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Will to Live

Few of us lose a parent without regret and some self-reproach, some sense of things undone or injustices unredressed; it is a natural component of grief. The literature of memoirs by children of their parents, from Father and Son to Mommie Dearest—whether by Edmund Gosse or John Stuart Mill, Sean Wilsey or Francine du Plessix Gray—may be affectionate, angry, or ambivalent, but such works inevitably contain conscious or unconscious expressions of the reservations and differences essential in a parent–child relation if the child isn’t to be submerged in the parent’s tremendous identity. David Rieff’s memoir of his mother, Susan Sontag, has all of these qualities, which perhaps accounts for its power beyond mere eulogy, elegy, or complaint.

Swimming in a Sea of Death is narrowly focused on his reaction to her death in 2004 from a rare blood malignancy, and on the medical issues around it, some of which she had also written about, though only very generally, from the point of view of a cancer survivor. Rieff now gives his account of her nearly thirty-year battle against three potentially fatal cancers, and its effect on him. Besides being an eloquent record of grief, it raises a number of issues pertaining to cancer, its treatment, and our attitudes toward the language of illness and dying—subjects long of interest to Sontag herself.


In 1975, Sontag, then aged forty-two, was diagnosed with stage-four (advanced), metastasized breast cancer. Doctors explained the “hopeless” prognosis to Rieff, then twenty-three, but she herself was not directly told the medical facts, a reticence common at the time. One can be sure, however, that she knew the grim statistics perfectly well, because she looked them up. In her famous essay “Illness as Metaphor,” first published in these pages in January and February 1978, and later as a book with “AIDS and Its Metaphors,”1 she says:

All this lying to and by cancer patients is a measure of how much harder it has become in advanced industrial societies to come to terms with death. As death is now an offensively meaningless event, so that [cancer] widely considered a synonym for death is experienced as something to hide.

She herself was no exception to this reluctance: Rieff emphasizes that she hated talking about death and “loved living,” had an “avidity” for life. Her unwillingness to accept her own mortality continued onto her deathbed, and Rieff didn’t dare bring it up, a fact that most curiously reflects his own ambivalence about her attitude toward illness. Her denial of impending death, which he wished to respect, versus his sense of what she should know, discuss, face, and accept, is one of the themes of his book. Another is the language of such discussions, and the sincerity with which it is deployed, which was central to Sontag and Rieff’s experience with doctors; and the last is the larger metaphysical question, and

in the end, that is the question that haunts me. Had Stephen Nimer [Sontag’s last physician] been able to save my mother’s life, would she have been reconciled to dying of something else later on? Are any of us, when it’s our turn?

Sontag had declared when she was a sixteen-year-old student at the University of Chicago that death was not going to cut her own life short, an interestingly precocious preoccupation at an age when people normally sense themselves immortal. She wrote then of “not being able to even imagine that one day I will no longer be alive.” It was the start of her commitment to do whatever it took to live: dying was not an option. “The simple truth is that my mother could not get enough of being alive. She reveled in being; it was as straightforward as that,” Rieff says.

Her breast cancer in 1975 was the first test of her resolve. It had been shown to have already spread to lymph nodes in her armpit, a combination considered hopeless by most cancer authorities of the day. Today’s fairly standardized treatment for breast cancer consists of minor, individualized variations of three major means of attack: local surgery, regional radiation, and systemic chemotherapy; but the treatment options for Sontag at the time were limited to surgical removal of the breast—a mastectomy, either radical or limited—and a course of primitive palliative chemotherapy. (Radiation was available, but we aren’t told if it was considered in her case.) Chemotherapy, which today would be given without hesitation to a woman with a cancer similar to Sontag’s, with full expectation of a remission and extension of life measured in months or even years, was then in its infancy.  

Radical mastectomy was still in vogue, although its efficacy compared with alternative, more conservative surgical approaches was being evaluated. (Studies would prove it unnecessarily drastic.) The brutal operation, now obsolete, consisted of complete removal of the entire affected breast, plus the large pectoral muscles underneath on the outer surface of the rib cage, and all the lymph nodes and other tissues extending up to and deep within the armpit. Radical mastectomy regularly left a disfiguring concavity on the upper half of one side of the chest plus a weakened swollen arm on the same side, but it remained the standard breast cancer treatment for almost a century. In Annie Leibovitz’s 1992 photographs, Sontag, otherwise naked, covers her mutilated chest, the gesture an emblem of the trauma of this disfiguring operation.

Before the surgery at Memorial Sloan-Kettering Cancer Center in New York City, she went to the Cleveland Clinic for a second opinion; we don’t know what she was told about chemotherapy, but she was counseled to have a limited rather than a radical mastectomy—advice she disregarded, opting for the more mutilating procedure as soon as she returned to Sloan-Kettering. Rieff explains that Sontag’s choice was totally consistent with her determination to do anything and everything possible to survive: “Real commitment for her,” like the type of mastectomy she elected to have, “was always radical.”

Where many might have accepted the finality of her bleak prognosis, she took matters into her own hands, read up on her condition, and with help from a French friend (the actress Nicole Stéphane) contacted a French physician, Lucien Israël. Israël was originally a lung specialist who had switched to oncology before the specialty was officially recognized in France, and was known for his encouraging results in her sort of case using experimental immune therapies and chemotherapeutic agents not then being used in the US. In the 1978 English translation, entitled Conquering Cancer,2 of his 1976 book, Le Cancer aujourd’hui, which must have been mostly written before he treated Sontag, the pioneering Israël said, “In the last few years, disseminated breast cancer has entered the ranks of cancers that can be controlled and perhaps cured.” Sontag wasn’t getting that message in America.

In response to inquiries, Israël replied that he thought her case not hopeless, and she started treatment—painful and problematic immuno-chemotherapy, then fairly new, some of which was received in France, some at Sloan-Kettering using Israël’s “cocktail.” One may suppose that Sontag’s familiarity with French and France made her more comfortable with seeking treatment in a foreign country than most Americans would have been. She was then “cured” (it is a term Israël himself later dislikes) for over twenty years, only to be struck with another cancer, this time of the uterus.

Dr. Israël is perhaps best known as a champion of immunotherapy—the administration of certain substances, often (in the Seventies) killed bacteria or their products—in an effort to revitalize an immune system overpowered by the effects of chemotherapy or the cancer itself. In the long run, immunotherapy hasn’t turned out to provide the clinical boost that Israël envisioned, but remains a subject of considerable current research interest.3 Israël was also among the first to use and extol the superior benefits of cancer chemotherapy with multiple rather than single powerful agents: currently, most aggressive chemotherapeutic regimens include multiple drugs, though the “maintenance treatment” subsequently given sometimes uses only one. Sontag’s admiration for Israël is evident in the blurb she wrote for Conquering Cancer: “By far the most intelligent, informative and useful book ever written on cancer.”

Sontag received combined immuno-chemotherapy. (Her enthusiasm for immunotherapy is apparent in Illness as Metaphor: “As chemotherapy is more and more supplanting radiation in the treatment of cancer patients, an effective form of treatment (already a supplementary treatment of proven use) seems likely to be found in some kind of immunotherapy.”) Sontag was a self-proclaimed risk-taker, and she sought treatment that differed from the standard regimens then available—on which the prevailing and forbidding statistical prognosis was based. Israël’s boundless optimism, plus his forceful and daring approach to treating cancer, especially breast cancer, were a perfect match for her determination and willingness to try anything to survive.

Her treatment was also radical, at least when compared with present-day, precisely regulated standards of experimental medicine, in that her therapeutic cocktail, brewed by Israël in France, was sent to New York City and administered twice weekly by physicians at Sloan-Kettering. Today, in the US, experimental drugs require rigorous and lengthy evaluation before they can be administered, and uncertified regimens would not be allowed. To bypass this process, especially to get unauthorized and usually futile treatments such as laetrile or krebiozen, cancer patients must travel outside the United States, to Mexico, for example.

Going outside the approved channels was in Sontag’s case an inspired decision, and she remained a convinced advocate of patients researching and reasoning on their own behalf. Her French adventure gained her more than twenty years. There are various explanations for her long survival that tend to discount the French treatment. Her friend Dr. Jerome Groopman, the expert oncologist and medical writer, explained to Rieff after she had died that “there are always people on the tail end of the [statistical survival] curve,” and that Sontag was one of them; others might declare her an “outlier,” off the curve entirely, or conclude that she still had residual cancer of which the metastases hadn’t yet cropped up (as sometimes happens). Both Sontag and Rieff, though, attribute her survival to Israël and his innovative treatment, and to her decisions, guided by her own perception that chemotherapy, with its systemic effects, would be better than focal radiation at attacking possible disseminated metastases.

It is worth noting that the controversial Israël had also annoyed many of his colleagues by constantly and publicly advocating cooperation among medical specialists, instead of the then-prevalent competition among surgeons, radiation therapists, and medical oncologists in the treatment of patients with cancer. As Israël pointed out, in the Seventies, the treatment you got depended somewhat on the specialty of the doctor you happened to see first. Today, just as he was urging then, multidisciplinary case conferences—tumor boards—are a regular feature in cancer centers.

Rieff, in Swimming in a Sea of Death, raises some important issues that pertain to contemporary medicine in general, not just to Sontag’s particular diseases. The five-year survival rate of women with breast cancer improved only slowly for a decade or so after 1975, when Sontag was first stricken, and then advanced substantially. But as he emphasizes, the concept of five-year survival can be misleading. If breast cancers are diagnosed, say by mammography, earlier than would once have been the case, five-year survival rates are bound to increase, even if nothing else changes, because a patient has been recruited into the medical system earlier than she would otherwise have been: what counts is the impact of early diagnosis on overall mortality, not just breast cancer mortality. (Radiation of breast cancer appears to hasten death from heart disease; Sontag’s death from myelodysplastic syndrome was caused by the cancer chemotherapy she had received. Such deaths would not be attributed to “breast cancer.”)

  1. 1

    Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (Anchor, 1990).

  2. 2

    Lucien Israël, Conquering Cancer, translated by Joan Pinkham (Random House, 1978).

  3. 3

    See Elizabeth A. Mittendorf, George E. Peoples, and S. Eva Singletary, “Breast Cancer Vaccines: Promise for the Future or Pipe Dream?” Cancer, Vol. 110, No. 11 (October 15, 2007), pp. 1677–1686.

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