BRATTLEBORO-Last February, local musician, circus arts performer, visual artist, and hair stylist Re Sheppard was in the throes of treating an aggressive lymphoma for the second time.
Fast-forward to December, and Loretta Palazzo, owner of Boomerang, a clothing store on Main Street, sent out an update: "Re Sheppard is back at work a couple of days a week!"
What happened in the intervening 10 months is a story of modern medical miracles and a woman who simply refuses to give up.
In the spring of 2024, Sheppard was exhausted and fighting for her life. After six rounds of chemotherapy, friends were raising funds for Sheppard and trying any way that they could to bolster their buddy.
Her voice quiet, her energy low, she shared the story of some of her battle with the cancer that simply wouldn't relent.
"I'm trying to get into this treatment program, but so far the insurance company isn't willing to pay for it," a worn-out Sheppard told The Commons at the time ["Stylists unite for a friend in need," News, Feb. 28, 2024].
Now, she likens the story to being pushed off an enormous mountain.
"I'm at the bottom of the mountain again, and I'm starting to make my way back to the top," said a much-more-energetic-sounding Sheppard recently. "I'm so grateful that I have this chance."
Climbing back from the brink
Sheppard credits CAR-T cell therapy for bringing her back from the depths of illness.
"CAR-T cell therapy has been around for about 10 years," she explains. "It's amazing stuff."
The treatment is found only in a few hospitals across the United States, but one of them is Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire.
"I'm fortunate that I didn't have to get on a plane and travel across the country to receive this treatment," Sheppard said. "It takes months and months. I was lucky that the hospital was close enough that family and friends could be present for me. That was so awesome."
According to the website of the federal government's National Cancer Institute, "The 2000s marked the emergence of targeted therapies […] that find and kill cancer cells by homing in on specific molecular changes seen primarily in those cells."
CAR-T cell therapies were approved by the Food and Drug Administration (FDA) in 2017 and are approved for treatment of blood cancers like the lymphoma that Sheppard has.
The costs can rise to $450,000 or more per patient, but they have become "a standard treatment for patients with aggressive lymphomas," according to a quote on the website from Dr. Steven Rosenberg, chief of the surgery branch for the National Cancer Institute's Center for Cancer Research.
In the end, Sheppard was able to access the essential treatment with some insurance relenting and community support, including a 2023 benefit concert at the Stone Church and a crowdfunding campaign, spearheaded by Palazzo, that raised more than $41,500 from 480 donors.
'It was kind of epic'
For Re Sheppard, the new treatment meant weeks and weeks of advance testing involving bone marrow biopsies, brain MRIs, heart and lung tests, and more.
"I had to have many tests so that my physicians could track everything that was happening in my body later on," she said. "They made a baseline for my entire physiology."
As the winter passed, Sheppard, while looking forward to the next part of her treatment, said she was sicker than ever.
"I was down to 100 pounds. I looked awful. All my body hair was gone. I looked like a freaking alien," said Sheppard, who noted that she has since recovered her body weight.
By April, Sheppard was ready for the harvesting of her T-cells, white blood cells that help protect the body from infection and may help fight cancer. She was hooked up to a machine that filtered every T-cell from her entire blood supply.
The T-cells were sent to a specialized lab, where they were injected with a virus that caused them to grow new receptors designed to hunt down the aggressive lymphoma cells in Sheppard's bloodstream.
It took over a month for this process to be completed as Sheppard, very ill, waited for her T-cells to come back from the lab.
"By the end of May, they infused me with my T-cells, which arrived in this specialized dry ice. It was kind of epic. They rolled in this big machine out in a fog of dry ice. It was amazing," she recalled.
Her modified T-cells were thawed and slowly infused back into her body.
When the cells went to work, they released cytokines, which the American Cancer Society describes as "small proteins that are crucial to controlling the growth and activity of the immune system." The side effects of the treatment are very dangerous and can include seizures and death in extreme cases.
"Basically, the cytokines are fighting the lymphoma, which can cause a 'cytokine storm,' which for me caused dangerously high fevers," said Sheppard, who had to be put in an ice bath at one point to lower her temperature.
"All I can remember is how cold the water was, but it did eventually break the fever," she said.
There were other side effects, too - enough that Sheppard had to spend a month in the hospital between the ones she had and the ones for which she was being monitored.
She had regular tests for neurotoxicity, which causes "slurred speech and issues with executive functioning and cognitive issues," she said.
"Every day I was asked all kind of questions," Sheppard said. "I had to write my name every day, do basic reading comprehensive tests, all kinds of things. That was the entire month of June, gone by in a blur."
Eventually, the Leukemia & Lymphoma Society paid to allow Sheppard to live in a hotel across the street from the hospital with a full-time caregiver. The room had a little kitchen where they could make meals and still visit the hospital for testing every day.
Friends and family came to stay with her, which felt more homelike after her long months in the hospital.
Once back at home, Sheppard was still seeing doctors at least twice a week, she remembered, noting that it takes a long time to try to rebuild energy levels. "I didn't want to grow roots in bed, but I was exhausted all the time," she said.
The road back to wellness
Sheppard's goal was to get back to work, which gave her doctors pause. She also has been working on building muscle and strength so that she can return to aerial arts with the New England Center for Circus Arts.
"My hospital caregivers keep laughing at me," she said. "Many patients don't ever want to return to work. I kept arguing with them about when I could."
For Sheppard, who is now working two days a week as Re's Haircraft, work is essential to recovery.
"I'm a people person. I love my clients. I love my community," she said. "It's been wonderful coming back into work."
Re's Haircraft shares space with Creations by Krystie, which opened on Dec. 1 at 6 Elliot St., the longtime headquarters of Salon Jacque.
She and proprietor Krystie Curtiss worked together for almost 15 years at Salon Jacque, which closed in May 2024. Curtiss had been serving her clientele from a salon on Flat Street before moving back to the familiar storefront.
"Re has shown incredible strength and resilience while focusing on her health, and now she's ready to bring her talent and passion for hair back to our space," Curtiss wrote on the Creations by Krystie Facebook page on Nov. 26, 2024. "Her skill, creativity, and warmth have been dearly missed, and it's an absolute joy to have her by my side once again."
"It's a great space," Sheppard said. "It's exciting to be back."
Sheppard takes nothing for granted and, while enthusiastic about returning to her vocation, she continues working hard on her self-care and recovery.
"I'm starting to climb up the mountain again," she said. "My body is different. It's a kind of learning process."
But she's grateful and describes the cadre of people who are recovering from devastating illness as "a very exclusive club that I never intended to join."
"I'm lucky to be a member," she said. "I'm so thankful for all the people who have supported me on this journey."
Those who wish to schedule a hair appointment with Sheppard can reach her at 802-490-4760. She is available on Thursdays from 10 a.m. to 4 p.m. and on Fridays from 10 a.m. to 2 p.m.
This News item by Fran Lynggaard Hansen was written for The Commons.