In the summer of 2016 in seemingly good health, I was diagnosed with acute myeloid leukemia through a routine blood test and subsequent bone marrow biopsy. In 48 hours, I went from a carefree existence to a week-long, 24/7 chemotherapy drip and a 5 ½ week hospital stay.
Although my doctors described my treatment plan, in retrospect it’s remarkable how little I learned about my disease. This cancer is not “staged,” because it is so unpredictable, and there were no discussions of long-term prognosis, survival rates, or other such matters. For my part, I made a conscious decision not to surf the internet collecting all sorts of dubious, unverifiable information about my disease.
Instead, I simply trusted my doctors as we moved through my initial treatment one step at a time: induction chemotherapy, temporary remission, infection management, count recovery, and emerging molecular and cytogenic data on my cancer. Throughout this period, my doctors’ calm, professional demeanor provided reassurance that my disease was a problem they could solve.
It wasn’t until I was contemplating a stem cell transplant that I heard the first hard numbers and survival rates for consolidation chemotherapy versus a transplant. Even the best-case scenarios looked pretty grim, and it dawned on me that I was fortunate to have survived up to that point.
I proceeded to transplant, recovery and survival. As I got better, I gradually learned even more about the lethality of my disease. I now believe that it was for the best that I did not initially know all the dire things I eventually came to learn about AML. As it was, I could maintain a more hopeful outlook over my many months of treatment.
I don’t claim that this path is appropriate for every patient or disease. But I was struck to learn of some research on AML patients that is consistent with my story. In the webcast “Coping with the Emotional Side Effects of AML” (available at patientpower.info), Dr. Thomas LeBlanc reports on interview data from AML patients. Among the more striking findings is that the more accurately patients understood the likely outcomes of their disease, the more emotional distress and sadness they experienced.
I would never advocate that ignorance is bliss. But my experience — backed up by this exploratory research — suggests that just a little knowledge can be a good thing when it comes to surviving AML.