For almost a year now, I have been waiting to undergo a bone marrow transplant. It’s been right around the corner for nine months. Every month I do a round of chemotherapy, and each time I am told to wait. At my last appointment, my doctors caught me off guard by setting a tentative date for transplant: April 2. I feel extremely lucky to have a donor and to have access to some of the best medical care in the world, but my sense of waiting — a terrible anticipation — has become more acute as the date approaches.
The results of my latest bone marrow biopsy still show evidence of the disease. Although there have been some positive developments since I began treatment late last spring (the number of cancerous blasts in my bone marrow has decreased from 30 to 3 percent), I worry that I will not be in total remission by the start date of my transplant. I am hoping that my current round of chemotherapy (Vorinostat and Vidaza — the Vicious V’s, as I call them — the drug combination that constitutes the clinical trial I have been doing since August) will get rid of these remaining blasts as well as multiple chromosomal abnormalities and deletions in my bone marrow. It’s those abnormalities that the transplant aims to eradicate with fresh donor cells.
Instead of focusing on the curative possibilities of the transplant, I find myself thinking about all that might go wrong. This is my only chance for a cure, but my transplant doctor’s words won’t stop ringing in my ears: “for someone with your medical profile, the transplant has a 40-50 percent chance of success.” Actually, “percentages” are not that predictive, given all the factors involved: my form of myelodysplastic syndrome (MDS), my reaction to the donor cells, complications that can occur during a transplant, and on and on. But I’m finding it difficult to feel optimistic about a live-saving procedure when the odds seem stacked against me — or at the very least, even.
My world of waiting is split between willful distraction and a morbid kind of myopia. I fluctuate between two extremes: wanting to pack in as many adventures and diversions into the next four weeks, and losing myself in thoughts and fears about the future.
How do you “suck the marrow out of life” when you’re counting down the days to a bone marrow transplant?
It’s difficult to imagine that in only one month, I’ll be on all the necessary medications for my transplant — the intensive chemotherapy and radiation, the antibiotics and anti-nausea pills, the immunosuppressants, and the rest. I’m confident in my doctors’ abilities, but I don’t have any prescriptions for the waiting. Just the journals I’m filling up, stacked next to my bed, and my greyhound dog calendar, a gift from a friend. Soon I’ll flip it over to April.
You can find more information on the bone marrow transplant process here.