Lori Benson: Sharing Private Moments to Help Others
Her daughter, Talula, was 14 months old when Lori Benson, a full-time mother and an aspiring filmmaker living in Manhattan, received a phone call from her doctor in 2003 telling her she had breast cancer.
“Life changes in an instant,” Lori says. One minute she was in “the bubble of new motherhood,” the next, she was grappling with the breast cancer that seemed to run in her father’s side of the family.
At that time, Lori was 38. Her immediate thoughts focused on her own possible outcome and the future of her child. When her husband, an award-winning filmmaker, asked her if he should bring a camera to the doctor’s office, Lori’s first reaction was a firm “no.” But then a day later, as she held her daughter in her arms, she changed her mind. She imagined the real possibility that she might not be around to see her daughter grow up. “I realized it would be something to leave her, “just in case.”
Lori’s goal soon changed to creating a film to help others understand what a cancer patient goes through. As she edited the hours of tape into a completed work, called “Dear Talula,” which aired on Cinemax/HBO last October (national breast cancer awareness month), Lori underwent changes as well. “My mission was acceptance,” she says. “The gift for me that came from the diagnosis was a really big, strong reality check.”
Knowing that an older half-sister and her paternal grandmother had died from breast cancer, Lori went for genetic testing. (Lori’s family on her father’s side is descended from Sephardic Jews. Women with Sephardic as well as Ashkenazi Jewish ancestry are more likely to carry a genetic mutation for breast cancer.) “For me, knowledge is power. I’d rather get bad news so I know how to deal with it,” she says. That news came: Lori had an abnormal gene that increases breast cancer risk. She decided to have preventive surgery to remove her other breast.
In 2006, as “Dear Talula” premiered at the Tribeca Film Festival in New York City, Lori discovered two little lumps in scar tissue under her arm during a breast self-examination. The local recurrence was judged curable; she received stronger chemotherapy and radiation. She lost her hair, which had not happened in her first treatment cycle. Lori had to prepare Talula, who by then was 4 years old, for what was going to happen to mommy’s appearance. In sympathy, the child said she wanted to cut her own long hair.
“Now I know from losing my hair that it is, for sure, the hardest part in terms of maintaining your sense of normal. I went through so much to stay normal-looking,” Lori says, laughing at the recollection. She cut her wig and clipped it up, trying to imitate the look of “my normal messy hair.”
During this time, to further reduce the risk of a cancer recurrence, Lori made the tough decision to have her ovaries removed. “Taking my ovaries out, for me, was a hard thing to do, but I felt empowered in making that decision, knowing that it could make a difference in my survival,” Lori says. Another benefit of that decision: it meant she could take Femara® (letrozole), an estrogen-blocking medication given to postmenopausal women to suppress potential cancer growth triggered by the hormone estrogen. “When I went on Femara, I thought, ‘Ok, now I’m doing everything I can do to reduce the risk of a serious recurrence and to be healthy.’”
Touched by the kindness other survivors had shown her, Lori reached out to help others. “When you get diagnosed with cancer, your friends, your husband, your family, everyone -- they desperately want to help, but they don’t know what it’s like to be in your shoes. There’s something about…having your hand held by someone who knows. I found it to be so comforting,” she says. Now she’s the one making phone calls to newly diagnosed women, giving advice on what to expect. Recalling how moved she was by the healing circle her family and friends formed for her, Lori recently formed a small support group for other women who have the same stage breast cancer she had.
“It’s come full circle,” she adds. “It’s so amazing to give back when you’ve actually been on the receiving side.”
Her film helps her give back even more. At screenings, Lori connects with cancer patients, survivors, and even medical students, talking about the issues patients face. She has also teamed with the Maurer Foundation for Breast Health Education (www.maurer-foundation.org) in a program showing women how to do breast self-examinations and has spoken at many other outreach events. She appeared on The View with Whoopi Goldberg in October to share her story and hopefully inspire other women to do breast self-examinations and have regular clinical breast examinations.
Lori notes that many who’ve been on the cancer journey talk about “some unexpected beautiful thing” that resulted from the experience. For her, it was discovering - that in order to be happy and fulfilled and have the life she wanted “I needed to do the work to make it happen. I realized that I was the driver of my own destiny,” says Lori.
She says she also discovered her own inner strength. “To accept the change in my body [her mastectomy], particularly as a young woman, took a lot of strength. I was somebody who had always been very stubborn. ”How did I get that strength?” she says. “I don’t know. Somehow, my best self surfaced. I saw how strong I could be. And that was such a gift. That helped me move to a place in my life where I wasn’t at when I was diagnosed with breast cancer.”
Today, Lori has a new film and a book in the works. For more information about Lori’s film and how to obtain a free copy (copies are limited), or to learn more about Lori’s upcoming 12-city tour and speaking schedule, please visit her website at www.deartalula.com.