Okay, things are getting real now. My blood counts are all changing at a fairly rapid pace, all in the wrong direction, and my symptoms are worsening. None of the medications we’ve tried had side effects that I could tolerate. When you say, “No, I’d rather die than feel this,” you know that’s a bad side effect.
We have a few pharmaceutical options left, but they’re basically iterations of drugs that came before, so I’m not hoping for much. Plus, they all only treat symptoms anyway, with some slight longevity benefits of maybe an added year. So that leaves just one thing…the dreaded STEM CELL TRANSPLANT (SCT), which has some family and friends questioning if it should even be legal as its consequences can be so severe and devastating.
When all the research is said and done, a myelofibrosis patient has about a fifty percent chance of surviving the first year after an SCT. If you can make it to year two, then the prospects of survival get much better…like if you can make it to two years, than you have an 80 percent chance of living to ten. But here we're talking only about quantity of life, not quality, which brings up the awful illness an SCT can cause, called Graft Versus Host Disease (GVHD). Finding yourself a victim of this little gem means your body is rejecting the new stem cells now flowing throughout your body in lieu of your own (chemotherapy and radiation first completely destroy your bone marrow), even though you may actually be cured of your cancer. Unlike one who has, for example, a liver transplant, where all rejection is focused solely on that one organ, stem cells reach every corner of YOU, which means that rejection can happen anywhere, everywhere, and, well...all at once.
I joined Facebook’s GVHD support group just to see how those patients were doing, and what they suffer with is mind boggling. The other day, a woman spoke of getting scleroderma in her esophagus, which started a whole thread of other patients who had also gotten it. You literally cannot swallow when this happens, or if you do, the food can accidentally slip into your lungs (fun!), so doctors do multiple operations to “stretch” the esophagus to get it working again, all while you’re being fed with a feeding tube.
The list is an endlessly odd group of torturous side effects that, mind you, MAY NOT HAPPEN. So to do this transplant is a total coin toss.
At the pain clinic, my nurse practitioner worked for five years as a nurse on the stem cell transplant unit at Memorial Sloan Kettering in New York. She said the number one complaint among patients was “no one told me it was going to be this bad.” With the amount of suffering and death she saw, she said that she would never recommend an SCT to any of her own loved ones. That’s saying something indeed.
There was even a group of nurses who recently published a paper that essentially scolded doctors for throwing patients into SCTs too quickly and too uninformed, saying that the physicians didn’t understand the severe psychological trauma that the operation caused for many patients, loved ones and caretakers alike. Compassion burnout often sets in, isolating the patient even more, who is constantly going back into the hospital for some terrible complication, like infection.
When I had the precursor to this illness, Essential Thrombocythemia, I had a very hard time with it and was in the hospital countless times with life-threatening complications, so I know what extreme hospitalizations are like.
But as I feel this illness worsen, an SCT may be my only option. It’s easy to say…oh, what the hell...just do it. But I had an insight recently that awakened me to the real reason I don’t think I could ever do a stem cell transplant, and it’s this: Psychologically, I’m tapped out on extreme hospitalizations. I honestly think we each have a lifetime limit on what we can endure, and I believe I have reached mine. Even just thinking about the months of torture the operation alone would involve, I can feel the fragile network in my brain begin to collapse. About two months ago, I had to have an endoscopy, and I could barely tolerate that, even though I was home by midday.
Most patients who have this transplant are clueless about how bad it could possibly be, and it’s criminal that their doctors don’t tell them. But I know. I don’t want to be alive for the sake of being alive. While the symptoms of MF are extremely difficult, I’d rather choose the devil I know than end up in transplant hell.
My job right now it to learn how to LIVE better. Too often, I’m frozen in front of the TV set, obsessing about survival and my horrid blood counts. Granted, the fatigue is overwhelming, but why then not just enjoy the deep sleep it brings, which I have to admit can be lovely. I have to get better at this. Not to belabor the point, but the clock is ticking.
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