Psychology of Medicine: Living With Cancer: Dancing With N.E.D. ...

The vocalist begins her song with people shocked by a diagnosis they cannot accept, women not yet ready to admit they have cancer.

Starts with denial, there must be some mistake;
Check the name, check the lab, double-check the date.

While electric guitars and percussion join in, the lyrics of the song,?"Third-Person Reality,"?go on to describe turbulent anger, tension and fear that can only be eased by acceptance.

Measure success one day at a time
Together we'll get to a better place
If you place your hand in mine.

The symbol of women with cervical, endometrial, ovarian, peritoneal, tubal, vaginal, and vulvar cancers-?a teal ribbon-often goes unrecognized, but these patients do have their own rock band. Through the driving rhythms of folk-rock, the band members of N.E.D. accompany a refrain made especially meaningful by the fact that they are all surgeons who treat patients with gynecological cancers. The group started as a cover band to entertain doctors at a 2008 meeting of the Society of Gynecological Oncologists. Since then they have taken on a mission "to break through the silence of women's gynecological cancer." In the process, they have produced two albums to raise awareness and money for research.

The band's name strikes a special chord with anyone who has had cancer. The acronym, N.E.D., stands for that rapturous moment when patients are told that there is "no evidence of disease."

The band's debut year, 2008, happens to be the year I was diagnosed with ovarian cancer, and I find myself learning from?N.E.D.'s Web site?about the umbrella term -- "gynecologic cancers" -- within which my disease resides. The American Cancer Society estimates that about 83,000 women are diagnosed each year with cancers "below the belt," and approximately 28,000 die from them. Yet with the notable exception of the brilliant comedienne Gilda Radner, who had ovarian cancer, no celebrity has emerged to represent the plight of these patients.That fact may illustrate how stigmatized these diseases remain. Do women with gynecological cancers still find it difficult to overcome modesty about difficult-to-discuss body parts, even in this current age when such body parts seem weirdly chatty? Notwithstanding Eve Ensler's historic?"Vagina Monologues"?and Naomi Wolf's narcissistic?"Vagina,"?I suspect that quite a few women do not want to publicize their relationship with their genitals -- especially when sexual and reproductive organs are imperiled by disease. Who can blame them and more power to them, I think.

After all, the title of the song "Third-Person Reality" suggests that people with cancer often feel so traumatized that they lose the ability to experience or express their sense of themselves. Alas, they may have morphed from first-person individuals into third-person patients, waiting interminably for this test or undergoing that procedure or paying for another script for yet another drug -- even if, as in my lucky case, a caring oncologist offers a helping hand.

There are and have been prominent women whose recognition could call attention to gynecological cancers. Think of the award-winning actress?Carol Channing?or Miss America of 1945,?Bess Myerson. Other exceptional people were swirled into the swing and sway of N.E.D. for only a round or two. The British biophysicist Rosalind Franklin lived long enough to illuminate the molecular structure of DNA, but her death made her ineligible for the Nobel Prize accorded Watson and Crick (who barely acknowledged her contribution). President Obama's mother, Ann Dunham, raised two remarkable children while completing a Ph.D. in anthropology and helping to establish micro-industries in Indonesia before she was misdiagnosed with one gynecological disease and died of another. That Dr. Franklin was 37 years old and Ms. Dunham 52 reminds us that such cancers do not single out aged women.A few weeks ago I received a heart-breaking e-mail from a mother whose daughter, Taylor Steele, died of ovarian cancer at 17. The Web site of the nonprofit foundation?Strong as Steele?informs me that Taylor Steele loved to dance, but she did not get much time with N.E.D. after she was diagnosed at 12.

And then there are people like me who are diagnosed later in life but can't fill out an N.E.D. dance card because, unfortunately, we still have E.D. (evidence of disease). That said, I am here to add that it is possible, if only intermittently, to hum along with E.D., which has its own sometimes somber but sometimes revitalizing rhythms.

The physician-musicians of N.E.D named their second CD?"Six Degrees"?for their six medical degrees, but also for the six degrees of separation between patients with gynecological diseases and everyone else. The title reminds me that every six minutes an American girl or woman discovers that she has a gynecological cancer. Let us hope that future research will develop new detection tools and improved treatments, giving each one a longer time to twist and shout with N.E.D.

Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of "Memoir of a Debulked Woman," which explores her experience with ovarian cancer.

Source: http://psychologyofmedicine.blogspot.com/2012/12/living-with-cancer-dancing-with-ned.html

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