Couple find support groups offer perspective, empathy to caregivers and patients.
Featured photo by Sean Cook
When Mary Sue Schottenfels’ husband Ken Knoppow was diagnosed with prostate cancer in 2010, it was not only difficult for him, but she also found herself facing emotions of fright and isolation.
“I think the biggest challenge is balancing a full-time job and giving him support,” she said. “It’s the stress of not knowing what the future holds.”
Schottenfels, 69, works as executive director of CLEARCorps, a Detroit-based nonprofit organization that promotes healthy home environments to Detroit residents. She also took on the task of keeping track of her husband’s medications and doctors’ appointments, as well as escorting him to almost every appointment. Knoppow, 70, is being treated by a team of oncologists at the Barbara Ann Karmanos Cancer Institute.
“It’s been really good in terms of his openness to my help,” she said of Ken, a retired criminal law attorney.
Doctors discovered Knoppow’s cancer “fairly early,” according to the couple, and he underwent a prostatectomy and radiation, which eliminated the cancer. But then the prostate cancer returned in 2016 and metastasized to Knoppow’s bones. He has received immunotherapy treatments and targeted therapies and is now receiving chemotherapy.
Knoppow is also being screened by his primary oncologist Ulka Vaishampayan, M.D., director of the Phase I Clinical Trials Program at Karmanos, to determine if he is eligible to participate in a clinical trial at Karmanos. His situation is complicated because he has a BRCA2 gene mutation, which is common among Ashkenazi Jews and increases an individual’s likelihood of being diagnosed with a variety of cancers including breast, ovarian, pancreatic and prostate cancers, as well as melanoma.
Both Schottenfels and Knoppow, who live in West Bloomfield, take part in Karmanos’ support groups at the Weisberg Cancer Treatment Center in Farmington Hills. Schottenfels said her participation in the Caregivers Support Group provides her a lifeline in handling both the practical and emotional challenges of caring for Ken.
“We focus on treatment options, how to communicate with your doctor, longevity questions and fears,” Schottenfels said. “We talk about what a specific person is going through. We laugh a lot, too. Even situations that are horrible can be funny.”
Knoppow attends Karmanos’ Men’s Support Group and says the members discuss their respective diseases.
“It puts things in perspective, and it makes you feel less alone,” he said. “Everybody should really try a support group. You see people in similar situations.”
The couple say it is most helpful when a fellow support group member is in the same place as they are as it relates to the disease. Talking to that person really helps when it comes to making treatment decisions.
“The Caregivers Support Group is invaluable,” Schottenfels said. “We feel pretty bonded with each other. To me, it’s like you walk into the room and it’s a sigh of relief.”
Kathleen Hardy, LMSW, an oncology social worker at the Weisberg center, said the ripples of a cancer diagnosis extend to family members who can experience higher-than-normal stress levels. That’s why social and emotional support is so important for those who care for individuals diagnosed with cancer.
“Spouses may be asked to provide emotional support, to help with decision making, to provide medical care, to manage financial stressors and to live with a certain amount of fear and uncertainty,” she said. “In a family (support) group, you know you are not alone. Other group members understand the changing roles and increasing demands and are there for your support.”
Karmanos’ various support groups, those located in Farmington and at the main Detroit location, are free and open to the public, even if an individual is not being treated at Karmanos. Caregivers and cancer patients also can take part in Karmanos’ Healing Arts Program in Farmington Hills, which is free and open to the community. The program includes music and art therapy, massage, Reiki, Tai Chi classes and other complementary therapies.
Both Schottenfels and Knoppow remain active as a way to live each day with the disease. Knoppow is involved with Meals on Wheels, teaches chess to school-age children and organizes a monthly folk music concert series at the West Bloomfield Library. Besides her day job, Schottenfels enjoys spending time with family, and both are involved with politics. They also attend Temple Kol Ami in West Bloomfield and travel frequently.
“With Karmanos’ support and Ken’s strength, we are hoping and planning for a great many years together,” she said.
Schottenfels advises other caregivers to take care of themselves as they provide support for their ailing loved one.
“The No. 1 thing for me is to take one day at a time,” she said. “Seek and accept support. Be open to new activities and stress relievers. We do appreciate the wrap-around services that Karmanos provides.”
Karmanos’ Caregivers Support Group is supported by the Community Foundation for Southeast Michigan and the Ralph C. Wilson Jr. Legacy Funds. To learn more, contact Kathleen Hardy at (248) 538-4712 or email email@example.com.