Sunday, June 5, 2016

On National Cancer Survivor's day, thinking of lives saved, friends lost

I didn't know it was National Cancer Survivor's Day until Barbara Shaw Sadowsky – a marathon survivor at 39 years – posted it on Facebook.

It's funny because I had just gone up to Spofford, N.H., yesterday to take a walk in the woods with a cousin (and Maddie) and the topic came up, as it often does, about my own marathon fight against leukemia. It was in reference to the changes in my hair that I wrote about in my essay. I told her I thought I looked funny in the French poodle hairdo. She said I had looked great and very alive.

When we were going over the timeline and I got to the point where I said my doctors said a certain great thing about me at the five-year-mark, I had to spell the word instead of saying it, C-U-R-E-D.

She said I sounded just like my mother when she spelled words out instead of saying them, just like me, out of fear of being jinxed.

There are so many times when I have felt like I needed to tread lightly. For example, when I twice hit the two-year-mark when my doctor said I could break out the Champagne, I marked the occasion quietly, having coffee with friends, so as not to send out a signal that I had too much hubris and deserved to be struck down.

At five years, my children took me out to dinner with a number five candle and a chorus of Happy Birthday, but we still didn't say the word. I can say, "They say I'm cured," but I can't say it myself.

My social worker said patients have all sorts of superstitions. One woman had had a good blood test when wearing the same pair of earrings and didn't want to risk changing them the next time.

This way of magical thinking actually sends feel-good signals to the brain, but if taken to extremes can turn problematical. I don't go crazy over it. I just won't say THAT word.

The road is filled with joy, but once you have entered what some called Cancerland it also contains landmines. People who you wouldn't have met if not for cancer die. Your eye catches the cause of death of a person just about your age and it is from "your" disease and it reawakens the shock of fear that you had when diagnosed It doesn't make sense, but there it is.

But let's dwell on the positive.

All the Dana-Farber doctors, nurses and staff, the friends and family who form our "caring circle," the advances in medicine which make it possible for some of us to survive when in the not-to-distant past we would not have,  the helping organizations such as Cancer Connection and individuals such as Dr. Jay Burton, also an AML survivor and the founder of Survivor Journeys, which addressed the lack of support groups locally for survivors of blood cancers, and, of course, the donors and Be The Match, without which we blood cancer survivors would not even spelling out THAT word.

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