact that I would have to make three more monthly visits after this one, for three more withdrawals of fluid.
  • A mere hour before I was due to be injected, I had a crisis of conscience. I felt intuitively certain that I was not getting the stem cells, and yet I’d chosen to participate for more than just selfish reasons. I’d volunteered in hopes of helping the science move forward, of helping a potentially groundbreaking treatment make it through the FDA approval process and then out to people who were dying everyday of this horrible disease.
  • So I came right out and asked the trial coordinator whether or not — should I drop out of the trial right there and then — they’d have to recruit a new patient to take my place, starting from the beginning of the 14-month process…in other words a significant setback/delay.
  • The trial coordinator did not hesitate with her reply: No, they had enough data from me and would not have to start over with someone new.
  • I walked out of the hospital that day and never went back.

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