HAVELOCK — Nicole McGinnis wants to raise awareness for a particularly brutal form of cancer — and she wouldn’t mind if someone found a cure as well.
The 30-year-old woman is amazingly upbeat for someone who was told, 15 months ago, that she would be dead by now. During her interview she sits at a round table beside a huge platter of bright, yellow lemons. You can’t help but think of the old cliché — what to do when life gives you lemons — because it’s so appropriate here.
McGinnis considered herself in good shape on Dec. 21, 2015, when three seizures in 24 hours told her otherwise. She suffered one of those while having an MRI at the hospital.
“They said to my parents, there’s a mass in her brain. We need to take her somewhere else to look at it,” she said.
The family selected Duke University Hospital. McGinnis would have been flown but the weather was not conducive, so she was loaded into an ambulance and taken for further care. Neurologist Dr. Allan Friedman examined her and operated, telling her parents he expected to find a first- or second-grade tumor.
“They released me the next day after surgery,” she said. “I had staples from ear to ear. I have screws in my head that I can feel on my forehead and I can still feel the scar.”
She was required to stay in a local hotel for three days, and in January, the family sat down with the doctor. He had bad news. McGinnis had a Stage 4 Gliboblastoma, a highly aggressive cancer of the brain that most frequently kills its victims within two years of diagnosis — or in as little as three months, if no follow-up treatment is done.
“The doctor left the room and everybody’s face is either white or crying,” she said. “I said, ‘Look, y’all, I want some Chik-Fil-A right now, and there’s one downstairs.’ They just looked at me. I said, ‘Look, it is what it is. We’re going to fight.’”
McGinnis was given 10 to 14 months to live and set on a heavy treatment plan that included six weeks of daily radiation and chemotherapy, which she had done at CarolinaEast Medical Center in New Bern. The radiation took her hair and damaged her eye, but the hair has grown back.
In addition, she volunteered to be part of a clinical trial called Elevate.
“They took my own white blood cells and pumped them up with what they called ninja vaccines and then put them back (by injecting them) in my groin because that goes fastest to my brain,” she said.
The procedure of getting those blood cells was not simple. Three times she went through a process called leukapheresis. “They hook up both arms with large needles,” she said, “and you have to lay like this for about five hours.” Blood is drawn from one arm, cycled through a machine that removed white cells, then put back into her body through her other arm.
“I definitely believe that my clinical trial had a big impact on my survival,” she said. “Every time I go in there (to Duke University Hospital), which has been once a month since this has happened, they all say, ‘You look so good, you look so happy.’”
But she doesn’t credit only the clinical trial.
She credits prayer and her faith, supportive family and friends, her doctors and her general treatment (she still takes chemotherapy five days a month), and most especially she credits her outlook.
“I think attitude has a lot to do with it,” she said. “You can spend a lot of time wallowing and having self-pity, and I definitely understand that, but I think you have to spend every day you have left enjoying it and getting the most out of it.”
McGinnis said she has had to slow down a little bit, but she said she feels great. In an MRI in March — her 14-month point — there was no sign of tumor growth and the scar tissue was fading. Looking back on the fact she was originally told she would die by this time, she said, “that was a big one for me. We cried tears of joy.”
She declares herself not only tumor-free but carefree. “When you are told you have 10 months to live, it’s all in God’s hands,” she said. “You can’t turn away from that; you can’t be bitter and angry. You have to say, ‘Lord, I want to survive, but it’s in your hands.
“I feel more blessed today than I’ve ever been,” she added. “You have a whole completely different perspective. I am grateful for the most ridiculously small things.”
She is an advocate for awareness now.
“Before I had a brain tumor, I never knew anybody else with a brain tumor. But it’s sort of like when you buy a car: Once you buy it, you see it everywhere.”
She pointed to the fact that cancers are a primary killer of children. According to childcancer.org, it “kills more children ages 1 through 20 than any other disease — more than AIDS, asthma, diabetes and cystic fibrosis combined.”
Cancer incidence in children has risen every year for the last 25 years, with brain cancer being the leading killer in children.
McGinnis is working to raise a $5,000 sponsorship at the Angels Among Us 5K Run and Family Walk, which will take place at the Duke Gardens in Durham on April 29.
The event raises funds for research and clinical trials for the Duke Brain Tumor Program. “The trials are free for the patients who take part in them,” she said — the patient is agreeing to be a guinea pig of sorts, after all — but the trials can cost in the millions to opearate.
The funds also go to help in recruiting research staff and for the purchase of essential equipment and supplies.
You can help McGinnis reach her goal through her Go Fund Me page, www.gofundme.com/livefreenicole.