Type of Sarcoma: Mesenchymal Chondrosarcoma
In February 2016, Ken Selden was diagnosed with mesenchymal chondrosarcoma on his spine. He endured 9 months of chemotherapy, 5 weeks of radiation, and a major spinal surgery. Ken currently has no evidence of disease and credits his survivorship to the support of family, friends, and the excellent care at the Mayo Clinic and Huntsman Cancer Institute. He and his wife, Julieann, are passionate about helping sarcoma patients, fundraising, and enjoying life with their energetic 4-year-old son.
Ken selflessly recognizes the impact of his diagnosis on his entire family and views it as a family story, rather than his story alone. Julieann is volunteer editor for Rein in Sarcoma and writes a blog, contemplatingcancer.com, to provide support and understanding for cancer patients and families worldwide. They shared their thoughts about sarcoma at the 2017 Rein in Sarcoma Party in the Park.
Ken: “Eighteen months ago, my wife and I wanted to have another child. At the same time, we got the news that I had sarcoma. It became very clear that we weren’t going to have another baby, we were having a tumor instead. Because of sarcoma, we weren’t experiencing the excitement of an ultrasound. Instead, we faced the questions underlying every MRI. Questions like ‘will my wife be a widow before she even turns 30?’ Or ‘will my son grow up without his father?’ Sarcoma doesn’t just plague our bodies, but also our families. My wife is fighting this disease just hard as I am and it impacts her life just as deeply. Her passion and compassion know no bounds and is the glue that has kept our family together.”
Julieann: When my husband was diagnosed with sarcoma, I felt hopeless and helpless. I was sure that Ken was going to die, and there was nothing I could do.
Ken swore to never declare a 10 on the pain scale, because he always wanted the option to go higher. But after 24 hours in surgery to remove 4 ribs and vertebrae along with the tumor, the ICU monitors were blaring. His heart-rate was dangerously high, and he wasn’t breathing well. He could only utter one word. “Ten.” Surrounded by doctors and nurses, I watched the love of my life suffer pain that nearly killed him. And there was nothing I could do.
During chemotherapy, Ken was hospitalized for a fever of 107. He laid shivering on a cold hospital bed as bacteria attacked his colon. With tears in his eyes, he asked if this is what it feels like to die. I held his hand and cried with him, desperately wanting to relieve his sickness. But there was nothing I could do.
On Ken’s last day of chemo, we sat with a close friend and sarcoma patient. He celebrated the end of Ken’s treatment, despite knowing his situation was far worse. He dreaded leaving his wife and three young sons, but he died two weeks later. I was angry that our friend’s life was cut short. But there was nothing I could do.
In such dire circumstances, it feels like there is nothing we can do. We feel hopeless in the face of pain and sickness. We feel helpless when we cannot stop the suffering and death. But looking closer, I realize that sponge-bathing and bandaging my 29-year-old husband when he couldn’t walk really did make a difference. The long hospital nights of crying with Ken as chemo ravaged his body enabled him to push forward.
I CAN do something. I can comfort, lift, and strengthen by being a caregiver and friend. I can promote sarcoma awareness and raise funds for better treatments. The devastation of sarcoma should motivate us to donate time, effort, and money to the cause. Because there is always something we can do.”
Watch the video of Ken and Julieann's talk at the Party in the Park taken by Carolyn Selden.