Laurie's story... A paradigm in need of change
"Why listen to me?" someone asks in a medical forum. I've been thinking a lot about this lately.
A few weeks ago, my brother-in-law and I took my sister Katie to a new oncologist for late-stage kidney cancer. It's a long story, but her time had run out, and being only 39 with young kids still at home, she was understandably not ready to quit. She decided to seek a last-ditch chemo treatment in a town closer than where she'd been getting care for the past six years.
I sat in the lobby and waited until she and my brother-in-law came out from the appointment with the new doctor. They told me they should have come here years ago—this doctor gave them hope—he was upbeat. Then my brother-in-law said the doctor's great idea was to enroll her in a clinical trial.
“Clinical trial?” I said, “no wonder he was upbeat," but then held my tongue because I didn't want to kill their hope. Who am I, anyway, besides someone with a chip on her shoulder because I think some really bad things happened to me while being prescribed medications over 18 years? I was certainly not someone to listen to when it came to my sister's life -and-death situation. Not, say, like a doctor.
As soon as we returned home, my brother-in-law called their local doctor and sure enough, he was told exactly what I had been thinking: that they had been given false hope and what the other doctor appeared to be after was a "warm body" for a clinical trial.
A few days later as we helplessly watched Katie dying, 60 Minutes came on television with a story about a miraculous cure for cancer. The polio virus is injected into a tumor and this kicks the immune system into action. People with brain cancer are said to be cured, and tests are underway for other types of cancer. The hot-shot doctor at Duke University even sees his patients while wearing a sweatshirt and jeans, the reporter says, because when you have that much clout, you can wear whatever you want.
Maybe it was because I was already grieving, I just wanted to take the doctor (in sweatshirt and jeans) by the neck and choke the living sh*t out of him. Ever since my sister's life had been saved six years earlier with Interluken 2, the cancer drug that stopped her stage 4 kidney cancer in its tracks, (she had even been proclaimed cancer-free at one point), I had been telling her that in order to stay well, she must also think of her food as medicine. I told her things like, "cut back on sugar and processed foods," and "fresh fruits and especially green vegetables can help keep your cancer at bay."
I told her this - but her doctors did not. And good patient that she was, she did exactly as the doctors told her to do. If good nutrition or exercise had been seriously advised by any of them, she would have done it. Of course, they had more important matters on their minds...like tackling her cancer with expensive state-of-the-art treatments involving surgery and drugs.
How many doctors have their entire identities constructed around the prestige of being a physician, the god-like authority of practising professional medicine, and the clout that lets you do your rounds in a sweatshirt and jeans because you're just that goddamn special? Meanwhile, radiology departments keep offering sugar cookies to their good patients while someone who suggests augmenting state-of-the-art treatments with careful nutrition ends up witnessing a tragedy the big-wigs rarely have to: the failure of medications to relieve her sister's pain in her final, excruciating hours.
I can't be the only one who believes this paradigm needs to change.