Cancer survivors find strength and inspiration in all kinds of places. For Annie Ellis, 48, in one of her lowest moments, it came from the Grateful Dead.
“I had been a super mess for three months,” the White Plains, N.Y. resident says of the day in 2005. “But one day ‘Touch of Grey’ came on the car radio, and I heard, ‘I will get by, I will survive.’ And that turned the knob.’”
At the time, Annie, then 41, was dealing with her first recurrence of ovarian cancer. She’d initially been diagnosed with the disease at age 40, after complaining of bloating, heavy periods and abdominal and back pain. She underwent a total abdominal hysterectomy, followed by chemotherapy. But the cancer reappeared on her liver about a year later.
“The first recurrence was harder than the original cancer diagnosis,” she says. “People don’t like to talk about the fact that it might come back. But for ovarian cancer, it’s part of our reality.”
Annie subsequently had a second recurrence in her liver, and ultimately opted for an aggressive treatment: a partial liver resection. She’s now been disease-free for five years.
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Inspired by her journey, she began working with the Ovarian Cancer National Alliance (OCNA) and a local hotline for women dealing with ovarian cancer. “I talk to a lot of women dealing with their first recurrence,” she says. “They’re scared and they think they’re going to die, so the first thing I tell them is, ‘You’re not alone, and there are people who live with ovarian cancer. Some don’t have recurrences, and some manage the disease over time.’”
Annie also helps talk patients through treatment options, which she says grow more complex as ovarian cancer recurs.
“The patient is more involved in the decision process in recurrence,” she says. At several points during her cancer she was offered a choice of treatments with very similar success rates. When that’s the case, she notes, you make decisions based on your lifestyle needs.
“At one point it was very important for me to keep working and maintain a routine,” she says. “At another point in my life, when my daughter was getting married, I wanted to keep my hair!”
The constant threat of recurrence is just one way that the ovarian cancer experience is different from other types of cancer that commonly affect women, Annie says. Another is that there is much less consensus among the medical community about how to prevent, detect and treat ovarian cancer. After taking an incredibly active role in her treatment—reading everything she could get her hands on and researching clinical trials and more experimental types of chemotherapy—she joined the Department of Defense’s Ovarian Cancer Research Program as a consumer reviewer. She sat on a panel that helped evaluate research proposals and decide how to direct funding.
“It was scary at first to see that our doctors don’t agree 100 percent,” she says. “But hearing their discussions was important to me.”
While she’s encouraged by the ovarian cancer research on the horizon, Annie knows that she may someday be battling the disease again. But she’s come a long way from the “basket case” she says she was the first time her cancer returned. Now she doesn’t let the worry keep her from savoring time with the people and activities she loves, like bike riding, baking and settling in with a good book.
“It takes time to learn to live with that uncertainty. It’s still a challenge, but I make sure to carve out time to reconnect with the things that make me Annie,” she says. “I’ve had a lot of doctors work really hard to get me to this point. The way I honor their hard work is enjoy my life and live as fully as possible.”