It’s the most wonderful place you don’t want to be. We’ve met people there we’ll be friends with for the rest of our lives. It’s our home away from home.
Ken Wood is looking forward to the day he can return to the American Cancer Society’s Minneapolis Hope Lodge community as a volunteer instead of a guest. “I love that place; it’s like therapy in a way,” said Ken. “It’s great to meet other people with cancer, get to know them, and reach out when it looks like somebody needs somebody to talk to. I want to go back and cook meals for them.”
Ken and his wife Kay have been frequent visitors to the Hope Lodge facility this past year while he’s been undergoing chemotherapy, radiation, and surgery for rectal cancer. They live almost 3 hours away from the hospital and found themselves in a financial bind as they struggled to pay the out-of-pocket maximum for their medical insurance. The Hope Lodge program offers cancer patients and their caregivers a free place to stay when their best treatment option is away from home. The facility is just 15 minutes away from the hospital where Ken was treated.
“It’s the most wonderful place you don’t want to be,” said Kay. “We’ve met people there we’ll be friends with for the rest of our lives. It’s our home away from home.”
Ken was 52 years old in February 2018 when he began having symptoms he couldn’t ignore. They included stomach pain, frequent bowel movements, and blood in his stool. He underwent tests including an endoscopy, a colonoscopy, and a CT scan. He was diagnosed with stage 3 rectal cancer. He had a tumor the size of a clementine orange at the end of his rectum, and the cancer had spread to some lymph nodes.
“No one can prepare you to hear that someone you love has cancer,” said Kay. “I walked around in a fog and cried for 2 weeks straight.”
At first, getting care was a series of frustrations and red tape for the Woods. After several delays, Ken finally underwent all-day testing at University of Minnesota Medical Center. But when he returned for his follow-up visit, he learned his colorectal surgeon was not in his medical insurance network. He found a surgeon in his network at Abbott Northwestern Hospital in Minneapolis, but getting his records transferred was complicated. It had been 2 months since Ken’s diagnosis, and he and Kay were worried the cancer might be getting worse.
That’s when the hospital’s cancer care coordinator stepped in. Cancer care coordinators are sometimes called navigators and are usually registered nurses who work with patients and their doctors to manage paperwork, schedule appointments, and provide education and support to survivors and caregivers. Kay says the coordinator was crucial in getting Ken’s treatment plan started.
Ken’s treatment plan included 8 cycles of chemotherapy infusions, 28 radiation treatments, and surgery to remove the tumor in his rectum. Ken, a carpenter, worked through much of his treatment. His employer gave him time off when he needed it and even assigned him to work in Minneapolis, near the Hope Lodge facility, when jobs there became available.
Although Ken had medical insurance, he also had a large out-of-pocket maximum to pay. He and Kay worried about how they were going to afford it and asked friends and family to pray for them. Their friends did more than that. They organized a benefit that included a luncheon and silent auction and raised $12,000 to help with Ken’s medical costs. “I was amazed,” said Kay. “We have realized how important our friends are.”
By the time Ken rang the bell at Abbott Northwestern Hospital to mark the completion of his last radiation treatment, during which he also had a chemotherapy pump, his tumor was no longer detectable. At his last follow-up visit, scans were unable to detect any sign of his cancer. He’s now scheduled for surgery to reverse his ileostomy, an opening the doctor made during his cancer surgery to allow waste to pass while his rectum was healing.
Once again, the Woods plan to stay at the Hope Lodge near the hospital.
The American Cancer Society recommends regular colorectal cancer screening for people at average risk starting at age 45. People at higher risk – because of family history or certain health conditions – should talk with their doctor about beginning regular screening at a younger age.
Ken says he was offered screening a couple of years before his symptoms began, but he didn’t have it done. He says he thought he wasn’t at risk because he didn’t have a family history of colorectal cancer. Kay says she wasn’t excited about being screened either, but she did it anyway. She had a colonoscopy, and her doctor found and removed 3 polyps, which can sometimes turn in to cancer.
Ken and Kay now both advise others to get up-to-date on their cancer screenings. “Now I realize the importance of screening,” said Kay.
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