Memoir of a Debulked Woman: Enduring Ovarian Cancer

If Schadenfreude is your thing, you’re in for a treat. For everyone else, this raw and moving illness memoir is no party. Bringing her scholarly gifts to bear on the topic of ovarian cancer, Susan Gubar continues what has been her life’s work, the study of “women’s understanding of their bodies and how those understood bodies influenced the cultures they inhabited and created”. This is the same perspective that informs Gubar’s iconic work of literary criticism, The Madwoman in the Attic, which was written with Sandra Gilbert more than 30 years earlier. Still in print, Madwoman uncovers a female subtext, foregrounding female anger against misogyny. It is not too much to say that this work virtually created Anglo-American feminist criticism, distinguished a female literary tradition, launched the effort to reclaim significant but forgotten works by female authors and for ever changed the direction of literary studies and the way we read.

If Madwoman argues that 19th-century culture turned women into invalids, Gubar now wonders if her distrust of the medical establishment - and of male physicians who consider female reproductive organs to be abnormal - contributed to her illness: “In the early 1980s, did the feminism to which I dedicated my life lead me astray?” Although Gubar had been experiencing gynaecological problems at the time she was writing Madwoman, she had rejected advice to have a radical hysterectomy. Heartbreakingly and apologetically, she blames herself for her dismissal of symptoms, for her attitude towards gynaecology and for her earlier lack of nuance: “My qualms about gynecological practices will probably result in my death. I squirm at the thought, consoling myself with the notion that feminist rhetoric today has become more nuanced than it once was and that writing about the disease will provide recompense for my earlier reticence.”

Such a stance does not prevent her from attacking medical culture. In fact, with this book, which condemns debasing, futile and humiliating treatments of ovarian cancer, Gubar becomes an activist. This is important because, unlike advocates for patients with breast cancer, which has much higher survival rates, ovarian cancer advocates are few because, sadly, few survive.

Gubar’s account begins in 2008, when, in her early sixties, she is diagnosed with advanced (read incurable) ovarian cancer. She had sought treatment because of vague and seemingly minor digestive problems. Although they may be warning signs of ovarian cancer, such common complaints are often missed, dismissed or misinterpreted: “What woman, after all, does not experience and generally put up with one or several of its symptoms: bloating, fatigue, a feeling of satiety, indigestion, recurrent back or abdominal or pelvic pain, urinary frequency, flatulence, irregular periods, spotting, cramping, constipation, shortness of breath, pain during intercourse, or incontinence?”

Such symptoms (which may also include diarrhoea and an enlarged abdomen) of this “silent killer” are often misunderstood because they may be associated not only with middle age but also with whining. For this reason, ovarian cancer is often misdiagnosed as endometriosis, indigestion, menopause or ageing (although it may appear in younger women), yeast infections, benign cysts, diverticulitis, irritable bowel syndrome, urinary tract infection, stress, ulcers, depression, pulled muscles, gall bladder attacks - you name it.

Although ovarian cancer does present symptoms, they are different from the symptoms taught in medical textbooks and in medical schools. This is of concern because the cancer can be survived only if it is detected early, which is difficult. Although it is often unreliable, the CA-125 blood test is the only screening test available. Gubar’s cancer is finally identified by a computed tomography image. She undergoes a debulking operation, which is known as the “Mother of All Surgeries”. Debulking (to save you the google) consists of excising part of malignant growths that cannot be totally removed from affected organs. Gubar compares this procedure to “gutting”, “evisceration” and “vivisection or disemboweling, but performed on a live human being”. The operation is made all the more hideous since women, passive upon the operating table, are unable to participate in surgical decisions such as the attachment of ostomy bags. After the debulking, which replaces barely noticeable symptoms with excruciating pain and bloating (“my legs swelled into mighty oak stumps”), Gubar feels that in an instant she has become old, dependent and “taxidermied”. All this is to prepare her for the debilitating chemotherapy (or “poisoning”) that follows.

Gubar tells it like it is in straightforward, gripping and searingly honest prose that is not for the queasy. Refusing to provide false hope in an upbeat recovery frame, she insists on addressing embarrassing physical afflictions that are still stigmatised. Her attempts to get at truths about the female body with courageous, take-no-prisoners descriptions may, however, be too much for many, as she catalogues the excretions that are “fouling” her, the “slimy rivulets of shit coagulating under (her) jeans”.

Unsurprisingly, little in the way of solace is offered to other ovarian cancer patients via Gubar’s graphic and painful descriptions of sophisticated medical care that ends up causing grotesque deformity and debilitating pain far worse than the symptoms caused by the disease itself. Her account may well dissuade others from undergoing the treatments she details, even if they - unlike so many other Americans - have her privileged access to healthcare. The irony is not lost on Gubar, who experiences “anger at the dehumanizing medical practices with which the employed and the insured are treated, or illogically … sorrow over the dreadful fates of those not covered to receive such interventions”.

Gubar’s takeaway message, and one made all the more poignant by her own suffering, is that women should be vigilant in paying close attention to their bodies, since ovarian cancer is usually discovered too late. Although there is no agreement on most of its causes, heredity plays a role that contributes to the anguish of women who may pass this disposition along to their daughters. Women with the genetic markers BRCA1 and 2 have a greater chance of getting both breast cancer and ovarian cancer. (Jewish women of Ashkenazi or Eastern European descent are especially at risk.) While women who have a BRCA mutation may opt for preventive surgery, this does not eliminate risk. (Yes, women can get ovarian/peritoneal cancer even if they have no ovaries.)

If Madwoman models (feminist) reading, Gubar’s memoir, which is in part an enormous commonplace book, models thinking with literature and provides an example of the way in which the love of literature can sustain and nourish the soul and expand the capacity to feel and to understand. Synthesising and interpreting cancer narratives and research, along with a dizzying array of works of art and imaginative accounts that she has spent her life, if you will, bulking up on, Gubar attempts to “twine [her] experiences with those of other women, fictional and real, from the past and the present”.

The result is a powerful demonstration of the way comfort and acceptance may be found not only in the love of family, colleagues and friends, which suffuses this work, but also in both the habit of mind immersed in literature, in music and in art, and the very act of writing, likened here to meditation. Rumour has it that Gubar is currently at work on a book about dying. As the late comedian Gilda Radner put it: “It’s always something!”

The Author

Distinguished professor emeritus of English at Indiana University, where she taught for 36 years, Brooklyn-born Susan Gubar lives in Bloomington, Indiana, with Donald Gray, her husband and fellow academic.

“I really wasn’t very good at anything but reading when I was young, and later I relished conversations about books inside college classrooms and outside them with friends,” she recalls. “In graduate school, I made ends meet by means of a teaching assistantship and that sealed the deal. I found leading class discussions so much fun that I couldn’t believe I was being paid to do it.

“Because of cancer and its treatments, I had to retire a few years ago and what I miss is the most dismal office you can imagine in a building that looks like it was built by Joseph Stalin! I loved colleagues and students coming in and out, the gossip and literary small talk, the exchanging of ideas,” Gubar says.

“Feminism came to me through the classroom. It was only in 1973, when Sandra Gilbert and I were teaching the books we loved - by Jane Austen, the Brontes, George Eliot - that we began to realise that what drew us to these books was their insight into women’s cultural situation and that this insight had previously been ignored. After a collaboration of some 40 years, Sandra continues to be a wonderful friend.”

Gubar adds: “The women’s movement has triggered the most revolutionary social change I have witnessed. My life and the lives of my daughters, stepdaughters and younger colleagues would have been unimaginable to my grandmothers.

“But the forces hostile to women today continue to shock me and my contemporaries. We can only dedicate ourselves to the vigilant work that will make it possible for our great-grandchildren to thrive and prosper.”