by Susie Merz
There was no need for a particular celebration, but I noted the date, and the year. In May, ten years ago, I received a stem cell transplant to treat a diagnosis of multiple myeloma. Five years ago, I wrote a piece in which I referred to the treatment as a hideous procedure. Although it’s not something I would want to repeat, I do notice that time has somewhat softened the memory of that experience.
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What echoes more loudly from that time are the words of the doctor who told me that the expected survival rate for multiple myeloma is five to ten years. Even now I can feel her reluctance to say those words. I remember the pained look on her face, one of pity perhaps.
When given a cancer diagnosis, most people cannot help but wonder if it means the beginning of the end of their lives. Depending on the diagnosis, this can be true, but even with all the latest statistics and data at their fingertips, no doctor can ever know exactly how much time someone has left to live.
I know of people who seek out their prognoses from their doctors, or online, and use the information to motivate them to ‘beat the odds.’ I know others who choose not to ask the question. Unfortunately, I know folks who have been told, often very unskillfully, that they have x number of months or years to live, when they have NOT asked this question. As cancer patients we can never un-hear those words, the life-limiting numbers, the pronouncements about the possible end of our days.
At this ten-year mark, I feel very grateful to have survived this long. I know so many who did not have the luxury of ten years. And yet I am also aware that statistically I am heading toward the thinner end of the bell curve. I’m fifty-one now, and I have trouble imagining turning sixty. Thankfully, I know people who have been living with multiple myeloma for twelve or fifteen or even twenty years, so I know the possibility exists.
Do I wish I hadn’t been told those numbers? Sort of. But I had asked. At the time, I must have thought that the information would be helpful, that it would give me some control over what felt like the deck of cards of my life being thrown up in the air.
The doctor could have said she didn’t know, or that there are a wide range of possibilities about what might happen, or that it was too early in the process to tell.
These days, a couple of lines from a poem are what come to me when sadness or worry arises about the length of my life:
…A short life
doesn’t always equate to a life cut short.
A long life doesn’t always equate to a full one.
(Andrea Gibson, The Lifegiving Benefits of Befriending our Mortality)
My wish is to be present in my days as best I can, and not take any of them for granted.
May we all inhabit our precious days as best we can.
Susie Merz first came to Callanish as a retreat participant in 2015 and has been on the staff team for 8 years as a clinical counsellor.