Stef Gayhart (she/they) is an experienced registered nurse, certified trauma-informed wellness coach, and entrepreneur. She is also a single mom, young adult cancer survivor of stage 3 HPV-negative oral tongue cancer, and a fierce advocate for holistic, patient-centered survivorship care.
For almost two months during the summer of 2019, Stef saw multiple providers for a growing, painful mass on her tongue. They all told her she didn’t fit the risk profile for cancer and that she was too young for it at age 37. She was prescribed antibiotics and steroids, to no avail, while her pain and quality of life continued to worsen. She was finally given a CT scan at the end of July and sent to an ENT specialist at University of Maryland Medical Center. Two days after the biopsy, August 7, 2019 she finally received her diagnosis. The phone call came while she was at work as a charge nurse in the critical care unit. That was the last time she ever worked at the bedside.
After her initial surgery she remained in the hospital for one week with a tracheostomy and nasal feeding tube. She was discharged home the day her son started first grade. While in the hospital, she found out that the cancer had spread to a lymph node in her neck, so radiation would be needed. A few weeks after the major surgery, she had a second procedure to finish the grafting of skin from her thigh to her arm, and from early October until November 19th, she underwent 30 rounds of IMRT radiation to her head and neck.
Everyone tolerates radiation a bit differently, and unfortunately, Stef had harsh reactions fairly early on that continued throughout treatment. She lost almost 20 lbs and was consuming roughly 600 calories per day of liquid. She was cachexic by the time treatment ended but by Christmas she was able to maintain her weight and eat a few bites of solid food again! In February of 2020, she received her first negative PET scan and thankfully remains in remission to this day.
Since treatment, Stef has continued to experience long-term effects of radiation therapy and surgery. She deals with lymphedema in her face, mouth, and neck, loss of sensation in her donor arm and part of her face, swallowing difficulties, and some speaking difficulties at times. She also has recurrent spasms in her neck and shoulder causing significant pain when they occur. Despite, and because of, all of those things, she is happy to continue to advocate for better survivorship care.
The life-altering experiences Stef has gone through spurred them to go to grad school and in May 2023, they graduated with a Master of Healthcare Innovation from The Ohio State University College of Nursing.
Stef is passionate about changing healthcare and helping fellow survivors of all cancer types, and volunteers for National Coalition for Cancer Survivorship Cancer Policy and Advocacy Team where they were chosen as a speaker for the Survivor Perspective portion of the Fall 2024 Cancer Policy Roundtable event in Washington, DC.
She also recently joined the Medical Advisory Board of the Maryland AYA nonprofit Ulman Foundation. Stef also sits on the Innovation Advisory Committee for the American Nurses Association and has done work with the Congressionally Directed Medical Research Programs Rare Cancer Research Program as a peer reviewer for scientific grants. In 2023, Stef was chosen as a panelist to be part of a special cohort with the Maryland Cancer Coalition in decreasing disparities in prevention and screening efforts in Maryland. Stef founded Purple Phoenix Survivorship, LLC in early 2024 and has done consulting work with startups and pharmaceutical companies, blending her healthcare expertise with her experiences as a cancer survivor.
Stef believes peer support is an integral part of survivorship and that the power of storytelling has the ability to heal both the storyteller and the listener through shared experiences and feelings.
