In 2013, a Harvard University obituary for Dr. Jane Weeks described “a prominent researcher at Dana-Farber Cancer Institute, internationally known for building the discipline of outcomes research in oncology.” Cause of death was reported vaguely as “...after a long illness.” A Boston Globe article specified “cancer” and suggested a fairly rapid course: “Almost a year ago, when she suddenly found herself with one foot on each side of the physician-cancer patient divide....” What's the story?
Weeks discovered her breast cancer and kept it secret for six years. She even hid her illness from her husband Barrett Rollins, MD, PhD, Harvard's Linde Family Professor of Medicine and Faculty Dean for Oncology at Dana-Farber Cancer Institute. A bleeding episode at home forced Weeks to reveal the real reason she had moved to a separate bedroom: a growing breast mass invading the skin. She demanded Rollins never talk of it to her again and not tell anyone. He dutifully abided.
Four years later, Weeks collapsed at work and landed in the ICU, where an oncologist first became involved in her care. Throughout that hospitalization and while caring for her throughout her final year at home, Rollins went through contortions to stanch the information leak. Now, almost a decade after her death, Rollins spills everything in his tell-all, In Sickness: A Memoir
. Motivated by a belief that “Our story is important enough, moving enough, and human enough to be shared with others,” he details how two renowned oncologists kept her cancer secret despite her progressive symptoms and football-sized lesion.
A bizarre story from beginning to end, the book opens with the drama of her collapse and resuscitation. Rollins artfully weaves flashbacks of their 30-year marriage and respective careers into a riveting chronology of illness. It's a love story defined by his willingness to adapt to her “quirky behaviors”—an understatement if I ever heard one—and collusion in hiding her illness.
Putting aside the question of why Rollins wrote the book, the stranger-than-fiction memoir can be read as a teaching case about patients who keep secrets. I won't hazard a guess how many people, like Weeks, suffer debilitating fear of treatment that leads to a lifetime of avoiding doctors. The cautionary tales are that many people—including healthcare professionals—harbor fears (of tests, treatment, disrupting work or school, upsetting loved ones, or financial ruin) that lead them to ignore, deny, or hide symptoms, if only for a while. And that well-educated people can miss obvious signs of disease in loved ones.
Besides fear, other explanations for secrets include concern for others. Weeks was famous, literally, for her devotion to her mentees. Many patients are similarly dedicated to family. For some, a desire to protect loved ones from the practical and emotional burdens of the illness makes nondisclosure look noble. Fortified by the power of purpose, those patients endure physical and emotional wounds of cancer silently and secretly.
Complicating matters, patients' secrets may reflect a tangle of altruism and selfishness. Weeks' identity was enwrapped in her professional roles. Unwilling to relinquish any power at the Center she'd founded, she chose to preserve her public persona at whatever cost. Such behavior, while extreme, illustrates a common dynamic.
After a cancer diagnosis, patients contend with two desires: 1) to survive and 2) to maintain their public persona (i.e., the social façade that helps them navigate challenges and relationships). To achieve the optimal medical outcome, patients need to check their public persona at the exam room door, baring themselves both physically and with truths they prefer keeping private.
Confiding about habits, family dynamics, and sex can spark inner turmoil. Patients may feel mortified by things you wouldn't think twice about, such as dentures on full display on their hospital tray. I sympathize with their discomfort. Surely I'm not the only patient who feels self-conscious or dispirited, if only briefly, after doctor visits where I cried, asked questions that might sound trivial, or confided thoughts or feelings that I'd never share in social or professional settings.
Patients' denial of symptoms makes sense if perceived as part of their efforts—conscious or not—to maintain their public persona. Striving to continue pre-cancer roles may explain patients' unreasonable demands on the healthcare team and loved ones.
For all the insights about patients' struggles, Rollins' memoir focuses on the fallout of secrets on caregivers. In Chapter 1, Rollins talked to the ER doctor after Weeks' resuscitation. Shaken by the crisis, he struggled to appear calm and lovingly devoted to his wife while his insides churned with negative emotions—embarrassment, anger, shame, self-doubt, self-blame, self-pity—all the result of “an old, ill-considered promise to Jane.”
After Weeks' discharge, Rollins finally gets her settled in bed at home. Surveying the room and overwhelmed by his changed world, he laments that “because Jane chose secrecy and silence, she gave us no opportunity to plan together, to anticipate untoward events, to be ready for the illness we were now facing and the burden of her debility.” It's a convincing argument to share with patients who believe hiding their illness will protect their loved ones.
In a book filled with shocking narrative, Rollins' recounting of clinicians' responses stands out for their normalcy. Picture this: Rollins almost fainted at his first glimpse of Weeks' grotesque tumor, while the surgeon “assessed the tumor without betraying a hint of shock or disgust.” For Rollins, “Watching her quiet competence...gave me a way of looking objectively at the cancer without objectifying Jane.” That image of a physician's equanimity validates and elevates the healing power of professionalism and compassion.
I recommend In Sickness despite the discomfiting voyeuristic aspects. The story brings needed attention to issues of public persona in patient care. As sidebars, the book offers insights on mentoring in academics and the backstory of a founder of the field of outcomes research in oncology. This bizarre story provides a powerful reminder that judgment-free compassion helps patients and their caregivers under any circumstance—and not just when patients keep secrets.