Cancer counselor brings personal experience to patients
Inside her office at the Mercy Regional Cancer Center in Janesville, Distefano discussed with Schlueter about how his photography hobby helps take his mind off the esophageal cancer that has spread to his brain.
“She has helped me through a lot,” he said. “She should give herself a lot more credit than she does.”
While Distefano felt her calling as a young girl to help others, her perspective in working with cancer patients comes from personal experience. Distefano was diagnosed last May with Stage IV non-Hodgkin’s lymphoma, just two days after her daughter Dena’s wedding.
The clinical social worker realized she had to make some significant choices.
“I had to follow my own words,” she said.
She’s always looked at the glass as half-full, and she took that approach into chemotherapy and antibody treatments through summer.
“While I was having my treatment, I had this epiphany,” she said. “I just went, ‘Wow, I have cancer because I have to help other cancer patients. It was just clear.”
As she talked to other patients and learned more through her own experiences, she realized the importance of patients’ psychosocial health needs. She worked with Mercy to create her new position, a clinical social worker in oncology, which she started in October.
A report brief in the October issue of the Institute of Medicine’s journal confirmed her beliefs that cancer care is more than just medicine and treatment.
“A growing body of scientific evidence demonstrates that the psychological and social problems created or exacerbated by cancer can be effectively addressed by a number of services and interventions,” the report states.
“Patients, physicians and other cancer care providers tell us that attention to patients’ psychosocial health needs is the exception rather than the rule in cancer care today,” the report also stated.
“It’s really the wave of the future in hospitals and clinics recognizing that the emotional/psychosocial part of cancer is invaluable to the full survival and healing,” Distefano said. “I know that just from talking to patients.”
At the cancer center, Distefano meets with new cancer patients and family members, explains social work services and chemotherapy treatment, and counsels the patient during and after their treatment.
“I never tell anyone I know how they feel because that makes cancer patients pretty angry, because you don’t,” she said. “But I can share that I’ve walked the walk of cancer.”
Her own treatment, for example, brought her understanding of what it means when someone tells her, “I’m really depleted”; it’s not just being tired from having a long day, she said.
Distefano also knows what it feels like to experience loss. Her first husband, Rich Distefano, died 18 years ago of a stroke at age 46.
“That was a real loss, and yet what I shared with patients was that life is for the living, and your heart’s big enough to store all those wonderful memories and add future experiences,” she said.
Twelve years ago, she married Bob Krohn, and the support from her family and friends has helped her through her treatments. Now in remission, Distefano will have two more years of treatment.
“I just look at it … as how lucky I am that I can have an understanding of what they’re going through, and that I can help relate those experiences,” she said.
She’s never personalized her own cancer, because cancer’s not contagious, she said. But she can relate to a patient’s feelings, such as anger. She recalls wanting to smack a person who told her she was halfway through treatment.
“Halfway was great, but the next half was not easy,” she said.
At the center, she wears both patient and staff member hats.
“Everybody has an interest and a deep abiding love and respect for cancer patients,” she said of the center’s staff. “It’s very different than any other place I’ve worked.”
On the wall behind her desk hangs a large photo of herself in a pink sweater and scarf on her head, along with the poem “She Who Survives.” Her husband presented the frame during a party when she finished chemo, and messages of hope and happiness signed by friends fill the artwork’s border.
The frame provides inspiration for her patients, she said.
“I don’t think I do anything special,” she said. “I think it’s a service I’m providing, and because I have cancer, then that caring and connectiveness to my patients is on a different level than if I didn’t have cancer.”