Dr. Gilsdorf's Season in Hell

Dr. Gilsdorf's Season in Hell

About 15 years ago, pediatrician Janet Gilsdorf began writing to express the extraordinary things she witnesses while caring for very sick children. Since then, Janet Gilsdorf, M.D., and Janet Gilsdorf, writer, have come together enough times that her CV includes a “Medical Creative Writing” section. She regularly publishes essays in medical journals and also writes fiction. Nothing she’s written, however, has attracted the amount of attention of her first book, published last fall. Again the topic is serious illness, but this time it’s her own: breast cancer.

In 2000, on Valentine’s Day, a lump was discovered in Gilsdorf’s left breast, plummeting her into what she calls “the three hells” of surgery, chemotherapy, and radiation. The arduous year that followed is recounted in Inside/Outside: A Physician’s Journey with Breast Cancer.

Gilsdorf received her treatment right at the University of Michigan, where since 1982 she’s cared for patients, trained medical students (as a professor of pediatrics and communicable diseases), run staff meetings (as director of pediatric infectious diseases at Mott Children’s Hospital), and enjoyed the professional camaraderie of her colleagues. She also has a leg in the School of Public Health, as professor of epidemiology and co-director of the Center for Molecular and Clinical Epidemiology of Infectious Diseases (MAC-EPID), where she carries out research on Haemophilus influenzae, a bacterium that causes ear and sinus infections in children and lung infections in adults. Long familiar with the health system from the vantage point of a doctor and faculty member, in 2000 Gilsdorf was on the other side.

“I thought I had a story to tell,” says Gilsdorf, “from a perspective not everyone has.”

After the book came out last October, Gilsdorf hit the author’s circuit of readings, book signings, and interviews. The story of a doctor confronting breast cancer clearly resonated with readers; some people told Gilsdorf they’d bought a copy for every woman in their families. The response is a testament to Gilsdorf’s writing as well as a sober indication of how many lives are upended by the disease. According to the American Cancer Society, more than two million women living in the United States have been treated for breast cancer. The chance of a woman having invasive breast cancer some time in her life is about one in eight; the chance of dying from breast cancer is about one in 33.

Those statistics translate into a lot of people who can relate to the cruel paradox, described unsparingly in Inside/Outside, of almost killing oneself to kill the disease. But everyone’s cancer experience is unique, and Gilsdorf’s eye for detail marks her journey as distinctly hers. There is the orange mixing bowl that’s constantly by her side during the bleary, vomiting days following each chemo infusion. There are the games of solitaire that occupy her in the long, restless afternoons. There is the unlikely solace found in catalog shopping for a “cancer wardrobe”—comfortable tops and pants to wear during chemo, replacing the long skirts she’d always worn, even while canoeing. Looking through catalogs, Gilsdorf dwells on the models, “slender, active women who seem to live exciting, fun lives. In addition, the models have two intact breasts and, apparently, not a care in the world. . . . Maybe if I look like them, I can be them.”

Her account never flinches, even when her own place of employment comes off poorly. In one passage, she silently fumes at a pathologist who biopsies her lump without anesthetic and without introducing himself:

“Wait, I scream to myself. Wait a goddamn minute. Who is this guy?. . . He might be the janitor or the parking lot attendant for all I know. . . . This jerk just jammed a needle into my breast without telling me who he is.”

At that moment, Gilsdorf is mad and in pain, but she knows confronting him isn’t wise, because when she’s the physician she doesn’t perform well under accusation. “Right now,” Gilsdorf writes, “I need this pathologist to do his best with his biopsy. Even more than knowing who he is, I need him to get a decent sample. So I lie here, wordless, waiting for it to be over, waiting for him to go away.” Before he does, though, he jabs her four times. “Tears puddle in the corners of my eyes and run down my temples into my ears. Have I ever failed to introduce myself to a patient? I surely hope not. Next time I take care of patients, I’ll introduce myself twice to be sure I haven’t forgotten.”

Within a year she was taking care of patients again, more mindful than ever of the small things that doctors can easily forget but that mean so much in the exam room—saying hello, making eye contact, apologizing for delays.

Today, Gilsdorf remains cancer-free. Her thick, blond hair has returned, and she’s fully resumed her work life, including research on Haemophilus influenzae. A certain strain of the bacterium was once a major cause of meningitis, which is sometimes fatal. Now that a vaccine prevents that disease, her research focuses on another strain of the bacterium that causes ear, sinus and lung infections—less serious afflictions than meningitis but far more common, requiring more doctor visits and resulting in many missed days of school and work.

In Inside/Outside, Gilsdorf writes movingly of telling her MAC-EPID colleagues—Betsy Foxman, the center’s director and professor of epidemiology, and Carl Marrs, associate professor of epidemiology—that she has cancer. After hearing the news, they hug her for the first time. “I have never felt their bodies before now,” Gilsdorf writes. “In our work, we touch each other academically, intellectually, creatively, but never physically.”

It was an emotional moment, Foxman says, and reading about it years later was emotional all over again. “She writes beautifully, and the book vividly brought all that back,” says Foxman. Reading the book, Foxman learned things she never knew about Gilsdorf, despite 20 years of professional association and friendship. Particularly, she gained an appreciation of how cancer changed Gilsdorf, everything from how she dressed (the cancer wardrobe is now her everyday style) to how she perceived herself—the book recounts a sabbatical Gilsdorf took in Monterey, California, and a trip to Kazakhstan, feats she doesn’t think she would have attempted if not for coming through cancer.

Foxman met Gilsdorf around 1984, at a faculty women’s international cooking group. When Foxman was forming MAC-EPID in the late 1990s, Gilsdorf was one of the first people she asked to join in.

“She brings a clinical perspective, and that’s important,” Foxman says. “I wanted to get a wide, diverse group of individuals who were interested in infectious diseases. And personally, I adore Janet, so that made it obvious to ask her to take part. She’s a wonderful scientist and a wonderful person; it was a no-brainer.”

Both Foxman and Marrs are happy to toot Gilsdorf’s horn for her.

“In her book, it does not come across that she is considered one of the world’s experts on Haemophilus influenzae and on the clinical aspects of meningitis infections,” Marrs says. “I’ve been in her office talking about some lab experiment when she’ll get a phone call that could be from anywhere in the world from someone asking her advice on something.” She also sits on the board of the Infectious Diseases Society of America, and is a member of the federal Advisory Committee on Immunization Practices, which made recommendations about Gardasil, the cervical cancer vaccine approved last year by the Food and Drug Administration (see related article).

Marrs praised Inside/Outside for exploring the range of emotions triggered by a serious illness and for its trenchant message to doctors: there but for the love of God go you. “That’s the bottom line of the book, as far as I can tell,” Marrs says, “for physicians and medical professionals to treat patients like people.”

After returning to work, Gilsdorf published an essay about her illness in the Journal of the American Medical Association. Written in the third-person voice of a doctor with breast cancer, the essay is part love letter to her profession, part lamentation about the “cancer patient” status conferred by her bald head: “This is an awful, very public assault to her identity, a crushing diminution of her individuality.” Waiting for a blood draw, she feels alienated from the other patients in the chairs and longs to talk with the physicians walking by. “Being here, on the patient side, feels all wrong to her.”

The essay caught the eye of Howard Markel, who edits the Conversations in Medicine and Society series at the UM Press. Gilsdorf and Markel have been colleagues for years—like Gilsdorf, Markel is a doctor and professor of pediatrics and communicable diseases; he also is a professor of health management and policy in SPH and a medical historian. He understands Gilsdorf’s compulsion to write in order to make sense of things; he does the same. At lunch one day, Gilsdorf mentioned to Markel that she was working on a novel. Markel encouraged her to instead expand her essay into a book.

“I said to her, ‘The real story is you,’ ” Markel says. “I thought it would be a compelling story not just for other women with breast cancer, but also for physicians who don’t really understand what it’s like to be on the other side of the stethoscope.”

He sees a public health dimension to Gilsdorf’s book as well. Because a single diagnosis of breast cancer affects not only the women diagnosed but all their loved ones, “very quickly you go from the individual to the larger population,” Markel says. He doesn’t draw stark distinctions between medicine and public health, though; in his view, it’s all a continuum for addressing issues of health and disease. In that regard, he says, Gilsdorf “has a very important and valid message to give to individuals and to policymakers, if they’re willing to listen. If all of us are willing to listen.”

At first, Gilsdorf was hesitant to write a book and relive her cancer year. Did she really want to take on a project like that? She decided she did, to try to forge such a profound experience into words. It helped that she’d kept a journal during the ordeal, and having a book contract from the get-go didn’t hurt, either. “I wish I could be as motivated for other things,” she jokes. She’s equally wry when noting that she didn’t want her photo on the cover or the words “breast cancer” in the title; she preferred simply “cancer,” because cancer is a battle regardless of its location. The result? Her photo is on the cover and “breast cancer” is in the title. She rolls her eyes a little at this, as if to say, what can you do about marketing?

Still, she did feel particularly galled to have a woman’s disease. A photo on her office shelf provides some explanation: in the 1968 class of about three-dozen students at the University of North Dakota Medical School, she is the sole woman. Her blonde hair, enormous shirt bow, and nyloned legs leap out from the sea of dark suits and ties. “I lived much of my life as a woman in a man’s world, a lady doctor in the male-dominated universe of medicine,” she writes in Inside/Outside.

“. . . It’s cruel to have cancer but, for me, far crueler to have a woman’s cancer. In our society, womanly things are undervalued, overlooked, ridiculed. I don’t want to carry the stain of a woman’s illness, too.”

Whatever words or photos appear on the cover of the book, what’s in it matters far more. “I’ve become a better writer in having done this book,” Gilsdorf says. Writing the first draft, she was still the patient. On the second draft, she became the writer. The woman in the book became more like a character—albeit, one she knew very well— and her focus shifted to writerly concerns of shape, structure, and obsessing over words.

Her efforts pay off, among other ways, in the vivid similes that pepper the book: Trying to relax in a bath, she can’t stop her mind from flitting “from thought to thought like an anxious wren.”

In another passage, Gilsdorf learns that a lymph node has tested positive, consigning her to a far more harrowing course of treatment than she’d hoped: “I see sinister-looking cells decorated with knobs and baubles to which velvety estrogen and progesterone molecules dock. Angio-lymphatic invasion. I see cells sporting deep purple nucleoli meandering into the walls of my blood vessels. Like an ugly oil spill, they ooze between normal cells, relentlessly forging uncharted trails into my healthy tissues.”

During her illness, her medical knowledge proved a mixed blessing. On one hand, she wasn’t afraid of needles or hospital equipment, and medical terms needed no explaining. On the other hand, she knew exactly how bad things could get. Gilsdorf also understands, as a medical practitioner and public health researcher, the aggregate nature of statistics—they tell you something about the group but little about the individual—but this didn’t make the decisions she faced about her treatment any easier. Should she choose a less taxing surgery that has a five percent chance of giving wrong information? Her doctor’s brain tells her that the difference between a 60 percent and 62 percent survival rate is statistically negligible, but might her fate—the singular fate of Janet R. Gilsdorf, child of Fargo, North Dakota; current resident of Ann Arbor, Michigan; doctor; scientist; wife; mother; writer; classical-music devotee; knitter—rest in that meager two percent? Gilsdorf worried about these decisions as much as any patient.

“For cancer, these treatments are based on large groups of people, yet I’m the one who dealt with all the side effects shown in the big picture of things,” Gilsdorf says. “Whether a treatment would benefit me, I had no way of knowing. It really swings both ways—what we do on an individual basis affects the large group, and what we do in a large group comes home to roost in the lap of an individual patient. Going through my cancer, I was very aware of that.”

Her awareness was matched, if not exceeded, by that of her husband, Jim, a general surgeon whose practice, as it happens, involves a substantial number of breast cancer patients. Over the years he’s sat down with countless husbands of newly diagnosed women and counseled them on what to expect. In 2000, he was on that road himself.

“It hit me a lot harder than I thought it would, at times,” he says, “particularly early on, because of knowing how often this can turn absolutely awful. That was really the hard part. I know that even the least little cancer can be devastating.”

As Gilsdorf recounts in her book, after her gynecologist discovers the lump, she asks her husband to take a look. In their bedroom, he examines his wife’s breasts, then straightens and says, “If you were in my office, I’d put a needle in it.” Only later, after the positive biopsy, does he tell her that he knew right away that it was cancer.

“The first time I felt it, I thought, ‘Oh shit, here we go,’” Jim Gilsdorf says now. “That was a palpable lump; you really know quite well by feeling it.” But he didn’t want to say anything until a biopsy confirmed his dread or, preferably, proved him wrong.

As Gilsdorf writes, she initially wants him to do the biopsy; he’s not only an expert, but the person she trusts most in the world. They decide, though, that it would be too terrible if he had to deliver a positive result. Or to put Jim Gilsdorf’s response the way he recalls it: “No freaking way! I’m not going to be the guy to tell you you have cancer, just no way.”

While pleased with the success of his wife’s book, he hasn’t read the final version. “I don’t particularly care to read it,” he says, “because it’s not something I want to do again.” He does, however, bring his personal experience to the conversations he has now with husbands and partners of women with breast cancer.

“A lot of woman try to protect their spouses,” he says. “Now I have the ammunition to say that I want to talk to him because I’ve been through it and know what he needs to know.”

Today, Gilsdorf considers herself a woman who had cancer. The knowledge that it can return tints her view of the world, but life is too full—work, Jim, two grown sons (Dan in Oregon, Joe in Texas), writing, travel—to dwell on it. She’s resumed her full schedule of clinical work and is back at her public health lab, looking for genes associated with middle ear infections in children. She’s also back at work on a novel that centers on a family with a severely ill baby, a dilemma she’s been in the thick of many times, one that moved her, years ago, to first put words to paper.

“I’m so in awe of the uniqueness of the families and how they deal with their situations,” Gilsdorf says. “I love to see that, and to see the child growing up in the cocoon of their parents’ interests and talents.” That’s as true today as it ever was, one thing cancer hasn’t changed.

By Mary Jean Babic, a freelance writer in Brooklyn, New York.

Photos by Peter Smith.

Send correspondence about this or any Findings article to the editor at sph.findings@umich.edu. You will be contacted if your letter is considered for publication.

Dr. Gilsdorf

Her doctor’s brain tells her that the difference between a 60 percent and 62 percent survival rate is statistically negligible, but might her fate—the singular fate of Janet R. Gilsdorf, child of Fargo, North Dakota; current resident of Ann Arbor, Michigan; doctor; scientist; wife; mother; writer; classical-music devotee; knitter—rest in that meager two percent?