A cancer survivor described the agony of making a life-or-death decision.
When I am asked about the hardest decision I ever made, I answer, “It was whether or not to have a bone marrow transplant (BMT).”
The need to make this decision came out of nowhere. I had myelodysplastic syndrome for 12 years. I had been told from my first appointment that a BMT would be a last resort. I went to my oncologist at a major research center after routine blood work. She told me that the blood work was alarming and showed two serious variants presenting their ugly heads. I was familiar with the concept because these were similar variants to those pesky ones that kept popping up after COVID-19 and the vaccine. These variants are lurking everywhere and can suddenly appear and make us very sick. They survived the first treatments — like a vaccine in the case of COVID-19 and chemotherapy in the case of cancer. These are even stronger than the first round and very dangerous. My oncologist explained I would be hospitalized for several months after the BMT; I would have to have someone in the home with me 24/7 for a year afterward; and would need to be driven to the clinic weekly. To make matters worse, the BMT had a 50% chance of working and may need to be repeated.
I asked why I should even consider it at the age of 72. Her honest answer was I would die without it, and this gave me a fighting chance. The clinic had recently changed the rules for giving it over the age of 70.
I honestly was in a daze and walked around like a zombie after that. Every single movement was a huge effort. I would go round and round like a merry-go-round in my head. Should I have it and give myself a chance, or not have it and live a normal life for a few more years? I asked why I could not wait until I was sicker, and she said that I would not be strong enough to have it.
Originally, I explained I was single and could not find anyone who would stay with me for a year. She stated I had friends who could trade off. I returned home and was told by friends and people from the church that they would stay with me and set up a schedule so I should not let that be a reason not to have it. When I would talk to friends, they would tell me that they wanted me around for a long time and to have it. Others were more cautious about the terrible side effects including fatigue, hair loss, diarrhea and vomiting, to name a few. Being bedridden and not able to do anything or go out for up to a year did not appeal to me either.
During this horrible time, I also lost my wonderful service dog of 14 years who had been by my side every minute. Could it get any worse?
I was also facing tremendous pressure from the clinic. They set up an appointment to meet with the BMT coordinator who told me emphatically I would be her only doctor from now on and had to quit going to my local oncologist. I could not have any treatments at the new cancer center where I had many friends who treated me. I had my DNA taken to find a match, was called about mentors to help me and sent a boatload of information. I had a friend who had two BMTs and strongly urged me to do it. My sister was more cautious about the side effects, and I continued to vacillate. My local oncologist then told me she was moving to Florida and would not be there to take care of me, anyway. The merry-go-round kept circling.
I lost chunks of time and continued to be in a daze. My sister flew in from out of state. We talked to the first oncologist and my sister pressured her how long I would live without it, and she said two years or so. I went back to my local oncologist, and she saw how distressed I was. She suggested I go to another research center close to the clinic and get a second opinion. I did that and the oncologist there was blunt. She looked at my records and told me that with my immune deficiency, my chances of it working were 35%, not 50%. She also cautioned that with a compromised immune system, I could die on the table.
It all clicked, and I made my decision. I wanted a least a year to live my wonderful life, and I had a book to finish. I decided to seize that year since it was certain I would lose a year getting better.
I returned to my oncologist at the clinic and was right back where I started. I told her I was not having the BMT.I did not want her to be mad, but I felt it was better to seize that year. She said she was not upset and that it was her job to play devil’s advocate and tell me what was out there. Meanwhile, another miracle drug had been approved by the FDA and we started that immediately. I told her life was a crap shoot anyway and we just had to roll with our decisions. Now, two years later I am still going strong, living my life, finishing up my book and doing as well as I can expect.
I am not writing this article on whether to have or not have a BMT. That is up to each person and many factors must be considered including general health, age, past medical history, social situations, support groups and on and on. I am aware my decision not to have it could have gone the other way and I would not be alive to write this article.
All of us have major decisions to make our entire lives, including what job to take, where to live, whether to marry, have children, accept a promotion, etc. Unfortunately, those of us with cancer have to make even harder ones, which are literally life or death. We decide with the information we have at the time. It is fruitless to ruminate and there is no right or wrong. There is now and we have to grab that and hold on for all it is worth.
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