Month: April 2019

By Molly Smith

Cindy Dewey stood up with the sunrise, pulled a blonde wig over her scalp, hid any signs of discomfort with a dab of makeup and drove to work.

She felt her face flush when colleagues examined her more than usual before she gave a presentation; their gaze darted from the bags under her eyes to the sweat glistening on her forehead.

“You look a little tired. Are you feeling OK?” one asked.

 “I’m totally fine,” she said with a smile. 

Her feet could barely fit in her shoes that day. She was swollen from head to toe. 

The night before, she made ice packs with Ziploc bags to soothe a skin rash, took steroids prescribed to relieve the itching and used what strength she had to Google how much Benadryl was safe to ingest.

The swelling crept up to her neck and slowly began to suffocate her. She laid awake in bed, staring at the paint on her walls and wondering if that was the last time she’d get to look at them. 

Dewey was diagnosed with stage one breast cancer in 2017 at UNC Hospitals. She stopped after three rounds of chemotherapy because of a severe allergic reaction. She believes her symptoms were overlooked, her diagnosis was oversimplified and her cancer overtreated.

Diagnosis: ignored

It started with an ordinary visit to the doctor. As many cancer stories go, Dewey didn’t suspect anything was wrong. She exercised every day. She watched what she ate. And like most 52-year-old women, she dreaded mammograms. 

A few women in her life had been affected by breast cancer, but none in her immediate family, she would tell the nurse after the screening. Then came the waiting. 

Waiting as women came and went with their results. 

Waiting and realizing that she was in the cancer area, spotting bald heads. 

Waiting and worrying and watching the clock.

“It’s probably nothing,” a nurse finally said, “but there’s a small growth.”

Moments later, she was looking up at a slew of women standing over her, holding her trembling hand through the biopsy that revealed she had cancer. It was treatable, it was early and the tumor was the size of a pencil eraser.

But in the space of a day, that little nothing became something that affected her whole life. Before long, something turned into everything that she agonized over for the next year.

Two weeks later, Dewey had surgery to remove the tumor and see if the cancer spread – it hadn’t. Her oncologists were convinced she wouldn’t need chemotherapy. Maybe a few weeks of radiation at most, they assured her.

Her two children celebrated in the bright consultation room. They thought the battle had begun and ended all in a month. They watched the surgeon promise a quick recovery with light in their eyes as they slowly removed their armor. 

Then, Dewey was asked to take the test. The Oncotype DX test is for patients just like her, with early stage, low-risk cancer. It uses genes to assess how likely the cancer is to return.

“Wouldn’t you want to have all the information available?” Oncologist Carey Anders urged. 

Her results read “33” in bold, black digits. Scores 31 and up signal a high probability of recurrence, and lower than 18 is safe. Suddenly, her life was in danger again.

“They were telling me I would die if I didn’t do the treatment,” Dewey said. “It was like night and day.” 

Dr. Hyman Muss, another breast cancer oncologist at UNC, said that when the value of chemotherapy is great, oncologists try to talk patients into it. But it’s always a mutually agreeable decision.

Dewey agreed to four chemotherapy sessions. 

The next time she visited the hospital, the nurse prodding her arm for an IV didn’t believe she was allergic to the adhesive tape. She broke out in hives. At a later visit, doctors ignored her after she insisted the anti-nausea medication gave her a blinding headache. It was the main side effect of the drug.

As her energy drained, she laid down in the waiting room before one of her last visits.

“Must be nice to rest,” a nurse said as she passed by.

“Must be nice to not have cancer,” Dewey thought.

She developed a self-titled syndrome she called “bitch cry,” the phenomenon of getting assertive when not listened to, then falling into a depressive, guilty state.

“I ended up with this continuous knot in my throat because I didn’t want to have to be that way,” she said. “I wanted them to take care of me.”

After Dewey’s allergic reaction, Dr. Anders warned against stopping chemotherapy before the sessions were over. Allergists would later tell Dewey that it was threatening her life. 

If she could go back in time, she wouldn’t agree to the treatment.

The bumpy road to recovery

Dr. Muss is confident that the cancer hospital has a “more is worse” approach to chemotherapy. He said that treatment is a balance of the benefits and risks.

“I’ve been doing this for 45 years,” Muss said, “and we’ve learned so much about who doesn’t benefit from chemo.”

Its purpose is to kill any cancer cells that may have spread, he said. But there’s no test to know the exact possibility of a relapse.

“We don’t know that chemo actually reduces the chance of cancer coming back,” Dewey said. “We’re loading chemicals into people’s bodies thinking that’s what’s doing it.”

Bari Sholomon had a similar diagnosis: stage one, didn’t spread, aggressive tumor determined by the test, chemotherapy.

Dewey knew Sholomon as her daughter’s former high school counselor. Then, as a fellow cancer survivor. Then, a workout buddy.

The two participated in Get Real and Heel at UNC – an exercise-based strength program for early-stage breast cancer patients who finished chemotherapy. Physical therapists train the survivors to rebuild their stamina and use exercise as a healing tool, both mentally and physically.

“I stayed with them for three or four years after I stopped chemo,” Sholomon said. “I got my strength back that way.”

Dr. Claudio Battaglini co-founded the program in 2004 after studying the connection between exercise and quality of life in cancer patients. Breast cancer survivors who exercise regularly are 40 to 50 percent less likely to redevelop the disease. 

“They really feel that their lives have been stolen from them, so we help them regain a sense of empowerment,” Battaglini said.

Dewey won the battle for her life, thanks to Get Real and Heel and therapy. She still doesn’t know what went wrong in her treatment plan. Maybe it was just protocol. Maybe it was ego. Maybe it was overprotection.

“Regardless, I should’ve given myself permission to trust my instincts and use my voice,” she said. “I gave away my power. But now I’m stronger.”

Edited by Johnny Sobczack and Spencer Carney

By Molly Horak

“Two minutes!” Walker Peterson roars as the opening verse of Ozzy Osborne’s “Crazy Train” blares over the loud speaker.

Greg Gehab grunts, wipes away a drip of sweat with his forearm, then picks up the pace. “One, two, one, two,” he yells back as he strikes the punching bag with all of his strength.

For 120 grueling more seconds, Gehab and the seven other men and women enrolled in Peterson’s Friday morning boxing class attack their bags with a vengeance only the most determined boxers can muster. “Quitting is never an option,” one of the participants muses as the athletes are finally rewarded with a water break at the end of the round.

The Friday morning class isn’t training the participants to fight an opponent under the bright lights of a boxing ring. No, they’re fighting a much more dangerous enemy, the one slowly wearing away at their brains.

This is a Rock Steady Boxing class, a form of physical therapy for patients with Parkinson’s disease. Boxing provides a way to fight back, says Gehab.

Gehab had never heard of Parkinson’s disease, at least not until 2008 when he received the diagnosis that would change his life.

He called his wife, crying. In order for the disease not to kill him, his doctor said, he had to start working out.

A life-interrupting disease

Parkinson’s is a neurodegenerative disease that occurs when brain neurons that control movement become impaired and die, according to studies conducted by the National Institute of Health. When these neurons die, they produce less of the chemical dopamine, leading to symptoms such as tremors, stiffness of limbs, slowness of movement and impaired balance and coordination.

There is no cure for Parkinson’s, which affects more than 10 million individuals worldwide. However, studies have shown that increased high-intensity exercise can slow the progression of the disease by training the brain to use dopamine, which is released during vigorous exercise, more efficiently.

Gehab’s neurologist never told him what sort of exercises to do. After his diagnosis, he began regularly attending his local YMCA in Nashua, New Hampshire, yet didn’t feel like he was getting anything out of his time in the gym.

In 2011, Gehab’s health took a turn for the worse when he was diagnosed with prostate cancer. The cancer was removed, and he entered into remission, but Parkinson’s still plagued him. His workouts weren’t doing much to increase mobility, and his medicines weren’t working. He was losing morale.

Rock Steady heads east

His daughter, who was living in Indianapolis, had heard of a new program designed to help Parkinson’s patients: Rock Steady Boxing.

Skeptical, Gehab caved into his daughter’s pleading and agreed to attend a class.

“They warmed me up doing something like this: running, punches, stretching, core. I thought I was going to die,” Gehab said. “But by the end of the class, I knew I had found what I wanted to do.”

His next goal? To bring Rock Steady to the East Coast.

Gehab completed the certification to become a Rock Steady Boxing coach in 2013. It took him a year, but he finally got one person to participate in his program. From there, the phenomenon spread.

“Everyone laughed at me; they thought I was nuts,” he said. “Boxing helping Parkinson’s patients? They were incredulous. But after working with a boxing coach, he could see how fluid I was, how it was helping.”

When Gehab and his wife moved to Raleigh in 2016, the Triangle became his next target. Within a few months, he had found a home at Title Boxing Club in Cary. The first class had 20 boxers, Gehab recalls. Now, Rock Steady Triangle offers classes in Cary, Raleigh and Chapel Hill and serves over 120 participants.

“Who are we? Rock Steady!”

There’s no such thing as a typical Rock Steady class, said Walker Peterson, a Rock Steady Boxing coach at Title Boxing Club in Chapel Hill. Workouts tend to be slightly slower-paced and more methodical than the classes usually offered but contain the same basic principles: stretches, core work and boxing combinations.

Sets of exercises are structured in the traditional boxing-round format: three minutes of an intense set of exercises followed by a one-minute rest period. Boxers are encouraged to yell out numbered sequences that match the type of punch thrown — one for a left jab, two for a right cross and so on. This help memory and vocal strength, which are common symptoms of the disease.

It’s not a typical workout, Gehab said, but it’s the kind of workout he likes. He needs to be pushed to the point where he doesn’t break.

“I need to do it; I have to do it because first and foremost, I’m a Parkie too,” Gehab said.

In the three years since Rock Steady first opened its doors in the Triangle, it has seen enormous growth, said Jessica Shurer, a clinical social worker and coordinator with the UNC Movement Disorders Center.

The Triangle is uniquely positioned for a vibrant Parkinson’s community. Both Duke University and UNC-Chapel Hill’s Schools of Medicine are home to Movement Disorder Clinics designated as a Parkinson’s Foundation Center of Excellence, meaning they provide the highest level of care and outreach for Parkinson’s patients, said Diana Parrish, who works with the Parkinson’s Foundation.

Shurer, who worked with Gehab to bring Rock Steady to the area, said she sees patients and focus-group participants have an increased range of movement and stronger relationships after enrolling in a boxing class.

“People really gravitate to the energy of it, the ‘rah-rah’ way to fight not only the bag but their disease,” Shurer said. “There’s this component of friendship and camaraderie that everyone is in this fighting together.”

“Who are we?” Peterson bellows at the crowd jogging laps around the gym floor.

“Rock Steady!” they yell back, their voices wobbly with exhaustion as the workout comes to an end.

“Who are we?” Peterson asks again in a voice tinged with the mix of encouragement and skepticism that only a coach at their peak intensity can summon.

“Rock Steady!” the group says louder, with more energy.

“What do we do?”

“Fight!” The group erupts in a series of grunts, whoops and hollers, a primal release of the frustrations built over the last few days.

In his red tank top emblazoned with the Rock Steady logo and the mantra, “fighter coach,” Gehab pumps his fist in the air a la “Breakfast Club” and smiles.

“I see people come in and have lost their confidence because Parkinson’s can take your confidence away,” Gehab said. “But boxing, it helps bring the confidence back; it gives hope back. You can do things you hadn’t been able to do before.”

“It’s saved my life.”

Edited by Jack Gallop and Sara Hall