Thank God there wasn't much in the way of an internet when I was initially diagnosed. I don't know how it might have changed my attitude if I'd been able to some serious research, if I'd been able to pull up survival rates at will.
(From The Leukemia & Lymphoma Society: the overall five-year survival rate for all patients with acute and chronic leukemia is 44 percent. However, when you look at the type of leukemia that I had -- acute myelogenous -- the five-year survival rate is only 14%.)
Or maybe I would have been fortunate enough to stumble across Stephen Jay Gould's The Median Isn't The Message, validating what I'd felt from the very early stages, that survival rates are a highly personal thing.
It is a natural question to ask. When Dr. Gorst was patiently explaining the disease to me in Lancaster, I reached out for something solid. What are my odds? Numbers are facts. They are concrete. You can lash yourself to them to help weather the storm.
I remember Dr. Gorst telling me that leukemia had an 80% survival rate. I did not push back. I never asked for clarification: eighty percent of what? Survival for how long? Is this for all leukemias, or my particular sub-type? He may not have actually even given me those numbers, based on research I've done since.
Dr. Collins gave me a different number, later, when I'd asked her the same question in the middle of my first round of chemotherapy. She gave it some thought. She paused before answering. I was young, and fit, and strong, but it had been weeks since the last of the chemotherapy, and my body had still not shaken it off. My marrow was not recovering.
"I'm going to be completely honest with you, Robert," she said. I want to think that she held my hand, but I doubt that she did. At least not then. Let's say that she came close to my bed and half-stood, half-rested against the edge.
"You are asking me what I think your chances are, right?"
I nodded. I'd recently received some demoral. It helped with my many fevers, but it also made everything feel fuzzy. I rubbed my face with my right hand, starting at my forehead, a slow swipe down to my chin, lingering over the bridge of my nose. I wasn't sure if I could feel anything.
"You might hear many different numbers," she continued. "There is always some amount of debate going on, some different way to spin the numbers. But the numbers, ultimately, are meaningless. It boils down to fairly straightforward math.
"Your chances are not 20% or 50% or even 80%. You either survive or you don't. Period. Today you are surviving. Yesterday you did the same thing. Every day that you continue to survive you have a one hundred percent chance of survival. Your odds, your personal chances of survival, are at 100%.
"Does that make sense? Does that help?"
I nodded again. I still couldn't feel my face, so I checked again to see if it was still there.