Survivorship Redefined: Nestelynn's Story

Nestelynn Gay reflects on her long journey since first being diagnosed with a brain tumor.

Flash-back to opening day in Detroit in 2016 – Nestelynn’s bright, smiling face adorned an entire building wallscape at the corner of Woodward and Elizabeth, facing into the Detroit Tigers home field at Comerica Park.

Nestelynn’s medical team from the Hermelin Brain Tumor Center at Henry Ford Hospital unveiled a mural to her during a special celebration the week of Tigers Opening Day that year.

An unexpected ER visit and diagnosis

Nestelynn was in the prime of her life in 2012 when she began experiencing a headache that wouldn’t go away. She thought the headache was brought on by extreme stress at work but decided to go the emergency room at Henry Ford Hospital to be safe.

There, an MRI revealed a malignant brain tumor that required surgery.

“I lost it because all I could think of was that when they need to kill somebody off in a movie or a soap opera, they give them a brain tumor,” she said.

“I always tell people I got up, I went to work in the morning and I came home with a brain tumor,” she says.

Nestelynn was diagnosed with a glioma, a type of brain tumor, in the frontal lobe of her brain. DNA from her tumor revealed that with surgery, her tumor was curable.

Using a real-time technique called intraoperative mapping to track the tumor during surgery, Nestelynn’s Henry Ford neurosurgery team was able to remove the tumor while protecting normal brain tissue.

“Our goal is not just that people survive but come out with something positive and can live a full life,” says Tobias Walbert, M.D., neuro-oncologist and co-director of the Hermelin Brain Tumor Center at Henry Ford Hospital.

Going into surgery, Nestelynn understood that she may have some challenges when she woke up, and inpatient rehab might be needed. Waking from surgery, it was as if Nestelynn’s left side didn’t exist. Her brother could pick up her arm and let it flop back down without any feeling. It ultimately took Nestelynn nearly nine months of inpatient and outpatient rehab to improve strength, sensation, and then return to work as a brand manager — a very physical job — in Nov. 2013.

Upon her return to work, Nestelynn began volunteering in the brain tumor community, starting with the hospital where she once had surgery. As her current employer’s business model began to shift, and her passion for helping patients with similar circumstances began to grow, Nestelynn felt it was time to make a career change from her brand manager role and work in the brain tumor field.

12 years of survivorship and personal growth

Since the removal of her brain tumor, Nestelynn wanted to take the hope she had for a healthy future and make a difference within the community.

She began by leaving the 13-year position she held and started a new role as Neuroscience Patient Resource Coordinator at Henry Ford Health, working directly with those experiencing brain tumors at the Hermelin Brain Tumor Center. Additionally, Nestelynn decided to further her education by pursing two master’s degrees in administration and strategic communication.

To further provide hope and ensure that all patients receive the best experience at Henry Ford, Nestelynn has taken on roles with various brain tumor advocacy organizations, including the Brain Tumor Support Group and Family Advisory Council at the Henry Ford Hermelin Brain Tumor Center.