In March of 2015 I was your basic healthy 53 year-old man, but I figured it was time for a check up. I made an appointment with my doctor and he ran all the usual tests. I left that appointment with a clean bill of health and a recommendation to exercise more. Four days later my doctor called me. You know it isn’t good if your doctor calls. I remember his words distinctly. “Your lab tests show monoclonal gammopathy, which may be early multiple myeloma.” None of those words meant a thing to me, until he said it was a type of cancer and he referred me to a hematologist. I couldn’t have been more stunned.
That phone call kicked off a series of increasingly frightening and confusing doctor’s visits. On my first visit I learned the increased proteins could be nothing, but I may have something called MGUS. The doctor explained the condition and softened the blow by explaining the small likelihood of MGUS becoming myeloma. A few tests later and another visit to the doctor I was told I may have smoldering myeloma, which meant closer monitoring. I had progressed from, “don’t worry about it” to “don’t worry about it now.” Then I was referred to a myeloma specialist.
Luckily I live near Seattle, Washington where some of the world’s best myeloma specialists practice. I made an appointment, my records were transferred and I waited an agonizing two weeks.
My myeloma specialist was very direct about my test results and diagnosis. I definitely had multiple myeloma. There was nothing smoldering about it. He then asked, “Did your other doctor discuss your cytogenics with you?” The blank stare on my face told him I didn’t have a clue what cytogenics even meant. He explained I had an abnormality called “del17” which meant that I was a “high risk” patient.
Instead of watching and waiting, my previous treatment plan, he believed I’d begin treatment before the end of 2015. He also explained the science of myeloma in a way I hadn’t heard before. Not that relapse may happen, but that it most assuredly will happen. Then he spoke the words that seared into my brain. With my cytogenics my average survival was six to seven years. Did my doctor really just tell me I might not see my 60th birthday?
In less than a month I went from being totally healthy to learning I had a deadly and incurable form of cancer. The kicker is that I still didn’t feel sick at all.
Honestly, at this point I was a wreck. My wife was by my side for all the appointments and we shared the news with my adult children, but that was it. I couldn’t even tell my closest family and there was no way I was going to tell colleagues at work.
The secret knowledge ate at me, and I felt something I can only describe as shame. I was scared. Scared of dying and scared of living with the disease. I mourned the future I thought I’d lost. I felt jealous of people I thought would outlive me. While I did my best to stay productive at work, hiding my fear in the presence of colleagues, in the privacy of my office I often succumbed to paralyzing anxiety. I let thoughts of what might happen in the future deprive me of the present and separate me from the people I cared about.
I knew I couldn’t continue on this path. I sought help from my doctor and started seeing a counselor. My immediate family was my greatest support and I slowly started telling more family and close friends. When my colleagues learned about my condition they demonstrated great compassion. Instead of becoming “cancer guy” as I’d feared, I discovered a wealth of kindness and comfort. In fact, I found that my closest friends and family aided my recovery from fear and anxiety by refusing to treat me any differently than before.
When I was first diagnosed the Internet was a very scary source of information so I avoided it. My specialist pointed me to The Myeloma Beacon and I found an informative, reasoned and compassionate resource.
I’ll never forget the shock I felt leaving my specialist’s office after that first visit, but over time I’ve grown to have complete faith in him and the team. He is not locked into the statistics and he has great hope for my future. I learned about the amazing advances in myeloma treatment that I believe will keep me alive and kicking well beyond the previously stated expiration date.
With my willingness to share my experience with those close to me, and after learning more about the science of myeloma, I was able to accept the reality I’ve been handed. The fear hasn’t completely subsided, but the impact I let the fear have on my life has.
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Photo Credit: 2014 Mark Pouley.
This photograph of the North Fork of the Stillaguamish River was taken on March 21, 2014.
Less than 24 hours after I took the photo, a massive landslide destroyed a neighborhood a mile upstream from the location, killing 43 people in its path. The location was severely flooded, and the river flow was forever altered.
Almost exactly one year later, I received the phone call that set off my own personal landslide and forever altered my own personal path.