On April 29, 2016, I was getting ready for a workout. I felt good and, at 68, was ready to roll. Little did I know that in the next moment my world would go dark. My dermatologist called and advised me that the biopsy on my “it’s nothing to worry about” mole was melanoma. Later that day, I read the pathologist’s report that suggested my melanoma had likely metastasized. It had.
The ensuing days were full of anxiety and panic. Between moments of gripping fear, I needed to connect with the University of California San Francisco (UCSF) to schedule a PET scan, arrange an appointment with an oncologist, and then an oncology surgeon. I continued to twist myself into a knot and was wide-eyed with anticipation when I met my UCSF oncologist, Dr. Adil Daud. I thought, “Here comes the death sentence.” Not even close.
Casually dressed and offering a warm smile, Dr. Daud offered the very first ray of light I had experienced in two weeks. “Bob,” he said, “I want you to know that this is not your father’s or your grandfather’s world of treatment for melanoma. There is a revolution underway in the ways we can treat melanoma. Current research has yielded a new generation of treatments known as immunotherapies. These drugs have significantly improved overall survival and recurrence free life after diagnosis. They are 'off the charts better' compared to what we could offer just a few short years ago.” I was nearly in tears for all the reasons you can imagine.
Dr. Daud then invited me to participate in a double blind, Phase III clinical trial testing whether an immunotherapy drug called Keytruda (vs. placebo) would prevent recurrence in high-risk stage III melanoma patients, such as me. All my lymph nodes were removed, and I soon entered the trial. I knew very little, but I placed faith in Dr. Daud and UCSF. The trial included CT scans every three months (then six months, now yearly), as well as lots of blood draws and clinical exams. To date, I have not had a recurrence, but I do not know, nor will I likely ever know, whether I received Keytruda or placebo.
For the first few months of the trial, I thought the continuing cycle of office visits, infusions, scans, blood draws, and endless worry was the worst thing that ever happened to me. I was seriously depressed and spent hours moping, lost in my own anxiety. My wife, family, and friends did all they could do boost my spirits. But I remained very low.
Today, six years later, I believe my diagnosis and participation in the clinical trial was one of the most positive and transformational aspects of my life. While I would never wish a melanoma diagnosis on anyone, it was for me – on balance – a blessing. Why? My diagnosis brought my mortality into sharp focus unlike anything else I ever experienced. It triggered a hard re-set of my life – specifically, how was I spending my time, with whom, and to what end?
I learned to face my fears head-on. I am not yet where I want to be, but every year I take on a challenge that my pre-melanoma self would never have considered. I summited a 14er—a 14,000 foot mountain peak—in Colorado. I hiked down to the bottom of the Grand Canyon from the south and climbed back out on the north. Twice, I completed 100-mile bike rides for cancer research (Obliteride, Fred Hutch, Seattle). This summer, I plan to complete 365 miles on the Empire State Trail in New York, and do another Obliteride. I practice facing my fears, which I learned from my melanoma experience. So grateful.
Give of myself to others. I did some of this prior to melanoma, but not with the commitment and meaning I do now. I serve as a hospice volunteer in the state prison near my home, bringing conversation, listening, and above all, presence to prisoners who are dying. While doing this work I discovered that these men were teaching and comforting me, as we talk about the need for healing and wholeness in our lives. I learned that we are all one. For me, this has been a new and enriching way to see other people – all other people.
Support my melanoma brothers and sisters. I serve as a peer support person for newly diagnosed melanoma patients through UCSF and AIM at Melanoma. This work is all about listening, sharing my journey, and gently comforting and reassuring others who are in the early, dark, and often overwhelming stages post-diagnosis. We teach each other and learn from one another. Many of my peer support people are now dear friends.
Give back to the melanoma researchers and clinicians. December 2021 was my first experience serving as a Consumer Reviewer for the Melanoma Research Program Peer Review. It was an opportunity to bring my journey to bear as a “consumer” of clinical research, and also the journeys of other “consumers” I have met along the way. Research, I believe, is the foundation for learning and the treatments and interventions that save lives. It is the lynchpin for progress and, ultimately, healing. Contributing my experiences and perspectives to the panel discussions was empowering, as was listening to the views of the researchers, clinicians, and other consumers. It was amazing to be in the same room with people who all share the same goals – to cure cancer faster and once and for all! We can do this, friends.
Bob and his wife Kathy as they train for their 14er hike in Colorado. The two met in Leadville, Colorado in 1993 and maintain a love for the state.
Last updated Thursday, May 26, 2022