Last month we spoke to nine doctors who had battled the same illnesses they studied in the lab or treated in the clinic. Their stories were inspiring, and illustrated the sometimes-fine line between work life and home life. Here we continue the discussion, asking them to share more about how their personal life informs their professional endeavors, for better and for worse.
Dr. Mark A. Lewis' inclination for helping others was passed down to him through the generations before him, at least metaphorically speaking. His father was a caregiver of sorts - a theologian whose healing line of work was deeply informative to the young Lewis. More literally, his father passed him down a genetic mutation that predisposed him to cancer. His father died of lung cancer, the result not of smoking, but of the rare mutation that underlies familial tumor syndrome, in the Lewises' case, Multiple Endocrine Neoplasia type 1 (MEN 1).
As a child, Lewis closely watched his father's doctors do their work. And while their efforts were ultimately fruitless, his wonder at their almost-magical treatments propelled him to medical school where he chose oncology as his trade. Lewis' own MEN 1 status was only revealed in his first year of oncology residency, as were the tumors already growing in his pancreas, where they still reside today, dormant, for now. Realizing that he and his father shared this familial form of cancer made his father's struggles make more sense in retrospect, and it continues to shape his relationships with medicine, his patients, and his own growing family.
But while Lewis' love of helping others was piqued by his early experience, his own journey into clinical medicine has led to a deeper understanding of healing. There are many ways to heal, he has found, and some patients consider themselves "fixed" when the medical community might not; the reverse is true, too.
"Experience has taught me," he says, "that there are many worthy goals besides cure, and that we shouldn't reflexively regard other outcomes as failures. Even the word 'cure' has a slippery definition. Does it mean being cancer-free for five years? Ten? Dying of a medical problem unrelated to cancer, even if cancer or its treatment hastened that death?"
Determining the success of a treatment is about as abstract as it comes, Lewis says. "We sometimes talk, imprecisely, about patients 'failing' treatment. There's an interesting reversal of blame in that phrasing. Surely if there's any blame to be placed, it's the treatment - or its prescriber - that fails the patient." On the other hand, a treatment can be deemed a "success" if it produces a reduction in tumor size that is only perceptible by x-ray. How is this successful, he wonders, if the patient feels no better as a result?
The potentially long-term psychological fallout from treatment, even those that annihilate cancer, is one of the reasons that "cure" is not straightforward. One of Lewis' greatest fears is that patients may be so "irrevocably traumatized by the treatment experience that they will not be able to enjoy life there after. A remission plagued by constant anxiety about a cancer's relapse is a Pyrrhic victory indeed."
Truly humbling to him are the cases in which patients consider themselves the most healed when Lewis has "done the least," medically. Sometimes it is the emotional support, the discussions of mortality, and the ability to prepare for the end of life that benefits patients above all.
For Lewis, professional life and personal life are not so separable as they once were. He's been vocal about the difficulty in experiencing the emotions of both worlds simultaneously. For instance, at almost the precise moment his daughter was born, he lost a young patient - a mother, no less - to cancer. That day forced a realization that the two worlds were inextricably entangled, and this, he says, is the way it should be for any doctor worth his salt.
"Then that awful, wonderful day," he recalls, "with its tumult of feelings and obligations, proved to me that the barrier was permeable. The horrors encountered in my job were not so easily contained, and they could coincide with my most precious joys...Never before had I experienced such extreme feelings at the same time, and the dissonance was unsettling."
Experiencing the wild spectrum of life and death emotions is no easy assignment -- but these "mortal struggles" are what called Lewis to his specialty in the first place, and they are what keep him there. Not experiencing them is what he fears for himself most of all.
In the end, healing remains a knotty concept, and perhaps that's as it should be. "The truth is that healing occurs in many ways that defy quantification," he concludes. All of the roles doctors play -- caregiver, parent, patient, spouse -- inform and augment one another, and, he says, "they cannot -- should not -- be held apart."
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