For more than 20 years, Bonnie Donihi has been fighting ovarian cancer both out in the community and inside her own body. As she prepares to retire as the founder and executive director of the Women & Girls’ Cancer Alliance, find out who will take up this critical cause for local women in need.
An Ohio native, Bonnie Donihi came to Florida in 1983. She was president of a specialty advertising agency. She was also unusually grumpy, overly tired, and felt terrible, Bonnie recalls. She assumed it was menopause. For her 47th birthday, Bonnie received a diagnosis of ovarian cancer.
“I had all the symptoms [of ovarian cancer], but because women don’t know them or aren’t told, I had no idea,” Bonnie says.
With a cancer fight looming, Bonnie sold her business, but she found her mission.
In the years since, she has survived ovarian cancer three times. Along the way, Bonnie has testified before Congress, helped drive federal and state legislation to support women’s cancer causes, and formed a formidable local network of awareness, fundraising, and support that has brought the issue of gynecologic cancer to light.
Bonnie founded the Ovarian Cancer Alliance of Florida around her kitchen table in 1997. In 2014, the Longwood-based organization changed its name to the Women & Girls’ Cancer Alliance (WGCA). The group has not only helped thousands of cancer survivors, but has also supported the loved ones of those who’ve lost their battles. Today, WGCA is the only organization in Central Florida that promotes and advocates for good gynecological health in both women and girls.
And the alliance does it in no uncertain terms. WGCA is famous for its awareness-raising T-shirts that ask women, “Yoo Hoo! How’s Your Hoo Hoo?” The alliance also encourages women to take the Panty Pledge and schedule a gynecologic appointment during Gynecologic Cancer Awareness Month in September. WGCA makes sure women know that Pap smears only detect cervical cancer, and that gynecologist visits are imperative to their health. The alliance also educates the community about the often-subtle symptom of ovarian and other women’s cancers, like those Bonnie experienced in her mid-40s.
Bonnie’s Lowke Lunch Bunch gatherings are the stuff of legend throughout Florida. Every month, women (and men who’ve lost the women they love) gather at various places in the state to share support and stories. The lunches celebrate survivors, thank caregivers, and give friends and supporters the opportunity to learn more about WGCA and its programs.
Every Mother’s Day, the alliance hosts a teal-themed 5K to raise funds, and since 2007 Bonnie and other volunteers have spoken to more than 6,000 nursing students with the University of Central Florida Nurses Education Initiative about early symptoms of gynecologic cancers.
“Nurses are such an integral part of this fight,” says Bonnie. They can identify subtle symptoms, providing another layer of defense.
But Bonnie, whose parents and brother died early of heart attacks, has now had one of her own. She is stepping down from the helm of the WGCA, and the Florida Hospital Foundation is stepping up. The foundation will take over operations of the WGCA and continue its mission to raise awareness, funds, and support for women and girls with gynecologic cancers. Bonnie will work closely with the Florida Hospital Foundation over the next year to ensure a smooth transition. Both Bonnie and the Foundation know there is much work still to be done in their fight.
“It is very lonely when you are diagnosed,” says Dr. Robert W. Holloway, Bonnie’s longtime gynecologic oncologist at the Florida Hospital Cancer Institute. “All gynecologic cancers combined only rank fourth in cancer for women, behind lung, breast, and colon. Consequently, there is a lack of NIH [National Institutes of Health] funding. Bonnie’s organization has been a survivorship lifeline for many.”
Courtney Staup with the Florida Hospital Foundation says women cannot just rely on testing to detect gynecologic cancers, as they can with other types of cancer. This has earned gynecologic cancers the reputation as “a silent killer.” But thanks in large part to the efforts of the WGCA, the tide is turning.
“Monitoring one’s own signs and symptoms are key,” says Courtney.
From self-exams through treatment, Bonnie believes women should not be passive. After her first cancer diagnosis and surgery, Bonnie felt like her communication with her doctor was off. After switching to Dr. Holloway – who recommended a second operation – it was discovered Bonnie’s cancer had spread to five places. Bonnie stresses the importance of having a qualified gynecologic oncologist to treat cervical, ovarian, uterine, vaginal, and vulvar cancer. Her advice to women at the beginning of a battle with cancer is simple: ask questions and expect your doctor to listen.
“If a dry cleaner shrunk your favorite sweater, you’d get a new dry cleaner,” says Bonnie. “But women will go to a doctor they don’t like, and they will stay forever and not move because they don’t want to offend them. My suggestion is, offend them. It’s your body!”
As Bonnie looks ahead, she knows some things will change. The monthly Lowke Lunch Bunch gatherings may not continue, but the reach of the Florida Hospital Foundation will help more women and girls learn about gynecologic cancers and what they can do to prevent and detect them. To pay tribute to Bonnie, the Florida Hospital Cancer Institute will hang her portrait in its Walkway of Hope and name a space in its gynecologic oncology clinic in WGCA’s honor.
“Bonnie [battled her cancer] long enough to benefit from several new therapies that were not available when she was first diagnosed,” says Dr. Holloway. “She could have given up anywhere along the way but would have missed the subsequent opportunities.”
“She is incredible,” Courtney says of Bonnie. “She’s shown the importance of support groups, connecting networks of survivors, and sharing information, best practices, and clinical trials.”
“We cannot approach a medical disease and not talk about it openly,” Bonnie says, describing why she and others first started the WGCA. “It’s getting better.”
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