Speak for Your Self

My sister had a right to be stubborn while facing terminal cancer — even if the rest of us disagreed with her choices.

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My sister spent the years from age nine to 18 in a Milwaukee brace; a leather and metal contraption used to correct scoliosis. She rode horses competitively throughout this time. In her forties, she came back to horses and through sheer grit, at age 50, made the United States Equestrian team. Fittingly, she broke records in the Endurance event, a grueling, 100-mile ride.

When she was diagnosed with ovarian cancer, she applied her singular intelligence, indomitable will and deep, fathomless skepticism to assessing what treatments were available. She was outraged that the care had not evolved much since our aunt died of the cancer 15 years before. There’s no money in this cancer, she said repeatedly. No motivation to innovate.

She was disgusted by the barbarism of the procedures and their terminology (“radical hysterectomy,” “de-bulking,”) and repulsed by the trade-offs, like a precipitous menopause, miserable collateral damages and increased risks of other diseases. She could speak at length about the toxicity of the recommended chemo drugs, the side-effects of every medication and the unfavorable odds for a limited menu of options.

She rejected almost all of them.

Everyone around her was enraged yet paralyzed by her prodigious knowledge (I heard more than one doctor ask my sister where she got her medical degree), and her determination to chart her own course.

This was not a new mindset for her. When our father faced his first cancer a few years before, my sister would say “That chemo’s going to kill him! It’s going to kill him faster than the cancer!”

It didn’t. Something—the chemo, the complementary therapies my once-skeptical dad suddenly embraced or even the alignment of the stars—saved him instead.

Just about every day of my sister’s illness, my dad would call me sad, frustrated and angry. “We have to get her into treatment!” he would vent. “Not treating this cancer is going to kill her!”

My dad was pretty sure what saved him was that he threw everything available at his illness: surgery, chemo, radiation, Reiki, Qi Gong, vitamins, meditation, you name it.

I was pretty sure the strongest element of his treatment had been his belief that it could save him. And I was also pretty sure that even if we could chloroform my sister and bundle her into the chemo ward, the treatments alone wouldn’t save her.

Setting aside the fact that it would really take chloroform to get her there, I believed that her unshakable certainty that these interventions would maim her might kill her faster than the cancer itself.

It’s not that he and I and a cast of thousands didn’t try to convince her otherwise. But in our daily conversation, I asked my dad to name a time when anyone ever convinced my sister of anything—politically, parentally, romantically or otherwise.

He couldn’t.

If you can’t have the right to self-determination when you are facing a terminal illness, I reasoned, then when? So I lay off the campaigning. Having cancer made her angry enough; having no support on her chosen path compounded the rage. I stopped taking up what time we had together trying to change her mind.

My sister was a ferocious being, one of the fiercest I have ever known, but cancer is a formidable adversary. Inside of two grueling, grinding years she was gone.

A week after she died, there was an article in the New York Times about a woman who was successfully treated for ovarian cancer. “My sisters took the reins out of my hands,” the woman said in the interview. She wasn’t going to pursue the correct treatment, but they convinced her.

I gripped my mantra a little tighter. Fish gotta swim. My sister was not that woman. My sister was not going to be convinced.

The mantra held up nicely, except for when I was stuck on the hamster wheel of self doubt (I should have tried harder/I couldn’t have tried harder). After two years, it’s still a common 3 am whirligig in my head.

More recently, I opened the paper to see an article describing key elements for successful treatment of ovarian cancer that were identified EIGHT YEARS AGO. The lead researcher, who shares my sister’s first name, said nothing can make a difference at this point other than patients who can really advocate for themselves.

The article profiled a woman who, in the picture accompanying the article, sits surrounded by family photos. She is, blessings on her vitality, my sister’s age.

She has my sister’s name, too.

Janet Reich Elsbach lives in the Berkshire hills of Western Massachusetts with her husband and three children. See more of her writing on Modern Loss and atA Raisin & A Porpoise.

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