Janet Trever calls it her beautiful burden. She wears it prominently on her face, and she faces it nearly every day. Trever has survived three unrelated bouts of cancer that have left her with facial disfigurements, emotional scars and an even stronger will to make the most of each moment.
She has learned to overcome cancer, without it overcoming her. She is reminded of her struggles and triumphs every morning when she puts on one of her 400 fashion eye patches that she personally makes to cover the right eye that was removed when she was only 5.
“I can’t leave behind my facial differences,” said Trever, 53, of Arlington Heights. “Everyone has aspects in life that make them different. Every individual has a beautiful burden. I want to teach others about reframing things into the positive. I can give an incredible experience of survival.”
She is sharing her stories of blessings and burdens with audiences around the suburbs and the country as head of the Yul Brynner Head and Neck Cancer Foundation, which is based at Holy Family Medical Center in Des Plaines.
“I have been surviving cancer since 1949,” she said. “I’m a wounded healer.”
The foundation, which bears the name of the famous actor from “The King and I” who died in 1985 of complications from cancer, was founded 15 years ago to fund research for those with head and neck cancer and train doctors in this area. Today the foundation’s focus has shifted toward advocacy and education to capitalize on Trever’s personal experiences and coping techniques, which range from creative writing to nutrition to humor.
“I want to do no harm and leave things better than when I found them,” she said. “That’s what being around is all about.”
The foundation is a clearinghouse of information, with Trever linking patients and professionals with support groups and resources. “I’m like a spider weaving its web out of its own essence,” she said. “I’m tapping into what I know and have experienced.”
When most young children were settling into their school classrooms for the first time, Trever was tackling her first bout of cancer in which her right eye was removed. Doctors predicted there was a 90 percent chance her cancer was terminal. But she survived the odds with the surgery and follow-up radiation that left her face radically altered.
She wore bandages and gauze squares taped over her eye. Then she attempted to wear an artificial eye, which she said made her appear cross-eyed. In college, Trever decided to make the permanent switch to her designer eye patches.
In the midst of a divorce in 1980 that ended her 14 years as a military wife, she was diagnosed with breast cancer and had a mastectomy. In 1982 she discovered a lump in her lower left jaw. The diagnosis of salivary gland cancer didn’t come until nine years later. She was given a choice of treatments and opted for a complicated six-hour surgical procedure in order to preserve the nerves in the left half of her face. After already losing her right eye 40 years earlier, she didn’t want to lose control of the other side of her face. Her decision meant that a portion of the cancer had to be left behind and treated with a grueling round of neutron radiation therapy.
It was at that time that her doctor, George A. Sisson Jr., told her something she will never forget. “I remember Dr. Sisson telling me that you have to get well because I need you,” she said. “Those were the magic words.”
She didn’t realize that Sisson’s plan was to have Trever take over as executive director of the Yul Brynner Head and Neck Foundation, which had been dormant for a few years.
“She’s a person who has been there and back again,” said Sisson, a leading otolaryngologist who is now retired and living in Oak Brook. “She motivates other people.”
Sisson started the foundation in 1982 in partnership with Brynner, who was diagnosed with a pre-cancerous condition of the larynx while starring in “The King and I” in Chicago. Brynner was referred to Sisson, who performed surgery one day and had the actor on the stage the following evening. A strong friendship developed between Sisson and Brynner, which led them to establish the foundation to fund fellowships for doctors and research on such areas as developing surgical cement to replace facial bones. Sisson says only about 40 percent of people with head and neck cancers survive more than five years.
When Brynner ended his five-year national stage production of “The King and I” in 1985 after performing the role more than 4,600 times, the plan was for him and Sisson to go on the road raising funds for a state-of-the-art center for head and neck cancer patients to come for diagnosis, treatment and support. That same year, Brynner died, but not before producing a 30-second public service announcement warning of the dangers of smoking. Current statistics show that 85 percent of head and neck cancer cases are caused by smoking, according to Trever.
Brynner’s death slowed down the activities of the foundation, which still maintains a national board of directors with the likes of Roger Ebert and Larry Gatlin. In 1994 Trever took on the volunteer position to lead the foundation, which the previous year had moved to an office at Holy Family Medical Center. At the time, the hospital was a satellite facility of Rush-Presbyterian-St. Luke’s Medical Center in Chicago, where Sisson had been on staff.
In the last 15 years, the foundation has raised about $300,000 for clinical research in the fields of head and neck oncology as well as plastic and reconstructive surgery.
“We turned out important research,” Sisson said. But he said funding challenges have dried the foundation’s hopes of a cancer center and further research. “Now we’ve turned to patient advocacy and education,” he said. “Janet is going in the right direction. People need to heal themselves by their own attitudes. She’s the right person to stand up before a crowd of people who have lost part of their face or voice.”
Trever is featured in a Colorado State University videotape titled “Surviving Cancer Across a Lifetime” that is shown at more than 250 medical schools and cancer centers across the country. She also writes articles and gives national presentations, including a recent talk at the National Coalition of Cancer Survivors.
Although she never met Brynner, Trever sees similarities between them. “Something pulled us down, but we did a thousand different things anyway,” she said. “I get inspired by what others have done and great things they have accomplished in a wounded condition.”
Trever, who holds advanced degrees in counseling, is writing a book about her cancer experiences, coping techniques, the foundation and other resources that people can contact for more information and help. The working title: “The Beautiful Burden.”
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For more information, contact the Yul Brynner Head and Neck Cancer Foundation at 847-297-1800, ext. 2857.
