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Mastering the Art of Living Uncertainly With Cancer

Certainty takes on a whole new meaning when you are living with cancer.
When I was diagnosed with a rare leukemia eight years ago, I struggled with anxiety for about a year, despite a good prognosis. In fact, it was better than good. Generally well-managed with medication, chronic myelogenous leukemia (CML) is a blood cancer that most people live with until they die from something else.
Still, I couldn’t get past the scariness of it all: invasive tests, weekly cancer clinic visits, the fact that I swallowed a bit of chemo every day. Every piece of my new normal scared the crap out of me and I kept waiting for the fear to be less. Yet every morning when I opened my eyes, my stomach would tighten and, as a terrible feeling of dread neatly settled on me, I would wonder, like I did every day, how I would make it through the day.
“A high-functioning anxiety case” is how my doctor would jokingly classify me, when, in one breath, I would describe the fear and worry that weighed heavy on me, and then in the next, talk about how busy I was, as a mom, a writer and the founder of a nonprofit group for people living with leukemia. It was true. I was doing a lot, despite my anxiety. Media interviews about the patient experience, speaking to health care providers about what it means to live with cancer – I even began writing a book about how to live well with CML. I essentially took everything that I feared and wrapped myself in it, like a cloak.
The result was that I spent an inordinate amount of time thinking and talking about illness and death and the sweet uncertainty of life. But it was hard.
It seemed that I had embraced the uncertainties of life, but as my anxiety continued, it became clear that I had not accepted them.
I joined a cognitive behavior therapy group, which was appropriately called, “Courage.” The idea was to examine your fears and anxieties, understand them and change your thoughts about them in order to be happier. Finally, I’d figure out why I was so scared when my prognosis was so good and I’d move on, grab the reins of my new normal and ride off into the sunset. It sounded amazing.
Lora was the leader of the group, a passionate psychologist, about 40, who genuinely cared, but also didn’t fool around. In her class, you were going to face your fears and deal with them. There were many tears in these sessions, which was weird at first, but we all became friends, joined by the fears that were holding us back and preventing us from truly living.

Talk about this article with other patients, caregivers, and advocates in the General Psychosocial Aspect Topics CURE discussion group.
Lisa Machado is the founder of the Canadian CML Network (cmlnetwork.ca), a national patient support organization based in Toronto, Ontario, Canada. She has been living with chronic myeloid leukemia since 2008. She can be reached at info@cmlnetwork.ca.
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