Tonsil cancer diagnosis leaves patient with powerful voice to help others
Married for 31 years with two daughters, Kolosky worked at a call center in Naperville where she spent most of her time talking on the phone. When Kolosky's voice turned raspy and softer in April 2016, she assumed it was because of her profession. But by October, Kolosky was having difficulty swallowing and started losing her hair.
“I knew something was wrong, so I went to my primary care doctor who placed a scope down my throat,” explains Kolosky. “His eyes started getting really big and he told me that I needed a biopsy.”
Dr. Sandeep Samant, chief of head and neck surgery at Northwestern Memorial Hospital, diagnosed Kolosky with tonsil cancer, caused by the human papillomavirus (HPV). Surgery would have involved removing Kolosky's voice box; so instead, her doctors recommended simultaneous radiation and chemotherapy.
“Treatment made me so nauseous,” says Kolosky. “Some days I couldn't eat or I would throw up, which caused my throat to hurt. I ended up losing 40 pounds and needed a feeding tube.”
After finishing seven weeks of treatment, Kolosky returned home to Wheaton where she started her road to recovery. Cancer treatment had caused swelling around Kolosky's neck — known as lymphedema — and impacted her ability to swallow. Kolosky began rehabilitation with Jamie Olp Stoker, a lead occupational therapist at Northwestern Medicine Cancer Center Warrenville, and their conversations sparked an idea.
“I felt like I was the only person recovering from this horrible disease, but Jamie assured me I wasn't alone,” Kolosky says.
“Head and neck cancers can involve intense, often debilitation treatment with side effects and a recovery process that can take a very long time,” Stoker said. “Due to this, people who have not been through this type of treatment can't truly understand or be able to help in a way that people can who have this shared experience.”
In October 2018, Kolosky and Stoker held their first support group for head, neck and esophageal cancer patients through LivingWell Cancer Resource Center at Northwestern Medicine Cancer Center Warrenville. The quarterly meetings are held on the first Monday of the month, and aim to have an educational topic regarding an aspect of head and neck cancer, along with a guest presenter. There's time to share feelings, experiences and advice for those who are currently going through treatment or recovery. Molly Trainor, an oncology social worker at the cancer center, and Mary Gustafson, a speech therapist at Northwestern Medicine Central DuPage Hospital, are also present to answer questions and help facilitate the group.
“The meetings have been inspiring and encouraging,” Kolosky says. “You hear from people who have already ‘walked the walk.' We talk about everything from dry mouth to what type of toothpaste works best.”
Even though cancer left Kolosky with a raspy voice and trouble eating certain foods, she's still able to use her voice in a powerful way. This time, to help other patients who are going through similar struggles.
“Head and neck cancer treatment and recovery can be isolating, but through this group, I truly feel like there's hope after cancer,” she said.
The next support group will meet from 6-7:30 p.m. Monday, July 1, in the Garden Conference Room at Northwestern Medicine Cancer Center Warrenville, located at 4405 Weaver Pkwy. To register, call (630) 262-1111.