“In Our Own Words”: Cancer patients tell their stories

For Christine Shadle, Ph.D., the writers group for patients at Smilow Cancer Hospital at Yale New Haven Health was a godsend.

She seized the opportunity to write frankly about her breast cancer and share her writing with fellow patients, without softening the “gory and disgusting” realities of her disease. “It’s really lonely to have a severe illness,” said Shadle, who is now in remission. “This is a way of telling my story, and it ends up being a way to find ourselves.”

Shadle and nine other patients shared their work in a booklet called “In Our Own Words,” published thanks in part to a grant from the annual Closer to Free fundraising campaign. On a Thursday evening in October, four patients and three guest readers read essays from the booklet before an audience of physicians, caregivers, and family members in the Park Building. The authors and guest readers, including Yale New Haven Health CEO Marna P. Borgstrom, M.P.H. ’79, read from the works. By turns ironic, inspiring, sobering, and funny, the essays relate key moments in diagnosis and treatment, as well as observations and realizations made along the way. “I feel honored to have been part of this program and have a chance to look into some of your personal moments,” said Dana Shaffer, Smilow’s art expression coordinator.

In her essay, Shadle, a research scientist at the Haskins Laboratories in New Haven, noted that oncotype scores that determine whether she’ll need chemotherapy and National Institutes of Health scores for grant applications share one characteristic—a low score is better. And in both cases a score over 31 is bad. “I saw my oncologist this morning, and she told me my score,” Shadle wrote. “It’s 34. A new era is starting.”

Judith Drew Mauzaka wrote of her yearning to take a vacation and “swim with sea turtles in the warm blue waters of the Caribbean” despite the risks involved. Mauzaka, who has since died, indeed made the trip.

Kathleen Miles Schumacher, a breast cancer survivor, described an elevator ride with a hospital employee who pretended he was an elevator operator. “Sixth floor! Menswear!” he called out. “Fifth floor! Cocktail lounge! Fourth floor! Baked goods!” That ride, Schumacher wrote, turned a car full of strangers into a temporary community, and the ride into “an interactive comedy club for a few brief minutes.” As she read her essay, Donald Macmillan, the hospital’s flight services coordinator who provides helicopter transportation for patients and the employee in her story, stood at her side barking out the floor announcements.

The writers’ program was founded in 2013 thanks to retired New York Times editor and reporter Charlotte Evans, Shaffer said. During her journalism career, Evans said, she felt her work was important to readers, but at a distance from them. In retirement, however, she sought a closer connection. “I thought it would be rewarding to try to help people one on one and get to know them as people,” she said.

The group meets every other week and typically includes four to six patients, Shaffer said. About 30 patients have taken part since its inception, she said.

The program is one of many run by Integrative Medicine at Smilow Cancer Hospital, including art, yoga, and meditation, to address cancer patients’ psychological and emotional needs. “These are all things that help you step back and put you more in tune with yourself,” she said.

The booklet is just the beginning, Shaffer said. She is already choosing essays for a second collection.