[2023-05-25] Empathy and CA125
In a CBC story about a recent interview with Michael J. Fox, we learn why the Canadian actor and activist agreed to be in a documentary (STILL: A Michael J. Fox Movie) about his career and life with Parkinson's:
Fox believes sharing his Parkinson's diagnosis publicly has helped create a wider awareness around the disease and its symptoms. He hopes that has resulted in people having more empathy for those living with the disease.
As someone who has shared her own journey, I related to Fox's goal of raising awareness about a disease. But I was particularly struck by his additional motivation of increasing people's empathy for those with Parkinson's.
While I've never been one to say, "Oh, you haven't had cancer, so you don't get it," I do think that there are some aspects of cancer that one never truly understands unless one has been through it, or something equally serious. In How to talk to someone who has cancer, I quoted a cancer survivor who said:
"once you’ve been diagnosed it never leaves you, even after active treatment has finished every headache is a potential brain tumour, every ache is potentially bone cancer, every cough… lung cancer, the anxiety never leaves us, people don’t understand the mental health aspect of cancer unless they’ve experienced it first hand, and that’s fine, but we’re not being hypochondriacs, we’re not being drama queens and we keep a hell of a lot to ourselves because we don’t want to keep 'going on about it.'"
This person aptly captures the anxiety that those of us with cancer face as we wonder about every possible sign of recurring cancer (is it normal that I have to get up twice a night to pee?), await every new test result (is a 9 on my CA125 the beginning of a new upward trend?) and fret over delays in treatment (will I develop breast cancer before I reach the front of a seemingly inert queue for prophylactic surgery?).
When I received the 9 on my April CA125 test, I felt a little glum. It was the same way I felt after getting my first 8 following a string of 7s. "What does this mean?" I asked myself. I couldn't wait for the May test when I could see where the number would go.
I was thrilled when I saw today's 8. "I'm not on an upward trend," I thought. "I'm stable." This feels like a big deal to me. I did a little dance around my kitchen.
In the CBC interview, Michael J. Fox tells interviewer Harry Forestell, who is also living with Parkinson's, that his doctor had said to him: "You don't win this, you lose." Fox decided that if he was going to cope with the disease, he was going to learn how to lose well.
Thanks to today's 8, I feel like I'm winning against ovarian cancer. Who knows what next month's CA125 test will bring. But, in the meantime, it's back to the future.
