When my oncologist first spoke these words to me, I had trouble with the inference that all I can do is ‘hope’ for the best. Why can’t I plan, practice, work, study, pray or do any of number of actionable things to shape my best outcome? Hope seemed like passive resignation to an abysmal end.
But he couldn’t have better distilled his Western medical strategy. And actually, his perspective has set the theme for my life in learning to live with my cancer prognosis. It’s not as if I took his words as sage advice and ran with them. It’s not that these words even consciously came to mind in any of the turns I’ve taken along the way. It’s really in retrospect that I’m realizing – Damn. Doc was right. This is what’s happening here. This is what I’m doing. I wonder if he even remembers kicking down that knowledge.
For me, living with a cancer prognosis means that the country’s leading lymphoma specialists (Lucky me. I’m serious.) have told me that there is X% chance that I have A to B number of years before the cancer returns. This also means that there is Y% chance that the cancer never comes back and that I will have disease free survival. For example, a prognosis could say that there is a 95% chance that a person has 3 to 4 years before recurrence, or it could say that there is an 80% chance that the person has 1 to 2 years before recurrence. I haven’t inserted my real numbers here on purpose.
Sharing my cancer prognosis is one of the most private pieces of information that I hold. It’s definitely not anything that I want to open up for outsider input. Unless you’re someone I love and you’re deeply involved in my life, I don’t want to tell you and you don’t need to know.
My prognosis was arrived at by linking my situation to the most relevant studies by considering a host of factors including my demographic profile, pre-cancer health status, initial presentation of cancer, stage of cancer at diagnosis, cancer treatments to date, my responsiveness to these treatments, and more. It’s a careful science incorporating many variables. But even though my prognosis is based on the closest studies that exist for my situation, close is a relative term, and some of the studies might not have any participants quite as gangster as I am.
And like Albert Einstein once said, “Not everything that can be counted counts, and not everything that counts can be counted.” So, what to do with these statistics?
The everyday reality of living with my prognosis often feels like I’m balancing in a high wire act, walking a tightrope that dares me to either skip across fast without looking down, or inch across slowly while taking in the scariness of my potential fall. Do I live life daringly and impulsively, or act with exceeding caution and sensitivity with each step?
“Prepare for the worst and hope for the best.”
So, maybe just make sure there’s a safety net below? I really don’t know.
I can also easily get caught up in the calculus of what the hell to do with the possible maximum and minimum number of breaths I have remaining – how best to spend the A to B number of healthy years that X% chance of cancer recurrence produces. It also means that I have to leave room for the Y% possibility that the cancer never comes back. So, even though balling out and leasing a fleet of Bentleys sounds pretty gangster, there’s a chance that I would outlive the lease and end up not dying from cancer at all, but trolling in financial debt instead.
Statistics are at every crossroads in my cancerous life, and I’ve learned from experience that there’s risk involved with every medical decision. The only thing that’s been helpful is to follow my own intuition in making decisions. By doing this, I take ownership of what lies ahead, and I can more readily accept the consequences whether good or bad. Even if I lose an organ or the ability to do something I once enjoyed. No room for blame. No going back.
I don’t want to waste life wondering about what if. I live in what is. Exactly how much life I have left is uncertain, but one thing is certain … my life is limited. Each moment demands to be lived for its own worth and appreciated.