Advocate Spotlight November 2021 | Stef Gayhart
Stef Gayhart was building a life for herself and her son, when she was blindsided in August 2019 by a rare disease diagnosis: Stage 3 tongue cancer.
At the time, Stef was a healthy 37-year-old working as a critical care nurse. She fought for her independence, and then it all came crashing down with one phrase: “You have cancer.” Stef underwent two surgeries, had a week-long hospital stay, and completed six weeks of daily radiation treatments, leaving her with lifelong side effects.
She felt extremely fortunate to have health insurance through her employer, but the disability benefits only covered so much. Stef stressed constantly about child care costs and paying her medical bills on top of regular bills, and she worried what might happen if another thing were to go wrong. Although she received financial support from friends and family, she hated asking for help. “On top of the immense stress of cancer and being a single mother, I had these huge financial struggles to deal with,” she said.
Stef posted openly on Instagram about her experience and engaged with others through her “Young Adult Cancer Survivors” Facebook group, which has almost 500 members worldwide. She recently joined two other women speaking at The Swallows Virtual Head and Neck Cancer Conference on a panel about quality of life after a glossectomy — the surgical removal of all or part of one’s tongue. The survivors met after finding each other on social media and founding Young Tongues, a group that supports young adult cancer survivors with rare forms of head and neck cancers. Being vulnerable about her experience allowed Stef to serve as a GameChanger for the Ulman Foundation and perform consumer reviews through the Department of Defense’s Rare Cancers Research Program.
Stef, a nurse educator for LifeBridge Carroll Hospital, found the National Coalition for Cancer Survivorship (NCCS) through social media. With her treatment complete and a story in tow, Stef sought ways to help others experiencing the same issues. When Stef saw NCCS’s Cancer Policy and Advocacy Team (CPAT) program, she thought, “Wow! This really aligns with what I want to accomplish both professionally and personally,” and immediately joined.
The greatest lesson Stef learned in her Master’s in Healthcare Innovation program at The Ohio State University is that the best change comes from the ground up. She believes the idea that change should happen from the top down is skewed. People on the ground use their lived experiences to help them understand the needs of others in similar situations. Survivors have the ability to speak on behalf of those who are unable or who don’t have the time or the language to do so. Survivors know what other survivors need; they know what may help, and they are the people who can make the greatest impact. Stef used her experience with financial struggles during treatment to advocate for the inclusion of paid family and medical leave in the Build Back Better Act with other patient and caregiver advocacy organizations.
Stef knows there are others like her—young adults who enjoy nature, spending time on the water, and watching movies with their family—who are hit with an unthinkable diagnosis. Her advice: maintain a que será, será attitude. Whatever will be, will be. She encourages cancer patients and survivors to lean into the fact that they have full control over their reactions, lean on their support systems, and always advocate for themselves. “Your medical team knows the best treatment for the disease, but not for how the disease affects you,” she said.
Find Stef on social media:
LinkedIn: Stephanie Gayhart