18:14 PM

Public Discourse Remains Hush on Ovarian Cancer

These days when you see a pink ribbon on a yogurt container, you probably know what it means. Years of fervent and intelligent work by activists and advocates have greatly increased public awareness of breast cancer. If you see a teal ribbon however—and you may see a few of them in September—you may not know what it signifies; and even if you find out it’s for Ovarian Cancer Awareness Month, you may still feel a little confused. But for me, every day of every month is a time of ovarian cancer awareness since my diagnosis with the disease in 2003.Ovarian cancer has nowhere near the visibility of breast cancer, and that’s partly because the incidence is lower:  approximately 1 in 10,000 women are diagnosed with ovarian cancer as compared to about 12 in 10,000 for breast cancer. Still, 20,000 women each year in the U.S. are diagnosed with the disease that is the fifth leading cause of cancer death. Its lower incidence rate compared to breast cancer is only one reason for feeling vague about ovarian cancer.Historically, medical and public discourse has theorized the ovaries as something to whisper about even when healthy. Treated as the locus and definer of womanhood for centuries, the ovaries have been imagined a place of powerful and dangerous generativity, uncontrolled sexuality and rage. Within this framework, imagining ovarian cancer as the wages of sexuality is simple: a case of cells (like girls) gone wild.Public service announcements have worked for years with the concept of ovarian cancer as a “silent killer,” and correspondingly, with a “listen to the whisper” campaign. But the campaign unintentionally points at an alternate reason for the relative marginalization of ovarian cancer. Not only is ovarian cancer less common than breast cancer, but also, we whisper about things we consider shameful.Partly because they are internal organs we can’t visualize without help and partly because of their long history of associations with power, danger and femininity, North American public culture imagines the ovaries vaguely if at all. This is purposeful, to some extent. It’s scary to imagine our inner organs. But when we have a problem that is internal, we may have a hard time knowing what we know, naming what we sense, and transforming vague sensations into awareness and action.For three months before my diagnosis in 2003, I noticed many small differences in my body. But without a context to shape this awareness into meaning or action I did nothing. Or rather—I alternated between checking to see if those strange sensations were still there (they were) and trying to look the other way when my body signaled in bigger and bigger gestures that something serious was happening. I felt very fatigued and very bloated, but maybe it was just because I was getting older. There were some other, weirder and more subtle things.As I wrote in a recent essay,There was a ledge inside my abdomen.  It was like pressing your body up against the edge of a kitchen countertop or a table--but the pressure came from inside instead of outside, like a countertop growing inside my belly, pushing out to tighten and tauten the skin of my pelvis. It was like being pregnant—that sense of an alien life form inhabiting your body with wishes of its own. I could not see, but expected to see, a new ridge emerge from the surface of my belly….It was like the feeling after surgery when you suddenly know you are made of flesh, tissue that can be folded or stitched, only there had been no surgery yet. I never had the guts to press it from outside. Even the idea of palpating this strangeness brought on the other sense of “ledge,” feeling suddenly poised on the windowsill at the edge of an unfathomable space.When I finally went in for the routine checkup I’d been avoiding, my doctor—and then the ultrasound technician—found “a very large, complex mass.” Grapefruit-sized tumors had overcome my ovaries. Of course I felt something. So why didn’t I seek treatment sooner? If I was to blame at all in the timing of my diagnosis—and I was very fortunate that it was relatively early—it was through a failure of imagination exacerbated by the sparseness of public culture of ovarian cancer: the images, metaphors and stories that allow us to not simply connect ourselves with conditions we read about, but more crucially to connect with what may be taking place deep inside our bodies.When I got that diagnosis and started madly Googling, I didn’t know of anyone who had died of ovarian cancer except phenomenally smart and funny comedienne Gilda Radner. Now I know of many more—civil rights activist Coretta Scott King, singer-songwriter Laura Nyro, chemist Rosalind Franklin (whose work was crucial to the discovery of the structure of DNA) and at least one good friend. Desperate to imagine a future for myself, I sought stories of living with ovarian cancer frantically and found they were mostly below the radar of public discourse, especially and inevitably compared to the important stories and images of breast cancer that by 2012 surround us daily. I had trouble finding even one story that didn’t end in death, and this included the few fictional narratives I found. Even finding a verbal description of what ovaries feel like to women, or to the physicians examining them (olives or almonds), was an even bigger challenge. I’m thankful for my doctor’s diagnosis, which clearly saved my life. I’m glad to share my story in hopes that it will keep others from the direr narrative I could have lived but didn’t. I hope this story inspires anyone who is sensing things, having awareness, but looking the other way.I have argued that inability to realize or articulate the rapid and substantial growth of tumors on my own ovaries was more than a case of lack of bodily awareness. In order to imagine certain diseases, especially when it comes to our internal organs, we need to have a strong communication loop connecting changes in our bodies with the sensations of those changes. Mediating between the two, in a culture dominated by the visual, are the public images that train us how to imagine and articulate what we experience in health and in sickness. While much of the conversation between the brain, the interior and the exterior occurs without our awareness, we can and must intervene in the parts to which we do have access. Above all, we need a public culture of the body that can prompt individual acts of reception, recognition and self-advocacy.Make ovarian cancer part of your public discourse by educating yourself. Visit www.ovarian.org.