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READ MOREPublished on March 9, 2023 in Gray Nation Endurance, Patient, Stories
Kayla S. pushed through the pain as she ran her final miles of the 2022 TCS New York City Marathon through Central Park when a man from the crowd ran up next to her and pointed to his craniotomy scar. He had spotted her Gray Nation Endurance®️ bib from afar and wanted to tell her he had brain surgery earlier that year.
“I showed him my scar and told him I was running because it was my 10-year anniversary,” Kayla said. “He told me I empowered him to keep moving on, and then he asked for a hug. It was such a great feeling.”
For Kayla, completing the marathon was a triumphant accomplishment after receiving a diagnosis of acoustic neuroma, also known as vestibular schwannoma, in 2012 while serving in the U.S. Air Force.
After graduating high school, Kayla left her hometown in California for military training in Texas. While completing 10 months of basic and technical training, Kayla began experiencing migraines that impacted her sleep, but her complaints were dismissed by military health care providers.
Following training, she was assigned to her first duty station at the sprawling Cannon Air Force Base in New Mexico. As part of the intake process, newly stationed service members undergo a complete physical and mental health exam with a variety of specialized physicians.
Following a routine optometrist exam as part of her intake, she received a call informing her that she had a follow-up appointment with an ophthalmologist the next day at a small clinic in town.
The ophthalmologist confirmed there was a great deal of edema, or swelling, in the back of her eyes, causing the optic nerve to bulge. The next day, they sent Kayla for an MRI, which revealed that the swelling behind her eyes, as well as the migraines she’d experienced in training, were being caused by a brain tumor. For Kayla, the diagnosis came as something of a relief.
“I felt like there was a light at the end of the tunnel because I knew there was a diagnosis behind it,” Kayla explained. More symptoms from her past started to make sense. “I had adapted to severe hearing loss that first appeared in high school before becoming completely deaf by the time I was diagnosed. In basic training, I couldn’t balance and walk in a straight line. Everyone in my unit shunned me because they thought I wasn’t trying. We had to learn how to shoot a gun, and I could find the target in my vision, but then I couldn’t focus on it anymore. During my technical training, I started projectile vomiting every morning and lost my spatial awareness at the top of the stairs. It was a relief to have someone take my complaints seriously.”
Adjusting to one’s first duty station is always challenging — new living arrangements, learning a new role, and trying to make social connections. Three weeks after arriving at the base, Kayla also had to juggle steroid treatment and surgery far from home.
“The neurosurgeon told me he was surprised that I was alive right now because it was the size of a small orange and its placement,” Kayla said. “When I woke up [from surgery], my first thought was how numb the left side of my face was, and I could feel that it was permanent. I immediately started crying because reality hit.”
Due to complications from left-sided spasticity, Kayla spent 33 days in the hospital between the ICU, a stepdown unit, and an inpatient rehabilitation unit before she could head home with her mom.
“I was very angry,” Kayla said. “I blamed everybody for what I was, and that’s just part of grief. One day, I told [my physical therapist] I didn’t want to walk or work with her. She inspired me with some much-needed tough love to motivate me to start trying.”
With her newfound determination, Kayla went to physical, occupational, and speech therapy five days a week for six months in addition to radiation. She returned to base, struggling to adjust, and even underwent a second craniotomy to resect additional tumor tissue.
“I was still in therapy and couldn’t do the physical fitness standards that they require,” Kayla said. After a year and a half at the base, the Air Force justified her case to the medical board, and Kayla was able to retire.
Kayla knew she needed to come up with a new career plan after a medical retirement at the age of 21. Fortunately, she knew exactly what she wanted to do.
“I knew when I was in the ICU after my craniotomy that becoming a neuro ICU nurse was what I wanted to do,” Kayla shared. “I wanted to deal with patients in such a critical state and be a critical care nurse. That was my calling.”
Kayla completed nursing school in 2018 and started a career working with patients with brain tumors or strokes in a critical care unit, where she still works today. She pulls from her personal experience to support and care for her patients.
“It’s rewarding in a completely different way from most nurses,” Kayla said. “When I get a brain tumor or a stroke patient with facial paralysis, I might pull down my mask and show them mine. It took me six years from my diagnosis to becoming a nurse before I saw someone with facial paralysis. I just felt so alone, and the hardest part of recovery is feeling like you have no one to relate to.”
Kayla promised herself during recovery that if she could learn how to walk again, she would start running and never stop running.
“Once it hit me that 2022 would be 10 years since my brain tumor, I wanted to commemorate my recovery in a way that shows just how far I had come and how resilient the brain is in recovery,” Kayla explained.
She joined NBTS’s Gray Nation Endurance (GNE) and began training to run the TCS New York City Marathon to support brain tumor research. Training was challenging both physically and logistically.
“I was a newly single mom and not sure how I was going to find time to train,” Kayla explained. “I was determined to hit this milestone because it was for me. Sometimes you have to take time for yourself no matter what your life throws at you. I made running my ‘me time’ instead of coffee and a book in the morning. I love running, and it was such a great stress reliever, so it worked out perfectly.”
GNE team members can access personalized support with a team coach, who will help train them for the race and answer questions. Living in Ohio, Kayla didn’t have hills to train on, so the coach helped her find ways to prepare for the steep hills she’d face in the marathon.
Kayla found community in a Facebook group for GNE athletes running in the TCS New York City Marathon, along with Zoom calls with teammates.
“Even though we were all scattered from California to New York, it was easy to communicate and get to know people,” Kayla shared. “It was so worth it because in a world where you feel so alone, it felt like family. You feel more connected to them because there is that commonality of brain tumors and why we’re motivated to run and bring awareness.”
The GNE team met up the day prior to the race for a short run to shake out the last-minute nerves before marathon day, take team photos, and get to know each other in person.
On Nov. 6, 2022, Kayla crossed the iconic finish line at 67th Street on West Drive on a beautiful fall day, completing her 10-year transformation from a patient waking up from her craniotomy with facial paralysis and left-sided spasticity to a neuro ICU nurse who had now run a marathon.
“When I was crossing that finish line, I had so much relief and happiness,” Kayla shared. “I was so proud to accomplish my dream of proving to myself — and everyone that gave me a poor prognosis — that I could run a marathon.”
Kayla raised more than $3,000 while she trained for the TCS New York City Marathon to help fund best-in-class research that aims to advance better treatments and ultimately find a cure.
“Being a GNE athlete means the world to me,” Kayla said. “Not only was I able to give back to NBTS, but I could do this by running a marathon — a seemingly insurmountable feat that I never thought I’d be capable of when I was in recovery — with a community of athletes who have shared my struggles in some form.”
Apply today to run the 2023 TCS New York City Marathon as a member of the Gray Nation Endurance team and put meaning behind your miles.
TAGGED WITH: brain tumor, Gray Nation Endurance, fundraising, acoustic neuroma, marathon, military