When she learned she had advanced ovarian cancer, the feminist scholar Susan Gubar felt a “sense of liberation” that was almost euphoric. Caring for her elderly, increasingly demented mother had given Gubar a good look at the realities of old age, while her father’s suicide years earlier had deeply injured their family. Here, she thought, was a path between a life cut short and one painfully prolonged — a death (for late-stage ovarian cancer is almost invariably fatal) in her 60s, when her daughters were grown and she was happy in her second marriage and her work.
Maybe it was shock; in any case, the elation didn’t last. In its place came Gubar’s fierce determination to face the truth of what was happening and to live by the values that had shaped her life. (Gubar is best known for “The Madwoman in the Attic,” a pioneering work of feminist literary criticism, which she wrote with Sandra M. Gilbert. They also edited “The Norton Anthology of Literature by Women.”) “Memoir of a Debulked Woman: Enduring Ovarian Cancer” is her attempt to share and make sense of her experience — at once a memoir, a review of sobering medical facts, a compilation of cancer reminiscences and of descriptions of illness in literature and art — delivered in a voice that is intelligent, feminist and devastatingly honest.
Ovarian cancer has been called “breast cancer’s poor neglected cousin.” It lacks the public presence created by armies of activists and shelves of upbeat narratives, and for a terrible reason: mortality rates are so high. According to a 2009 report, most patients whose disease is discovered at Stage 3 or 4 “relapse after treatment and die.” Survival rates, unlike those for many other cancers, have barely improved since the 1970s. And unlike the symptoms of breast cancer, for which early detection is possible, those of ovarian cancer — bloating, fatigue, a feeling of satiety, indigestion, constipation — are difficult to distinguish from “the general noise of the midlife or aging body,” as Gubar puts it. Like Gilda Radner, Ann Dunham (Barack Obama’s mother) and many other women with ovarian cancer, Gubar initially ignored early warning signs, then heard them dismissed by doctors, until it was too late. Finally, her concern took her to a Bloomington, Ind., hospital for tests in November 2008.
The standard treatment for advanced ovarian cancer, which gave Gubar her title, is debulking, an attempt to remove as much cancerous tissue, including organs to which malignancy may have spread, as possible. In an operation that can last six to eight hours, the body is sliced open from navel to pubic bone: “Think of debulking as evisceration or vivisection or disemboweling, but performed on a live human being,” Gubar explains. In her case, the debulking was “suboptimal,” which means that visible lesions remained, increasing the chances of recurrence. Some 50 to 70 percent of debulkings are suboptimal. Although the operation extends life, it rarely cures, and it carries a high risk of complications, as Gubar discovered.
Debulking becomes a metaphor that threads through the book. Gubar must search for “debulked ways of being in a decidedly bulky world.” She must “bulk up” before chemotherapy begins. Later, struggling through treatment, she layers on socks and sweaters, “bulking up,” though “the freezing cold seeps into my heart.” The friends who visit after the operation brim with “attachments to the bulky world of parents and children.” Bulk is mass, presence, life; “debulked” is “an ugly adjective” and an ugly reality.
Like many cancer patients, Gubar sought to shield her friends and family from unpleasant details. But in this book she is committed to “telling the truth about the experiences of the female body,” so she recounts them all — dry mouth, tingling feet, the mind-numbing “daily medical regimen,” the familiar hair loss, constant chill and mental fog of chemotherapy. The debulking had its own side effects; in the course of the operation, her colon was perforated, leading to persistent accumulations of fluid and abdominal infections. These led in turn to hideous drains, which she describes unflinchingly (as I will not), and eventually an ileostomy — a surgical opening in the abdominal wall through which waste from the small intestine can leave the body — whose “quite distinct horrors” she also reveals.
Early on, and perhaps consistent with the serenity she felt at the time of diagnosis, Gubar resolves to undergo only one round of chemotherapy, and not to pursue aggressive, useless treatment. “I want to strengthen my commitment not to the sanctity of life in general . . . but to the integrity of my previous life,” she writes, resolving to “avoid the degradations and dependencies of pointless suffering” and to die “without having placed my faith in macrobiotic diets or crystals.” Yet after the yearlong remission brought about by chemotherapy comes to an end with a recurrence in May 2010, Gubar agrees to another round, motivated in part by her love for her daughters, who aren’t ready to lose her. As the book draws to a close, she is facing a third abdominal surgery, “humbled” by “the discrepancy between my initial acceptance of mortality and my dogged pursuance of medical interventions.”
Gubar is as fearless about confronting the emotional course of her disease as she is about describing the physical one. She is sharp-eyed about the “cancer salon” that develops after her debulking, observing the distance she feels from friends still in the thick of life (how “zealous” they are “about their diets or their home improvements”). Going through the motions of sociability, she scolds herself: “What an ingrate I am becoming.” She is humorous about her mother’s inability or unwillingness to understand what’s happening, a confusion that leads her to make heartless comments. (Her mother tells fellow Thanksgiving guests that she has gone through what her daughter has, and “it’s not that bad,” prompting Gubar to discern the word “mother” inside “chemotherapy.”) Her awareness of her new fragility and the “selfishness of sickness” cause her to recognize that “I have become my mother.” She laments the loss of her busy professional and domestic life: “Those selves . . . lie discarded in a litter of ruin behind me.”
Unlike Vivian Bearing, the English professor dying of ovarian cancer who is the protagonist of Margaret Edson’s play “Wit,” Gubar is deeply involved with her family and community. The book glows with love for her husband, to whom it is dedicated, her daughters and stepdaughters, and her many friends and colleagues. Because she is a social being as well as a feminist, Gubar insists that her purpose in writing “Memoir of a Debulked Woman” is to show that “the state of contemporary approaches to ovarian cancer is a scandal,” and to urge fund-raising that will support the development of more successful treatments and methods of earlier detection. She urges women to be aware of the disease’s warning signs, not to dismiss them as the common ailments they resemble and to exhort their doctors to take their complaints seriously.
“Memoir of a Debulked Woman” (not surprisingly, given the circumstances of its composition) has some weaknesses. Its various elements are not smoothly integrated and it is somewhat repetitious. Gubar’s language can be academic. Nevertheless, it is both moving and instructive. Unlike many accounts of life with cancer, it is neither relentlessly upbeat nor melodramatic. Instead, it is straightforward, realistic and incredibly brave.
I don’t know Susan Gubar, but the intimacy of her presentation makes me feel as though I do. And so I wish for a miracle that allows her to enjoy many more family Thanksgivings, graduate seminars and glorious Midwestern summers. Failing that, I wish for the death she wishes for herself: “that someone would find a way to administer a wee overdose while a slow movement of one of Beethoven’s late quartets is sounding in my ears.”