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'It was insane': A battle against 100 miles, cancer

'It was insane': A battle against 100 miles, cancer

When Nestor Paonessa runs on trails, he is always concentrating.

He looks down at his feet, making sure he doesn’t step in a rut and sprain his ankle on the uneven ground. Sometimes, his eyes watch for copperhead snakes, which he often sees slithering across the Al Buehler Trail. On really long runs, he is gauging the best time to slow to a speed-walk.

But no run has demanded more of Nestor's focus than the 100-miler.

In April, Nestor completed the Umstead 100 Ultra—a 100-mile endurance race through William B. Umstead Park in Raleigh. He ran it with a stage IV glioblastoma brain tumor.

The race was a high point during a period of two years that have taken him back and forth from the depths of sadness and fear to the highs of hope and happiness. Now, Nestor is still fighting for his life as he receives treatment at Duke’s Preston Robert Tisch Brain Tumor Center. But he believes he can overcome anything after completing that 29-hour race.

“I can and will conquer brain cancer,” he says.

* * * 

Before Nestor, 36, was diagnosed with cancer in June 2015, life was going well. He had just returned from a hiking trip to Machu Picchu, completed a grueling ultra-marathon trail series and was preparing to move into a new house in Durham with his wife. As an assistant general manager and personal trainer at Empower Personalized Fitness, he was in the best shape of his life.

But then headaches suddenly became common. His eyesight started to appear doubled and tilted. Soon after going to the eye doctor, Nestor was staring at an MRI scan that showed a golf ball-sized tumor on his brainstem, pushing up on the nerves of his eye. The median survival time for someone with that tumor—less than 15 months. 

Nestor's life transformed. He went into surgery days later to remove the tumor, and then started receiving radiation and began chemotherapy. He could no longer drive because of his eyesight. He could no longer work as much. Going on hikes and running—his favorite forms of physical activity—were out of the question.

At first, his spirits remained level—mostly because the whole experience was a blur. Everything was happening so fast and he didn't realize the severity of his condition. But when his hair first started to fall out in the shower, reality struck. And for the first time, he cried.

“Clumps of hair were coming out on my hands,” Nestor says. “And I was kind of like, ‘What the hell is that?’ That image did it for me in that moment. Like, ‘Holy crap this is real. I’m a freaking cancer patient.’”

* * *

On a recent, sunny Saturday morning in May, Nestor is back on the Al Buehler Trail around the Washington Duke Inn golf course. Since the 100-miler, the Puerto Rico native has mostly run a few miles a week outside of his house. But on this day, he is revisiting the three-mile trail where he used to usually run before he had to start training on longer trails.

Running is not fun for Nestor. He says he's not the most natural or fast runner either—his elbows jut out wide from his body, swinging from side to side with each step. But ever since college, he has tried to run a couple of miles every other day for his cardiovascular health.

In 2010, Nestor decided to run his first marathon, and he enjoyed it. Finishing it improved his fitness and made him proud. So throughout the next five years, he continued to run races of different distances. And in February and March 2015, he ran his hardest “ultra” race yet—Tough as Trails, a series of three races ranging from 10 to 40 miles long. 

A few months later, the symptoms started.

After his diagnosis, Nestor spent the next months grappling with the question of how—how could a man in such great physical shape get cancer?

“It’s like, ‘What the hell was all that running for if I was going to get brain cancer anyway?’" he says. “But [my psychologist] helped me look at it from a different frame of mind where it’s because of my high level of fitness going into it that I’m going to beat it.”

And since recovering from radiation, that level of fitness has only risen.

* * *

Running a 100-mile marathon had been one of Nestor's goals since the trail series. His diagnosis initially put that aspiration in jeopardy. But while he was recovering from surgery and radiation, he concluded that running the race would help him fight cancer. If he could finish the 100 miles while on chemotherapy, then he could beat brain cancer, he thought.

When his neuro-oncologist Dr. Henry Friedman heard about the plans, he was surprised. Yet, Friedman cleared him to run.

"He's healed from surgery. [He] recovered from radiation,” says Friedman, who also trains with Nestor at Empower Personalized Fitness. “We didn’t think there was any medical indication to prevent him from doing that.”

Nestor's wife Ashley supported the idea but also had reservations. He was still receiving chemotherapy, and she had heard that extreme running could cause brain swelling. She also felt powerless knowing that she could not be there with him if something suddenly happened while he was running.

“Once I realized it was that important to him…and with everything we’d been through in knowing this might be his only opportunity to do something like that, I kind of just got on board,” she says. "[But] the way I was worried about him…I could only equate that to how I felt when he was in the hospital when he was having surgery.”

After registering for the race, Nestor sometimes had second thoughts too. But he had already paid his $180 entrance fee and made a commitment. He refused to break it. 

He started training about a year before the race. His goal was to run at least 55 to 65 miles per week within a month before the marathon. So on almost every Saturday morning until then, he battled the fatigue caused by chemotherapy and gradually increased his mileage. From 14 to 16 to 18 to 20. And in several months, he was running more than 40 miles—up to 12 straight hours—once a week.

When he wasn't running, he was recovering, and there was little time to do much else on weekends.

“I’m not washing the car, I’m not going grocery shopping," he says. "I’m toast." 

* * * 

The Umstead 100 Ultra involves eight laps around Umstead Park. The race begins at 6:00 a.m. on the first Saturday of April. Most participants keep running with headlamps into the dark hours of the next morning.

Throughout the race, runners make brief pit stops where they can quickly pick up food and change their clothes and shoes. The food includes hamburgers, pizza and other items you would not want to eat on an ordinary run. Nestor says that when running long distances, the body needs fat, protein, calories and carbs.

Nestor's food of choice as he was running—turkey and swiss sandwiches loaded with Kroger’s Organic Mayo. The mayo helped him swallow them faster, the same way water helps competitive eater Joey Chestnut devour hot dogs at the July 4 Nathan's eating contest.

“Most of the time I couldn’t finish it in time before I started running again, so I would just be holding it,” Nestor says.

Holding it until he started walking again. Nobody in the race runs all 100 miles. Rather, participants must gauge how often to walk in order to still finish within the 30-hour time limit.

Nestor decided to speed-walk all of the up-hills and run all of the down-hills and flat surfaces. That worked for the first half of the race, but finishing those next 50 miles was painful. He dealt with a sore foot, blisters and a strained calf muscle. He also had to take a chemotherapy pill around the 70-mile mark. But at 11:30 a.m. on April 2, he finished.

“It was insane. That really hurt,” he says. “Nothing hurt as much as the 100 miles. Not even surgery.”

* * * 

Nestor is not the only Duke brain cancer patient to take up ultra running. Tom O’Donnell became a marathon runner after he was diagnosed in 2009. And Nestor knows other people who have become endurance athletes during or after their treatment.

Friedman has not noticed any link between brain cancer treatment and running but is not surprised that patients would want to be active. It's a way for them to show that their health is back to what it was and that they are just as capable of doing things as other people, he says. 

But Nestor has proven a lot more than that. With each stride during those 100 miles, he showed that his body may break down, but his mind—even with a tumor—will forever stay on course.