Life, Interrupted
Suleika Jaouad writes about her experiences as a young adult with cancer.
Every few weeks I host a “girls’ night” at my apartment in Lower Manhattan with a group of friends who are at various stages in their cancer treatments. Everyone brings something to eat and drink, and we sit around my living room talking to one another about subjects both heavy and light, ranging from post-chemo hair styling tips, fears of relapse or funny anecdotes about a recent hospital visit. But one topic that doesn’t come up as often as you might think — particularly at a gathering of women in their early 20s and 30s — is sex.
Actually, I almost didn’t write this column. Time and again, I’ve sat down to write about sex and cancer, but each time I’ve deleted the draft and moved on to a different topic. Writing about cancer is always a challenge for me because it hits so close to home. And this topic felt even more difficult. After my diagnosis at age 22 with leukemia, the second piece of news I learned was that I would likely be infertile as a result of chemotherapy. It was a one-two punch that was my first indication that issues of cancer and sexual health are inextricably tied.
But to my surprise, sex is not at the center of the conversation in the oncology unit — far from it. No one has ever broached the topic of sex and cancer during my diagnosis and treatment. Not doctors, not nurses. On the rare occasions I initiated the conversation myself, talking about sex and cancer felt like a shameful secret. I felt embarrassed about the changes taking place in my body after chemotherapy treatment began — changes that for me included hot flashes, infertility and early menopause. Today, at age 24, when my peers are dating, marrying and having children of their own, my cancer treatments are causing internal and external changes in my body that leave me feeling confused, vulnerable, frustrated — and verifiably unsexy.
When sex has come up in conversations with my cancer friends, it’s hardly the free-flowing, liberating conversation you see on television shows like HBO’s “Girls” or “Sex and the City.” When my group of cancer friends talks about sex — maybe it’s an exaggeration to call it the blind leading the blind — but we’re just a group of young women who have received little to no information about the sexual side effects of our disease.
One friend worried that sex had become painful as a result of pelvic radiation treatment. Another described difficulty reaching orgasm and wondered if it was a side effect of chemotherapy. And yet another talked about her oncologist’s visible discomfort when she asked him about safe birth control methods. “I felt like I was having a conversation with my uncle or something,” she told me. As a result, she turned to Google to find out if she could take a morning-after pill. “I felt uncomfortable with him and had nowhere to turn,” she said.
This is where our conversations always run into a wall. Emotional support — we can do that for one another. But we are at a loss when it comes to answering crucial medical questions about sexual health and cancer. Who can we talk to? Are these common side effects? And what treatments or remedies exist, if any, for the sexual side effects associated with cancer?
If mine and my girlfriends’ experiences are indicative of a trend, then the way women with cancer are being educated about their sexual health is not by their health care providers but on their own. I was lucky enough to meet a counselor who specializes in the sexual health of cancer patients at a conference for young adult cancer patients. Sage Bolte, a counselor who works for INOVA Life With Cancer, a Virginia-based nonprofit organization that provides free resources for cancer patients, was the one to finally explain to me that many of the sexual side effects of cancer are both normal and treatable.
“Part of the reason you feel shame and embarrassment about this is because no one out there is saying this is normal. But it is,” Dr. Bolte told me. “Shame on us as health care providers that we have not created an environment that is conducive to talking about sexual health.”
Dr. Bolte said part of the problem is that doctors are so focused on saving a cancer patient’s life that they forget to discuss issues of sexual health. “My sense is that it’s not about physicians or health care providers not caring about your sexual health or thinking that it’s unimportant, but that cancer is the emergency, and everything else seems to fall by the wayside,” she said.
She said that one young woman she was working with had significant graft-versus-host disease, a potential side effect of stem cell transplantation that made her skin painfully sensitive to touch. Her partner would try to hold her hand or touch her stomach, and she would push him away or jump at his touch. It only took two times for him to get the message that “she didn’t want to be touched,” Dr. Bolte said. Unfortunately, by the time they showed up at Dr. Bolte’s office and the young woman’s condition had improved, she thought her boyfriend was no longer attracted to her. Her boyfriend, on the other hand, was afraid to touch her out of fear of causing pain or making an unwanted pass. All that was needed to help them reconnect was a little communication.
Dr. Bolte also referred me to resources like the American Association of Sexuality Educators, Counselors and Therapists; the Society for Sex Therapy and Research; and the Association of Oncology Social Workers, all professional organizations that can help connect cancer patients to professionals trained in working with sexual health issues and the emotional and physical concerns related to a cancer diagnosis.
I know that my girlfriends and I are not the only women out there who are wondering how to help themselves and their friends answer difficult questions about sex and cancer. Sex can be a squeamish subject even when cancer isn’t part of the picture, so the combination of sex and cancer together can feel impossible to talk about. But women like me and my friends shouldn’t have to suffer in silence.
