Read Time: 4 minutes
Updated August 2023
Originally Published July 2017
In the short time between Ken Selden’s cancer diagnosis and the end of his treatment, he and his wife, Julieann, went through a lifetime’s worth of grief, fear, pain, hope, and joy. In return, they’ve earned a lifetime’s worth of wisdom and now live a more purposeful life.
"We’ve found that the happy and good moments are more precious—and therefore more joyful," says Ken.
"We’re growing in ways we never would have without cancer," Julieann adds. "Our days revolve around finding joy and helping others."
These life lessons came at a difficult price. In early 2016, Ken learned the pain he had been experiencing in his back was due to mesenchymal chondrosarcoma, an extremely rare cancer that affects cartilage. According to the National Organization for Rare Disorders, fewer than 800 cases of the disease have ever been recorded. The diagnosis left the couple feeling "very much alone," says Julieann. "There was no one to connect with."
While living in Salt Lake City, Ken started on chemotherapy. He faced a daunting surgery to remove a tumor growing right along his spinal column. Because of the surgery’s complexity, Ken and Julieann sought a second opinion at the Mayo Clinic in Ken’s home state of Minnesota. They chose to have the surgery there.
Ken recalls the surgeons explaining how delicate the procedure would be. "They told me, ‘We have to angle it just right so we don’t nick your spinal column.’ I was terrified I would lose the use of my legs."
The procedure took several surgeons and a total of 24 hours over three days. It was a success—the surgeons were able to remove all of the tumor without damaging Ken’s spine. But the intense surgery required several months of rehabilitation in which Ken learned to walk again. At the same time, he endured more chemotherapy and 25 cycles of radiation. Then the couple returned to Utah, where Ken received four more months of chemotherapy at Huntsman Cancer Institute.
"Ken has endured more pain and sickness than I ever thought possible," Julieann says.
Today Ken has no evidence of cancer. Although both he and Julieann are aware of the chance of recurrence, they are moving forward and adjusting to their new normal. And they seem to have found their calling in life—helping others.
Throughout Ken’s treatment, the couple felt the need to talk with people who understood. They searched for and connected with other young adult sarcoma patients and caregivers. Julieann found a blogger with mesenchymal chondrosarcoma, a woman she now considers one of her best friends.
"I've made a lot of connections with people in various parts of the world," says Julieann. "We also made some forever friends at Huntsman Cancer Institute. Those interactions have been invaluable. I have been lifted from many of my lowest moments by others who truly get it."
"There were many times we found ourselves in situations that were hard for friends and neighbors to relate to," Ken adds. "From trying to potty-train our son while spending most of our time in the hospital to fears of Julieann becoming a widow. It made a huge difference to talk to others who have been there before."
The power of these friendships made such an impression on Julieann and Ken that they are giving back.
"We hope others know how much we care and that there is a community of supporters ready to share their love and help in whatever way they can," says Ken, who currently works in healthcare analytics and uses his unique perspective to improve outcomes for other patients.
"Sharing our story and connecting with others has been the most rewarding part of our experience," says Julieann on her Facebook page, Contemplating Cancer. We want to use our experiences to help families with and without cancer across the world."
In addition to other families, Ken also shares his experiences with his two boys.
"When I consider other people in my situation aren’t afforded the same opportunity, I’m filled with sorrow. To think that I get the chance to raise my boys and experience all these different stages of their lives, gives me such joy.
Learn more about sarcoma.