When Alex Trebek announced Wednesday, March 6, that he has stage 4 pancreatic cancer, he asked his viewers, along with his family and friends, to help him survive the disease.
“I’m going to fight this,” he said. “Keep the faith, and we’ll win. We’ll get it done.”
It’s the sort of language we frequently hear used around cancer — fight, battle, defeat, win, lose — and it doesn’t sit well with some families whose lives have been forever changed by the disease.
Chicagoan Sheila Quirke’s 4-year-old daughter, Donna, died from cancer. So did Quirke’s mom and dad. Quirke traveled to Washington, D.C., last spring with her son, Jay, to lobby for more pediatric cancer research.
When cancer springs into our national conversations — as it did when Trebek announced his diagnosis, as it did when John McCain announced his diagnosis, as it does when any household name announces a diagnosis — Quirke advocates for a different set of words around the disease.
“I don’t understand the war metaphors and how they came to be attached to people given a diagnosis of cancer,” she sais. “It assumes a modicum of control, which is false.”
A few hours earlier, she had tweeted: “I wish the best for Alex, a man of great charm and presence. With his news, shared so graciously, I am struck, yet again, by the language in which we speak of cancer and its treatment. ‘Beating’ and ‘winning,’ applied to disease, frames death as losing. We need better words.”
I asked her to help me understand why win and lose aren’t the right ones.
“If one fights hard enough, they win,” she said. “If they lose, despite how valiantly they may have battled or fought, there is an air of weakness, failing, fault. If one loses, are they not a loser? Is that not how it works in war and other battles? There is a winner and a loser.
“People who die from their cancer diagnosis are not weak, have not lost, are not losers,” she continued. “People who survive their cancer diagnosis are not winners who beat a mighty foe.”
Survivors, she said, have cells that responded to treatment and intervention.
“That is a hopeful and wonderful and sometimes mysterious thing, but does it make them stronger, more deserving or victorious than those whose cells did not respond in a preferred way?” she said. “No, it makes them lucky. I wish every cancer patient had cells that responded to available treatments. Sadly, it doesn’t work that way.”
I asked her why the language matters.
“I struggle with this question. As who am I, rife with my baggage and bias, to say that if Alex Trebek or other cancer patients want to — need to — think of themselves as warriors in an epic cellular battle, they should not?” she said.
Early in Donna’s treatment, Quirke said she took a battle approach.
“I, myself, took to calling her a warrior,” she said. “I needed to see her that way. I needed to believe she had superpowers that could defeat what was happening inside her body. It was my projection onto her that reassured me she would survive her cancer.
“Then one day, after some procedure or other, seeing her so vulnerable and just, tiny, I realized she was no warrior. She was a little girl being treated for cancer that did not seem to be responding to anything,” she continued. “I could see her for who she was, not who I needed her to be. She fought no battle, she had no weapons, she did not lose.”
The truest words, Quirke said, are that Donna, like Quirke’s mom and dad, was diagnosed with a cancer that did not respond to treatment.
“Or, more accurately, did not have a cancer type that was well enough understood by researchers to have a protocol to treat it,” she said. “Because of that, they died. No heroic and damaging language necessary.”
She winced, she said, when President Barack Obama tweeted support for McCain and said that if anyone could beat the disease, the former prisoner of war could.
“The war metaphor serves survivors, but not those who die from their cancer diagnosis, nor those who love them,” she said. “And when we see it used in the media, on social media and elsewhere, the words sting. There has to be a way to speak of cancer without the loaded verbiage of winners and losers, battles and fights.”
Contact Heidi Stevens at firstname.lastname@example.org, or on Twitter: @heidistevens13. Join the Heidi Stevens Balancing Act Facebook group, where she hosts live chats every Wednesday at noon.