July 2008

Last month, activists from Intersexuelle Menschen e.V., an international organization representing several intersex advocacy groups, protested outside of the Children’s Hospital in Zurich. It looks a lot like the protests ISNA organized in 1996 outside the annual meeting of the American Academy of Pediatrics. Protestors in Zurich carried signs that read ”Human rights for zwitters too.” Apparently “zwitter” is pejorative term for hermaphrodite that activists have reclaimed. (They also held a protest in Cologne in December 2007.)

On July 20th, this group, along with XY Frauen, presented a lengthy report to the UN CEDAW committee (Convention on the Elimination of All Forms of Discrimination Against Women) outlining human rights violations stemming from the medical treatment of intersex conditions. More information is here. The day before, Intersexuelle Menschen e.V. also submitted a list of demands to the the German Parliament.

In October 2006 I was diagnosed with breast cancer. I spent the next ten months undergoing surgery, chemotherapy, and radiation, the last session of which was July 17, 2007. That day marks the end of treatment though I still take drugs every day to keep the cancer at bay.  Last week marked the end of my first year out of treatment. What has struck me about my cancer treatment experience is that when I look back I remember a surprisingly blissful time. I stopped working for about 4 months and instead cooked and read, and just let myself be. It was one of the most peaceful periods in my life. In August I went back to work and it was almost as though cancer had not happened. Life felt the same as it had before cancer. A part of me was expecting it to change radically—it didn’t. Some days I felt as thought I failed to get cancer’s lessons, but I was, and still am, struck by the banality of cancer’s effect on my life, but perhaps this is because my cancer was not going to kill me, at least not now.

One factor did change. Every day, in some way, I think about cancer. I wonder whether it will come back, whether it is already back, growing inside. Often these thoughts aren’t immediately accessible; rather, they lurk a few layers down and, like a Jack-in-the-Box, pop up unexpectedly. It’s usually in response to a reference to things far in the future—”We’ll see how you feel about that in 10 years”—and my instinctive, unrehearsed response is to wonder whether cancer will let me live another 10 years. Cancer is with me, every day, in this kind of way.

But lately it’s been with me in more urgent ways. My uncle’s dearest friend died of lung cancer this summer. A friend was recently diagnosed with stage IV ovarian cancer. And a young woman I met last year recently died from breast cancer. She was 40. These events have jolted me in unfamiliar ways. It is as if my body and theirs are connected, and our fates tied. I am scared of dying, a feeling I haven’t had in a long time.

It reminds me of an essay ”Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors,” by Alice Trillin, writer, teacher, and the late wife of essayist Calvin Trillin. Alice wrote the essay in 1981 and it is a moving, lovely piece that captures what I have found to be cancer’s lingering effect in my life. In it, she writes, “We are all afraid of dying. … Our fear of death makes it essential to maintain a distance between ourselves and anyone who is threatened by death. Denying our connection to the precariousness of others’ lives is a way of pretending that we are immortal. We need this deception—it is one of the ways we stay sane— but we also need to be prepared for the times when it doesn’t work. . . . for me . . . it is particularly important to face the fact of death squarely, to talk about it with one another…[c]ancer connects us to one another because having cancer is an embodiment of the existential paradox that we all experience: we feel that we are immortal, yet we know that we will die.”

In the article she discusses the talismans we turn to to gain control over the things that frighten us, in this case death. She describes several including the way the doctor and patient are both talismans for one another. With our doctors we stage a drama “in which we pretend that doctors have the power to keep us well.” But we are also a talisman to our doctors who “defy death by keeping people alive. To a patient, it becomes immediately clear that the best way to please a doctor is to be healthy. If you can’t manage that, the next best thing is to be well-behaved.” We also aim to will ourselves well and to keep us alive. Trillin’s hope is that we recognize these for what they are and see their limitations.

So what of the garden peas and dragons? Well, the garden peas stand in for those details of our daily lives, such are gardening and planting peas, that also become a talisman. These moments of living our lives, while incredibly important, do not have magical powers to keep us alive. But they are the things we do to tie ourselves back to life in our own way and, somehow, I imagine that simply by doing them I am reaffirming my belief that I just might outlive this. As she said, it’s what we cling to when we have nothing else to reassure us.

In a later article for the New Yorker, Alice wrote of the dragon that sleeps inside everyone who has had cancer, the dragon that we do not want to awaken. She writes, “We will never kill the dragon. But each morning we confront him. Then we give our children breakfast, perhaps put a bit more mulch on the peas, and hope that we can convince the dragon to stay away for a while longer.

I am thinking about the dragon. And this year, for the first time, I planted peas.

Dexamethasone, or DEX as it is called, is a powerful steroid that has been administered to pregnant women who have previously given birth to a child with congenital adrenal hyperplasia (CAH). The aim is to minimize (or altogether prevent) the virilization of the female fetus’s genitals that happens in utero. It’s a practice that has been going on for over two decades.

Genital development occurs early in pregnancy, so DEX is typically given as soon as the woman knows she is pregnant, which is often before anyone knows the sex of the child. When what is known as CVS testing is possible at about 11-12 weeks gestation, DEX will be discontinued if it is found the fetus is either male or an unaffected girl. Because of the gap between when genital development occurs and when fetal sex is typically known, there is a great deal of overtreatment. Some estimates are that as many as 7 out of 8 women given DEX have healthy fetuses. New methods that enable sex determination earlier in gestation will help to reduce this overtreatment, but these methods may not be widely used and this still doesn’t address a larger problem: we have very little information about the long term safety of DEX on the fetus and mother.

DEX, which has been used for years in adults and has not been approved for use in pregnant women, has a bunch of nasty side effects for pregnant women. Most of these, it is believed, disappear after discontinuation. A recent article, however, reviews worrying evidence from animal and human studies that suggests possible effects on cognition (such as working memory) as well as future health of the child (e.g., type II diabetes and high blood pressure). Based on the evidence, the authors conclude there is an "urgent need for in-depth studies of long term outcome of prenatal treatment of CAH regarding both maternal side effects and possible negative metabolic as well as cognitive and behavioral effects in the growing fetus and the child in her development into adulthood."

Slate has a piece (in 6 parts) on what author Amanda Schaffer calls the sex difference evangelists—basically clinicians and scientists who are getting a lot of attention for claiming all kinds of behavioral and cognitive differences between men and women are hard-wired from birth. Schaffer singles out Louann Brizendine, author of The Female Brain, and Susan Pinker, who wrote The Sexual Paradox, both of whom oversimplify the research and make some pretty specious claims. It’s nice to see this kind of skepticism reach a popular venue. For a great critique of The Female Brain, see this review by Rebecca Young and Evan Balaban in Nature. Young is a professor at Barnard who has closely examined this whole body of research. Her analysis is brilliant and much-needed so hopefully her book will be out soon.