Two Brain Tumor Survivors Who Found Hope

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Brain Tumor Awareness Month, Elyssa and John Kivus wedding
Elyssa and John Kivus’ wedding was two months away when Elyssa had a seizure on a car ride to Florida. The headband she wore was lovingly crafted by a friend to cover her surgical scar. Photo courtesy of Beth Ely Photography

Closing on his first house – the one he designed with his wife and watched come to life over eight months – should have been Nestor Paonessa’s biggest concern on June 26, 2015.

But, plans change.

Nestor, who had been suffering from constant headaches and double vision, had an MRI that morning. He thought nothing of it.

That afternoon, his doctor called, revealing a golf ball-sized tumor growing in his brain.

“I just decided to leave it in the hands of the professionals,” Nestor says. “I had this problem, and I don’t know how to fix it, but they do.”

Brain Tumor Awareness Month, Nestor Paonessa
Nestor crosses the finish line of the 2017 Umstead 100-mile ENDURANCE Run, assisted by Ashley. He was still taking a daily oral chemotherapy during the 29-and-a-half hours it took to complete the race, stopping halfway to take a dose.

It wasn’t just a brain tumor, it was among the deadliest types. In Nestor’s particular diagnosis – stage IV glioblastoma – only one in four patients survives a year post-prognosis, and the rates drop sharply over time. Just 5% of patients live more than five years, according to The Brain Tumour Charity, an international advocacy group. 

A brain tumor’s physical toll, however, is only half the battle.

“You’ve got the double whammy,” says Dr. David Ashley, director of the Preston Robert Tisch Brain Tumor Center. “Not only are you dealing with the cancer, but you’re dealing with the effects on the person,” he says, ”so many brain tumor patients have changes to their fundamental being – who they are, how they think, their ability to work.”

Take Elyssa Kivus, for example. She had a seizure two months before her wedding in March 2014 and was diagnosed with a stage II astrocytoma, a malignant brain tumor, soon thereafter. Within a week and a half, she had it removed and hasn’t had any recurrences.

But she’s terrified her cancer will return.

“We don’t know enough to know whether or not it will ever come back,” Elyssa says. “So I’m really scared of that and whether it would come back as something else, like a glioblastoma this time.”

Even now, five years removed from her surgery, Elyssa’s experience will always be a part of her life. She still has a hole in her brain. She still has to go to Duke University Medical Center every six months for checkups.

Dr. Ashley says advancements in treating brain tumors has been a decades-long endeavor. One promising treatment, he says, involves transforming the polio virus – Dr. Ashley says the disease “loves to live in the brain and nervous system” naturally – and injecting patients with the altered vaccine. That serves to infect the brain like the virus normally would, only with helpful consequences.

Dr. Ashley says over the next five to 10 years, he anticipates more brain tumor treatments will follow that adapted-vaccine method instead of traditional radiation
or chemotherapy.

For now, both Nestor and Elyssa have chosen to move on with their lives. They’re making the best of their situations.

After having her tumor removed, Elyssa realized an essential human maxim – life’s too short, so make the most of it. She did just that, quitting her job as a divorce attorney and pursuing a photography career, something she’d always dreamed of doing.

“When I started to feel like myself again, I realized how unhappy I was with the work,” Elyssa says. “At that point, a friend asked if I would take pictures at her wedding in August because that was my undergrad degree: photojournalism at UNC.”

Nestor Paonessa and family, Brain Tumor Awareness Month
Three and a half years after Nestor was diagnosed with a stage IV glioblastoma, he and his wife, Ashely, had their baby, Kai.

“I took her photos, and I really loved the experience,” she says, “and then I thought, ‘I guess I could make a business out of this.’ I had missed taking pictures a lot.”

For Nestor, life hasn’t changed so much; it just is what he had always hoped it would be. He and his wife, Ashley Paonessa, are all settled into their home … and now, they have a baby boy, too.

“I just want people to be hopeful,” Nestor says. “They can bounce back and continue living life the way they want to and do things like have a baby, start a family, travel the world, that kind of thing.

“There’s hope.” 

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Hannah Lee

Hannah Lee

Hannah Lee is the assistant editor at Durham Magazine. Born and raised in Winston-Salem, she attended UNC-Chapel Hill and double majored in broadcast journalism and German.

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