A Shocking Glioblastoma Diagnosis, Dreams Not Deferred

When actress Nicole Schalmo was diagnosed with a brain tumor in 2018, she took it as her cue to become exactly the person she’d always wanted to be.

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Nicole Schalmo
On living life with glioblastoma, Nicole Schalmo says she focuses on what she can control.Photos Courtesy of Nicole Schalmo

When Nicole Schalmo went to bed on May 2, 2018, it was a night like any other. The then 31-year-old actress turned off the lights and drifted off to sleep, reminding herself that she had a dentist appointment the next day.

But when she woke up, she wasn’t in her bed, or even in her apartment: She was inside an MRI machine at the hospital.

“I later found out from my then fiancé, now husband, that I’d had a seizure in bed,” she reports. “I then had two more seizures — one in the apartment, one in the ambulance. The hospital did a CT [computerized tomography] scan, which found a mass in my brain, and then they put me in the MRI machine, which showed a tennis ball–sized tumor.”

Doctors at NewYork–Presbyterian/Columbia University Irving Medical Center performed an emergency craniotomy, removing a piece of bone from the skull in order to cut out the tumor. A tissue sample went to the lab for biopsy. “I was so sure it wasn’t going to be cancer,” Nicole says. “I kept telling people, I got through the hard part, now I just need to have someone tell me it’s not cancer.”

A week or so after she was released from the hospital, she got the news: The tumor was a glioblastoma — the most aggressive type of brain cancer and the hardest to treat, with an average life expectancy of 13 months.

Nicole did get one piece of good news. Lab testing revealed that her tumor was IDH-mutant, meaning it had a specific mutation (a genetic alteration) that made it more responsive to radiation treatment. The IDH mutation occurs in about 10 percent of all glioblastoma cases, mostly involving younger people. For those patients, the average life expectancy is 31 months.

When Nicole heard her prognosis, she didn’t start planning her funeral — she kept right on planning her wedding. And she thought hard about the other things in her life that really mattered to her. This definitely included acting, even though memorizing lines could become more challenging given the short-term memory loss that is a common side effect of both brain cancer and brain cancer treatment.

She also resolved to fight for her life. “Unfortunately, the language that my doctor uses is, ‘When the tumor recurs,’ Nicole, who has now received 12 months of treatment, says. “But I refuse to accept ‘when’ as a fact. I expect to surpass all odds, and I have told my family that cancer obviously has no idea who it’s messing with.”

What Doctors Know About Glioblastoma

Nicole, now 32, is far younger than the typical glioblastoma patient, but this type of brain cancer is not unheard of at her age. “If you plot the median age on a graph, it has a peak in the early sixties, but it has a tail that stretches out pretty far,” says Manish Aghi, MD, PhD, a neurosurgeon and scientist at the University of California in San Francisco and a member of the American Brain Tumor Association’s Alumni Research Network. “A large-volume medical center might even see two or three pediatric patients per year.”

Nicole’s father died from stomach cancer when she was 14, but that doesn’t necessary show an inherited genetic link. “It’s definitely something a clinician would ask more questions about,” says Dr. Aghi. “That said, most glioblastoma cases are sporadic rather than familial” — meaning they occur spontaneously, for no known reason.

About 25 to 30 percent of people with glioblastoma learn they have the disease because of a seizure, just like Nicole. “Other symptoms can be devastating headaches,” says Aghi. “In older patients it can be forgetfulness and difficulty performing daily tasks.”

Glioblastoma is an especially difficult cancer to treat surgically. While other cancers grow in what he calls a fairly “well circumscribed” way, glioblastoma spreads more like a bacteria grows. Aghi describes it as “a contamination of the brain.” Surgery, he says, “can only take out the primary mass — the brain is still contaminated centimeters beyond that.” Glioblastoma cells also have powerful defenses against drugs, evolving resistance to treatments very quickly.

The IDH mutation gives people with glioblastoma an advantage: “If you look at patients who make it to five years, there’s a good chance they were IDH-mutated,” says Aghi.

A number of companies are investigating drugs targeting IDH mutations, but there have been no breakthroughs yet. For now, Aghi is most intrigued by research focusing on the more ubiquitous TERT-promoter mutations (the TERT gene increases longevity in cells), found in close to 80 percent of wild type glioblastomas and almost 20 percent of IDH-mutant glioblastomas, according to the World Health Organization. “There are companies that are actively working to target this mutation, but clinical trials are probably two to three years away,” he says.

Living Life With Brain Cancer — Her Way

After her diagnosis, Nicole immediately began a regimen of radiation combined with chemotherapy. Her mother flew from California to help during the early stage of treatment. Then, when her mom had to go home, her fiancé took time off from work to be with her.

“Of course it’s scary having brain cancer, but in a way I’m so grateful that I had a lot more time to spend with my family and to plan my wedding,” Nicole says. “Everyone thought we would postpone, but I made the decision to go ahead.”

Her wedding day was November 3, 2018, six months and a day after that night in the ER. “I was a bald bride!” Nicole says. “When I lost my hair during radiation everyone said, don’t worry, you can wear a wig to your wedding, and I said, absolutely not! I’m an actress and I know how uncomfortable wigs are. I thought, I don’t want to be uncomfortable at my wedding — I’d rather be bald. Going bald felt really powerful too.”

Nicole Schalmo
Nicole Schalmo said opting against a wig for her wedding felt "powerful."Photos Courtesy of Nicole Schalmo

Controlling what she can has become a hallmark of her life with cancer. “With my husband I have formed our own little holistic approach,” she says. “I have been on a whole-foods vegan diet since I was diagnosed. We’ve been doing cold-pressed juices. It’s very calming to focus on the things I can control — it can be as small as having my little juice in the morning. I can go to my yoga classes, I can meditate now and then, I can take my vitamins.”

As for her acting aspirations, she describes her cancer diagnosis as a wake-up call. Before, she’d been struggling to succeed in the notoriously unstable profession while working a nine-to-five job to pay the bills, and wondering if she had chosen the right path. “But when I learned I had cancer, I began thinking, oh my gosh, I only have two years: What do I do with this life? I knew acting was my passion and that as soon as I was able I was going to be back on stage.”

Pursuing Dreams, Taking Charge of Her Future

And then an opportunity presented itself almost out of nowhere. Blake Allen, a playwright she’d met in 2017, called to invite her to audition for a production he was doing for the New York City Theater Festival, a thriller called Kelly [1955].

“And I told him, ‘Funny story, I don’t have any hair!’” But he asked her to come read for the role anyway. “And it was a beautiful audition, just because I was so present and in the moment — and I booked it!”

Memorizing lines, she discovered, was not as tough as she’d feared. “I went about it as I always have, and there must be some sort of neural pathway that bypasses short-term memory, because I was able to learn the lines exactly the way I did before — it just took a little longer.”

She finished a round of chemo the day before the play opened. She performed wigless, craniotomy scar on full display. Afterward, she recalls, “I felt incredible! I felt exhausted!”

Nicole’s plans for the coming months include finishing her last few rounds of chemo, getting back into running (she recently completed a 5K fundraiser for the American Brain Tumor Association), and looking for any acting opportunities that present themselves. She’s sharing her ups and downs on CaringBridge, a site where people can share updates on the course of their treatment, where her nickname is Titanium Cranium.

“I was always ‘the pretty brunette,’ and now it’s very different — and I feel a weight has been lifted,” she says. “I don’t feel the pressure to be any kind of person other than exactly who I am, and that’s the best gift this experience could have given me. I wish it didn’t take cancer to do it, but I hope that through telling my story I can help other people get there too.”