We learned that Dr. Ken Youner died of kidney cancer yesterday. For those of us in the kidney cancer community, this is heartbreaking news, but what will be remembered is his life and all that he gave to others, especially those struggling with cancer. Dr. Ken, as he was known, was a retired gastroenterologist, and he applied his medical knowledge to helping untold numbers of cancer patients and survivors understand this disease, improve quality of life and find hope — this last, most of all.

Dena and I met Dr. Ken during one of his trips to Washington, D.C., in his role as medical adviser to the non-profit organization Action to Cure Kidney Cancer. We were meeting with a kidney cancer researcher at the National Institutes of Health in Bethesda. I was just coming off of my first round of IL-2 in the early spring of 2010. I looked terrible, the chemical burn from the treatment having left sores on my face. I was pale, drained and still having trouble walking. Ken sat with me in the lobby of the NIH and told me how good I looked, and he was sincere. He knew what IL-2 can do to a person. He told me how proud he was that I could join him and others in the group despite struggling with the side effects. He brought an optimism and aura of hope that was healing in its own way, and from that moment forward he became an inspiration to me to maintain my own optimism and fierce determination to battle cancer and not allow it to overtake my life.

Ken’s personal story is a remarkable one. Diagnosed with kidney cancer in 2003, he lived a full — happy and determined, I suspect he might say — life even with Stage IV cancer. He motivated others through his example of practicing the advice he offered, of maintaining a hopeful perspective and a healthy physical regimen, by regularly participating in and even organizing cycling events to raise money for cancer. He founded the Cecile and Ken Youner Fund for Cancer Research after his wife, Cecile, died of breast cancer. He spoke at conferences and engaged online cancer communities through ACOR, a listserv dedicated to cancer patients and survivors, and through social media and blogging. In October of 2010, while training for one of the cycling rides to raise money for his cancer fund, he suffered another severe setback when he flipped over his bike and hit the ground headfirst, resulting in spinal damage that would paralyze him. During his recovery and comeback — and, yes, again he showed his fierce will to live — he was forced off of Sutent, his cancer treatment.

Ken’s response? Let me use his own words:

“I now will try to return to some of my work to help all of those with kidney cancer out there. If at the same time I can help those with disabilities understand that they can do work even with this those disabilities I will even be happier … I am doing my best to continue to fight on and do what I can with the time I have left to help those like me in the kidney cancer community and now in the New World of disability. I hope I can continue working on the a core list and help those patients and continue to answer questions about kidney cancer. I will continue in the fight and I look forward to communicating further with all of my great friends out there in the world fighting kidney cancer.”

I stumbled upon a video that Ken made, a touchingly personal video reflecting on his life and offering advice to his children and grandchildren. It is clear how much he loved them, and at one point he notes proudly that he “managed to weave a wonderful family together.” I don’t think it’s appropriate for me to share that video here, due to its personal nature. However, I would like to share one reflection he offered to his children but, in a way, to all of us. Looking into the camera, he noted that everybody is responsible for his or her own life. He apologized for it sounding “trite” but emphasized that if you want something badly enough, you can achieve it. It might not be easy, but determination would see you through. “The key to success,” he said, “was persistence.” Nobody has proven that piece of advice better than Ken himself.

It is with very fond memories that we say goodbye, Dr. Ken. And thank you.

Ken’s family has asked that donations in Ken’s honor and memory be made to Action to Kidney Cancer, where he served on the board.

This post was crossposted from The Kidney Cancer Chronicles.