Bad patient

Thursday, February 19th, 2004

The first thing was the phone-in diagnosis — yeah, it’s malignant. “You need to call your surgeon.”

The pathologist’s 2-year-old was screaming in the background. Sorry about that, the doc said, but there was no disguising the doctor’s distraction or, profoundly, her indifference, not to Sheri, as she gripped the receiver in disbelief.

She had just been told she had breast cancer.

Next!

No one is intentionally cruel to cancer patients, least of all members of the medical profession, but it seems to come out that way a lot, doesn’t it? My friend Sheri (she asked me not to use her real name) has recently emerged from her ordeal, which included a mastectomy, a round of chemo and, by God, James Taylor and Gustav Mahler and an argument with her anesthesiologist as she was about to be wheeled into surgery.

She beat the cancer, but she was angry and wanted to talk — about the emotional void and cookie-cutter treatment that too often accompanies a cancer diagnosis; and about the survival skills you need when they start trying to reduce your life to so much chemistry.

She describes herself, proudly, as a bad patient.

This is in contrast to “good patients,” who turn themselves over to their doctors, believe them unquestioningly and, often enough, in the words of Dr. Andrew Weil, die right on schedule.

What a bad patient does is insist on her humanity, which is so often inconvenient and counter to hospital protocol, but which is as crucial to the recovery process as cancer-cell-killing drugs and radiation. The techno-impersonal, assembly-line approach to cancer treatment, which ignores the state of a patient’s inner “healing climate” (as psychotherapist Lawrence LeShan puts it), is flat-out insane, says Sheri.

Cancer is a breakdown of the immune system, life’s great, sustaining mystery, and the prevalence in our society of diseases stemming from this breakdown is pushing many healers to look for answers beyond conventional science, into the unexplored frontier of mind-body-spirit. It’s called holistic medicine, and it looks at the whole person.

But you may not guess the whole person matters when a dreaded diagnosis plunges you willy-nilly into the multibillion-dollar cancer industry, which is often clueless about how to deliver qualities as simple as compassion and respect. For that, patients have to fend for themselves.

As a “bad patient,” Sheri did so doggedly and without embarrassment. And often enough she found it. As she went into surgery, for instance, she implored her doctors to operate with love, and one of them said, “We’re the two loviest guys in the hospital.”

This reassuring conversation took place in the pre-surgery prep room, shortly after Sheri had argued with the anesthesiologist.

Sheri, a musician and health-care professional, had programmed two CDs for her surgery — Mahler (sad, heavy strings) for the mastectomy, and James Taylor for the reconstructive surgery that would be done immediately afterward. And she had wanted her friend, an allergist and M.D., to be in the operating room to work the CD player.

The two surgeons had no problem with the arrangement, but the anesthesiologist smelled irregularity and nixed the plan, refusing to consider Sheri’s point of view or even look her in the eye.

Despite the life-threatening procedure she was about to undergo, she held her ground. She knew the doctor wasn’t listening and finally demanded to know, in exasperation, “Can you repeat what I’m saying?”

You said that? I was kind of knocked back myself, just hearing her recount the incident. Perhaps it helped that she’s the daughter of a surgeon and therefore had no reason to be intimidated by the medical profession. Still, wow.

In the end, there was a compromise — one of the surgeons agreed to work the CD. But after she took her stand (while lying prone on the gurney), she told me, “His students were standing there with big grins on their faces because they couldn’t talk to him the way I could.”

Cancer makes the fog lift. If you want to beat it, you have to step up to the brink of your life and demand to be heard.