Coping with Treatment, Remission and Recurrence.
A profile of Joan Sommer, 19 year ovarian cancer survivor.
Joan Sommer was diagnosed with ovarian cancer in April of 1993, the day she gave birth to her third child, a daughter named Danica. “I heard my doctor say: ‘Oh my god, it’s a girl,’” Joan recalls. “Then a few minutes later, ‘Oh my god, it’s ovarian cancer.’”
Joan’s doctors immediately operated to remove as many tumors as they could. She ultimately spent five weeks in the hospital undergoing chemotherapy for stage four ovarian cancer. Both the diagnosis and the effects of treatment made it hard for Joan to bond with Danica. “The little I knew about ovarian cancer—the very little—was that it was called the silent killer and that most women die very quickly after diagnosis. I started mulling over all the things I was going to miss—birthdays, kindergarten, graduations, weddings. I felt like it was easier to say goodbye if I didn’t say hello.”
On her third day in the hospital, an oncologist met with Joan. He started by congratulating her on the birth of her little girl. “It was the first time someone acknowledged why I came into the hospital, and who I was as a person,” says Joan. The doctor told Joan he had a plan for treating her disease, and that he thought she would do well, because she was young and healthy. “It was the first time that I felt a little hope. I had something to work towards.”
Later that day, Joan felt her milk start to come in. “I was outraged at first. Doesn’t my body get it? I just had a hysterectomy!” But the experience led to a pearl of wisdom that Joan now passes on to other survivors: Your body knows what to do to support life. Get out of your own way and trust your body.
Another insight arrived when Joan returned home from the hospital. She quickly noticed how much baby Danica had changed in five weeks. “As an adult, life can get pretty boring,” Joan says, “But as a newborn every day brings so many big changes. She ended up being a yardstick for my cancer journey. Danica reminded me to focus on each day with my family.”
Joan experienced her first remission about 14 months after her diagnosis. “Everyone around me was clapping and celebrating, but I was scared to death. You’re supposed to be happy in this state of remission, but in your head is this screeching heavy metal band screaming ‘Cancer! Cancer!’ and you have no idea where the volume button is.”
Once she was in remission, Joan had more energy and started to read about the statistics of ovarian cancer. Those numbers made her think that her disease would most likely recur, and that she probably didn’t have very long to live. She didn’t know any women with ovarian cancer, and assumed it was because none of them survived.
One day, Joan spotted an ad on television for a walk in Central Park dedicated to breast and ovarian cancer. That ad led Joan to her first support group for ovarian cancer, where she met women who had survived five and even ten years. “They had recurrences but they were working, traveling, volunteering.” The women in that support group taught Joan to live with the disease. “I had been petrified to tell the doctor how tired I felt—I was afraid to complain because he might stop the treatment. Now I tell women: ‘Don’t be afraid to have chemo on Thursday, rather than Monday, because you have something to do.’”
When her ovarian cancer recurred for the first time, Joan was angry. “I couldn’t imagine how I was going to endure the treatment another year. That anger helped me be a lot more outspoken. I learned to ask for medication to help with the fatigue and anemia. It left me feeling like I do have some control over this.”
Over the years, Joan has experienced many cycles of recurrence and remission. “I never thought I would say this, but I really lost count of how many remissions and recurrences I’ve had. Eventually you’re pretty much on treatment all the time to remain stable.”
Advances in medicine and the support of other survivors helped Joan cope. Better medications allowed Joan to return to her previous work as a nurse. In addition to feeling less nausea and fatigue from her treatments, Joan has turned to clinical trials and research as a source of hope. “I always felt like I needed to have something in my back pocket—if I need to switch treatments, I can try this, whether it be radiation or medication or a clinical trial.”
Support from fellow survivors is important to Joan, as well. She belongs to several online groups, and says: “That has been one of the most important mentors for me in terms of treatment. I’ll post ‘I’m thinking of trying this drug, has anyone been on it? How do you tolerate it?’” Other women’s responses help her know what to expect from a new treatment.
The baby born moments before Joan’s diagnosis is now a sophomore in college. Over the years, Joan has gained many insights into coping with cancer, both from her own experience and those of fellow survivors.