We picked up the long-term disability forms from the Grand River Regional Cancer Centre yesterday morning. My medical oncologist graciously agreed to fill them in, describing the treatment regimen and the overall medical context.
I knew what it would say beforehand, but reading it in black and white and with an authoritative medical signature attached was a little tough - "incurable".
As I recover from surgery and get ready for chemotherapy, that word keeps popping up, as do thoughts and images of the implications for me and my family. Sometimes, when I'm especially feeling the injustice of the situation, I turn the clock back and wonder what I might have done or others might have done to achieve a different outcome. The feelings of anguish and thoughts of what might have been are heightened by reading (on the GRRCC's homepage) that 90% of colorectal cancer is curable if found at an early stage (only 10% of those with colorectal cancer are curable if found at an advanced stage).
This week, my father underwent a colonoscopy where 4 polyps were discovered and excised, all of them benign. At 77, that's an excellent outcome, especially knowing that he doesn't need another colonoscopy until age 80. And now that I've been diagnosed, my first degree family members have the option of being tested by a colonoscopy at age 40 and older (instead of waiting until age 50 and then being tested only by a fecal occult blood test - FOBT - every 2 years). A similar situation exists for my uncle, currently being tested with a colonoscopy every 2 years, during which they usually find a polyp or 2 that is excised during the procedure.
If, if, if, if - if I had been tested with a colonoscopy at age 40 and older, we would have found the cancer at a very early stage. Even if we had tested at age 50, instead of 53, the outcome for me might be very different.
Incurable. What if. Might have been. Therein lies a kind of madness.
Instead, in my better moments, I realize that we are all incurable, terminally ill, biding time till the grave. What sets me apart these days is knowledge, knowing with the precision of a certain number of months when I will die. Sure, I will attempt to beat those odds, make the months and days keep adding up, confounding the medical statistics and even the members of my own medical team. In fact, I'll be doing everything within my power to hold on and give back.
But knowledge is not only power, it is a gift. Knowing what to expect medically in the months ahead, what I can and cannot do, what will likely work and what probably won't work - when I concentrate on those things, I feel empowered and blessed. And to some extent those who love and care for me also feel the benefits of "knowing".
Yes, it is sad. But all of us in my circle of care also know that there is some time available to us. We will find and take advantage of moments that might otherwise slip by unexploited. Those hugs, kisses, holding hands, glances of simple affection; drives in the countryside, quick day trips, visits with family and friends, coffee and lemon poppy seed loaves, sometimes a glass of wine or beer; discussions of what matters most to us, enjoying family photo albums, making new photographs - all will occur as usual but with additional poignancy and a fuller investment of time, energy, consciousness, and appreciation.
And then there are the practical aspects. I am simplifying my life. As an avid reader, I have accumulated a multitude of books over the years which, when viewed as a series of collections, documents stages and phases of my life story. But now, as I set priorities and make plans, I am donating those collections to others. This feels good. My wife and I are also looking at simplifying other aspects of our lives, getting rid of clutter and noise, and becoming reacquainted with priorities and those things that don't really matter too much. In fact, we are learning how simple many decisions can be because of that one word - incurable.
As one of my good friends would remind me, we are rediscovering balance. Because there are no longer guarantees of decades and years ahead - only months - recalibrating balance in my life has to occur and is happening. This is good.
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