Kathy Koontz, 52, of Dublin, has been to the bottom of the abyss and back.
She hit bottom with the jolt of a February 2013 diagnosis of primary amyloidosis (known as AL), an incurable condition in which plasma cells produce an abnormal protein that accumulates in organs, leading to a decline in function and, in many cases, organ failure. It is closely related to a blood cancer called multiple myeloma and is often treated with the same protocols.
She completed her comeback 18 months later when
she rode the full 180-mile, two-day trek of Pelotonia 14—her treatment finished, her illness in remission, her spirits soaring.
To Koontz, crossing the finish line on the first day’s 100- mile ride side-by-side with her husband and her oncologist’s nurse practitioner marked the moment she stopped being a patient, having proven to everyone that she had overcome the effects of her disease and treatment.
“Riding the 180 miles in Pelotonia 14 was the most inspiring and overwhelming experience of my life,” she says. “Seeing all the people lining the streets and cheering us on, looking around at my fellow riders and thinking, ‘They’re out here to help me and others like me’—it filled me with gratitude and hope.”
Especially after all she’s been through, and despite the realization that her illness will likely recur.
Koontz says her diagnosis at Ohio State’s Wexner Medical Center came as a shock. “I was always healthy and strong, riding my bike 50 miles for fun, participating in workout classes in which I kept up with people 15 years younger than I,” she says.
Her online searches frighteningly revealed that average survival for 80 percent of patients with AL (amyloid light chain) amyloidosis was just four years. However, with advances in research and the approval of novel treatments, her chances now of being alive in five years are 66-80 percent.
The numbers led to troubling questions. “My daughter was a freshman in high school; would I see her graduate high school or college? My other daughter was married four months before; would I be around for any grandchildren? It was a really scary time,” Koontz recalls.
She considered going to other centers renowned for treating amyloidosis but chose Ohio State’s Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute because she “knew I could get the same level of care at The James. It’s such a fabulous combination of clinical competency with compassion and comfort. I had total trust in the team that was taking care of me.”
Just under two weeks after her diagnosis, she started one round of chemotherapy, and plans were made for her to have high-dose chemotherapy and an autologous stem cell transplant soon after she returned from a family ski trip to Colorado. She was weak, in pain and carrying 30 pounds of fluid in her abdomen after her initial treatment, but she skied with her family every day of the trip, fearing it might be her last vacation with them.
That spring she spent 24 days at The James for her stem cell transplant and nine days at Dodd Hall Rehabilitation Services at Ohio State so she could learn to walk short distances and climb a few stairs after gaining 60 pounds of fluid in the hospital.
When she returned home in May, Koontz, with the help of her husband, began the struggle of rebuilding her stamina and adjusting to life with amyloidosis. That summer, she was elated to learn that the stem cell transplant had been successful and she was in remission. Steadily, she returned to her exercise classes, started cycling again and set a goal of riding in Pelotonia.
“Pelotonia 14 was my first ride in that event,” she says. “I was a cyclist before I got sick and had done other long-distance rides. I had considered riding in Pelotonia before, but the fundraising commitment intimidated me.
“But once I got out of the hospital, I thought riding in Pelotonia would be an exclamation point on my recovery.”
Koontz credits her revitalized life to the grace of God and to the experts at The James.
“During my hospital stay, Dr. William Blum and my primary nurse, Bonnie Everett, were phenomenal,” she says. “My oncologist, Dr. Yvonne Efebera, and her nurse practitioner, Tammy Lamb, manage my care, and we are so close. I can’t think of two people I’d rather have by my side as we fight this disease long term.”
Because of the high likelihood of relapse, Koontz sees Efebera every three months to make sure her disease remains in remission. “If everything is normal at my next check-up, which will be two years post-transplant, my follow-ups will be every four months,” Koontz says.
Meanwhile, she is preparing to ride 180 miles in Pelotonia 15 with RideMmore, a Team Buckeye peloton (riding group). “My life as a survivor is full and wonderful,” Koontz says. “I’m busy enjoying the health that The James helped restore.”
She admits that she sometimes becomes anxious over the high relapse rates for her disease. “But then I think about the thousands of people riding in Pelotonia and the hundreds of researchers at The James, and I don’t worry. I think, ‘We got this!’”
A sentiment shared by scores of cyclists.