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READ MOREPublished on February 21, 2024 in AdvocacyEOY, Survivor, Stories
As a Patient Resource Coordinator at Henry Ford Hermelin Brain Tumor Center in Detroit, Nestelynn Gay works with patients to reduce or eliminate potential barriers to their care, assisting with transportation needs, financial resources, disability paperwork, and support groups. Her personal experience as a patient with a brain tumor in 2013 helps inform the work that she does professionally and as a member of the National Brain Tumor Society’s Quality of Life Scientific Advisory Council.
One December day in 2012, Nestelynn went to work and began experiencing a strange headache that felt like pinpricks. She thought it could be a stroke, so she went to the ER, where they ruled out a stroke but did an MRI as a precaution.
“The doctor said, ‘I think I see a mass,’” Nestelynn recalled. “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.”
At the time, her biggest fear was the anesthesia needed for the craniotomy. The need for surgery wasn’t as concerning because she trusted her surgeon.
“I heard those horror stories of people being aware, but they couldn’t move, so that was my biggest fear,” Nestelynn said. “The morning of surgery, I had a meltdown about the anesthesia and asked them to take my IVs out. I’m going home! I completely trusted my surgeon, so I believed him when he said, ‘That’s not an option. It needs to come out.’ That’s what kept me there.”
Going into surgery, Nestelynn understood that she may have some left-sided 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 about 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.
She was hired in 2017 to be a Patient Resource Coordinator to assist with psychosocial support and aid the social worker. Her position has evolved from there. Nestelynn oversees their Patient Support Group, patient resource and education materials, and much of their social media. As she determines topics for each monthly support group, she considers ideas from a patient lens and what people want to hear.
“That’s been the most powerful experience for me in the work I do now,” Nestelynn shared. “I work with my neuro-oncologist, and he told me it’s OK to self-disclose if I want to. When I meet people, they’re like, ‘You’re working full time? I just got this diagnosis, and I figured that was it for me.’ It’s a powerful thing to let people know that life can go on.”
In 2023, NBTS welcomed brain tumor community members — patients, caregivers, researchers, and clinicians — at two Quality of Life Roundtable meetings to inform NBTS’s work to advance quality of life (QOL) research for patients and their caregivers. Between her personal and professional experiences, Nestelynn shared her unique perspective at both meetings.
“At work, I am laser-focused on treatments,” Nestelynn said. “You want to extend life, and you want to cure this disease. These QOL meetings reinforced how important work around quality of life is. More work needs to be done to really drill down on ways to mitigate issues that cause diminished quality of life and to provide tools for folks to address those issues as quickly as possible.”
After her diagnosis of low-grade oligodendroglioma, Nestelynn would stay up all night reading statistics and other people’s experiences because of her anxiety. She also struggled with managing scanxiety before, during, and after her medical imaging. She now advocates for better mental health resources to support and improve quality of life in patients.
“Anxiety is crippling, especially if you’re dealing with something where all you’ve seen is that people die like Ted Kennedy and John McCain,” Nestelynn said. “That’s why I think education is so important to help one’s quality of life.”
How does Nestelynn view quality of life? She boils it down to satisfaction and encourages patients to consider the following questions to determine what good quality of life looks like to them:
She adds, “Yes, they can resect the tumor and take it out, but if you’re left with significant disability, how does that weigh against your expectations? Many surgeons will say, ‘I can get this out, but you’ll be left with a deficit.’ So decide if you’re OK with that, and if not, what can be done to minimize the deficits that cannot be avoided.”
One of the other ways Nestelynn’s team encourages patients to improve their quality of life is through palliative care. Unfortunately, many people confuse it with hospice and decline to even discuss it as a potential option.
Palliative care is specialized medical care for people with serious illnesses, such as brain tumors, to improve their quality of life by relieving physical, psychological, social, and spiritual concerns and troublesome symptoms. Patients can receive the benefits of palliative care at the same time as traditional neuro-oncology care, like chemotherapy and radiation.
“People do not realize that palliative care is not only hospice,” Nestelynn explained. “Palliative care is just helping you manage your symptoms while you have treatment. It has such a bad connotation, and I wish they would stop talking about it in the same sentence as hospice. One of our neuro-oncologists encourages patients to consider palliative care as soon as possible after diagnosis.”
Wherever she goes, Nestelynn is an ambassador for the brain tumor community, sharing her experience with low-grade glioma and emphasizing the importance of quality of life for all patients.
“You hear about patients like Ted Kennedy and John McCain, but you don’t hear about the patients who are going on to live a full life,” Nestelynn said. “I think it’s important to have those stories out there as well.”
TAGGED WITH: brain tumor, Oligodendroglioma, quality of life