May 21, 2012
(USA TODAY) -- After learning she had advanced ovarian cancer, Susan Gubar felt the need to reassure her two grown daughters that not even death could separate them.
Although she lacks conventional faith in religion or the afterlife, Gubar says, "I found myself earnestly promising one and then the other of my distressed daughters: 'I will love you beyond my death. I will love you from another space that you will palpably feel, and feel me to be loving you.'"
Gubar's promise to love her daughters from beyond the grave, if not from heaven, was one of several ways that Gubar surprised herself after her diagnosis in 2008. The disease -- which kills more than half of women in five years -- forced her to weigh treatments that could extend her life, and even grant temporary remissions, but at the cost of tremendous suffering, says Gubar, 67, author of the new book Memoir of a Debulked Woman: Enduring Ovarian Cancer (W.W. Norton & Co., $24.95).
Carrying on with therapy
Like many healthy people, Gubar at first assumed that she would undergo only the most minimal of treatments, rather than risk becoming disabled by therapy or a burden to her family.
"I was wrong; I found myself going through more than three rounds of chemotherapy," says Gubar, who pioneered the field of feminist literary criticism in the 1970s. Gubar carries on with therapy, partly because of her love for her daughters and husband. Yet her choice to continue therapy was also extraordinary, she says, considering the harrowing complications caused by her first, radical surgery. The operation, called "debulking," felt more like a disemboweling, she says. It removed not only her ovaries, uterus and fallopian tubes but also the appendix, seven inches of intestine, layers of fat and a membrane lining the abdominal organs.
Debulking is the standard surgery for advanced ovarian cancer, says Ursula Matulonis, an ovarian cancer specialist at Boston's Dana-Farber Cancer Institute. Doctors try to trim away tumors they can't entirely remove, hoping to make chemotherapy more effective. Combined with chemotherapy, which can knock out microscopic cancer cells that surgeons can't find, the surgery, though painful, is a woman's best chance to cure or at least control cancer for a long time.
For Gubar, debulking becomes a metaphor for what cancer treatment does to women. "Even your sense of humor is eclipsed," says Gubar, who is now in remission. "You can't think about the vast bulk of what your life has been before: your husband, your family. Your emotions, your spirit gets debulked."
Though Gubar found it impossible to talk about some of these complications, especially those that occurred below the belt, she felt compelled to write about them, partly because there are so few memoirs about the disease.
A need to 'speak up'
Ovarian cancer survivor Rebecca Esparza, 40, says she's glad to have another articulate advocate for women. "We're in desperate need of more people to speak up," says Esparza, of Corpus Christi, Texas.
Yet Gubar acknowledges that her memoir, in its brutally honest depiction of side effects and complications, may be too much for some ovarian cancer patients, especially those "in need of resilience and grit." Miki Young, who is now in her third round of chemo for advanced ovarian cancer, says she has no plans to read Gubar's book. "I don't want to know how bad it could be," says Young, 60, of Philadelphia.
Although she uses her book to testify to the inadequacies of modern cancer care, Gubar says she doesn't fault her physicians, "who have no options but to extend your life through options that hurt you." Yet Gubar writes, "Something must be done to rectify the miserable inadequacies of current medical responses to ovarian cancer." She also hopes medical advances will quickly make her critique sound outdated, "as soon as possible, sooner than possible."
Copyright 2012 USA TODAY, a division of Gannett Co. Inc.