When Cookie Aftergut was treated for breast cancer five years ago, she didn’t have ready access to information outside of her drug and radiation therapies — information such as sound nutrition, exercise, makeup and scalp care for when her hair fell out.
“The doctors, unfortunately, are most interested in giving you chemo and their mission is to get you well. Until you have lost your hair, it’s hard to relate to someone who has gone through it,” said Aftergut, who lives in Dunwoody, an Atlanta suburb.
Though appreciative of the work of oncologists, Aftergut sought to fill a void.
Chemoflage was born.
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In its fifth year, Chemoflage Inc. provides educational forums for women in the early stages of cancer. Chemoflage was first named ChemoChic in 2003 but underwent a name change two years ago.
It has expanded from Atlanta and is having bi-monthly meetings at the John B. Amos Cancer Center in Columbus. Next month, Aftergut takes Chemoflage further afield: to Washington, D.C., and to another new location: Peachtree City, Ga., south of Atlanta. A nonprofit 501(c)(3) organization, Chemoflage teaches women who are newly diagnosed how to best care for themselves — and even presents some awkward topics including low libido and vaginal dryness. Aftergut continues her twice-monthly meetings at Nordstrom’s in Atlanta.
Aftergut has been recognized nationally with two major awards: As a 2006 Yoplait Champion, given to “ordinary” people who improve others’ lives; and the Lyn Wasserman Award at Atlanta’s 2-Day Walk for Breast Cancer in 2005. Wasserman is a three-time breast cancer survivor.
Aftergut is assisted in her presentations by her friend, Claudia Forman, who has had breast cancer twice; and Tracy Dean, a yoga instructor, teaches as well but she was out of town for the recent session in Columbus.
After a sluggish start nine months ago in Columbus in which only a few people showed up, Forman encouraged Aftergut to try again. They returned to Amos on July 15 and had eight patients in the class. Matt Sherer, the new administrative director of the Amos Cancer Center, also attended.
She’s buoyed and thinks 10 would be an ideal number to work with. The three-hour workshop combined detailed nutrition tips from Beth Bussey, a Columbus Regional dietitian; hair and makeup tips; and exercise ideas. It’s all free, and includes lunch, as Chemoflage is supported by grants and donations. The next session in Columbus is Sept. 16.
Aftergut shared with the women, seated around tables, her own story of diagnosis and treatment.
“Attitude is the very best thing. . . . After I got the news, my husband and I spent two hours with the oncologist,” she said. Aftergut, now 65, was diagnosed in 2002 and had a lumpectomy. She then had eight rounds of chemotherapy and 33 radiation treatments.
“I took a walk after my surgery,” she said. “It had been raining and it was misty. I saw a rainbow. It was my sign that I was going to be fine.
“Every time I got stuck, I closed my eyes and I thought about that rainbow.”
Among Aftergut’s tips:
• Patience and permission. Patience because you won’t know how your body will react to the treatments, and so they might take more weeks or months than you were told; and permission to ask for help. “I always was a doer for others,” she said. “Focus on yourself. It’s not being selfish.”
• Involve family and friends in your treatments, as much as possible, so they will know exactly what you’re going through and can face their own fears of it.
• Know that your hair, if you lose it, will come back.
• Stay hydrated.
• Develop a good relationship with your oncologist. “Don’t be afraid to call them. They don’t want you dehydrated or sick.”
• Use hand sanitizers to ward off germs. Among the attendees in Columbus this month, most had breast cancer, and their respective treatment regimens varied. One said she had further complications because of multiple sclerosis.
Another was Ellen Tomlin, a 35-year-old single parent who lives in Harris County. Diagnosed the day after Mother’s Day with non-Hodgkin’s lymphoma, Tomlin just finished her third treatment of eight. Before the day of Aftergut’s class, she’d met for an hour with Bussey, the nutritionist. As she did at the cancer center, Bussey helped her plan a few meals and offered tips on foods to eat and avoid.
“I definitely learned from it,” Tomlin said of the Chemoflage workshop. “I’m going to tell other people about it.”
Tomlin lost her hair after her first chemo treatment and unless she’s out in the sun, she doesn’t wear a covering like a hat or scarf. She got a friend to shave it. The women in the class complimented her looks. “You have such pretty hair,” one said.
Aftergut prefers to talk to women early on in their treatment, to give them as many tools as possible to get them through — yet she’s careful not to overwhelm people with information.
There’s not one particular place she gets her know-how but said she pulls from trusted Internet sites and major cancer hospitals. For instance, when she had cancer she said no one told her that exercise would be beneficial. “Five years ago, they didn’t know. I was fatigued so I just stayed on the couch.”
Aftergut and Forman made the inroad to Columbus through Sissie Dougherty, a case manager associate at Columbus Regional.
About a year ago, Aftergut and Dougherty were seated next to one another at a seminar in Atlanta, and Aftergut told her about the program. Dougherty thought women in Columbus would benefit, too.
If there’s one thing Aftergut tries to impart to the patients, it’s perspective and hope. “I don’t want them to feel so despondent over having cancer. They can go beyond that,” she said. Or, as she told the women here: “I’m a cancer thriver. . . . There really is life at the end of this tunnel.”