I’m the 59-year-old dad of two amazing, grown sons with whom I love spending time. I am an artisan custom furniture builder, a craft I’ve been honing for 40 years now. I am a former business owner, baseball coach, hobby mechanic, friend, son, and brother. Like everyone out there, my life has been marked by joys and sorrows, successes and failures, hopes and dreams. Like you, I have plans for the future; road trips, camping, fishing, retirement, being there for my sons, watching their lives unfold. Not an unusual description, right?
In May of 2016, it all changed. I found myself sitting in a chair opposite my urologist as she explained the results of my recent prostate biopsy. “Steve, I wish I had different news for you, but I don’t. It’s bad. Really bad. You have a very aggressive, advanced prostate cancer. This is a game-changer.”
As I tried to digest what she was telling me, she patiently explained that this kind of cancer is scored on what’s called the Gleason grading system, based on the pathology. Essentially, the lower the number – from 1 to 10 – the better. Mine is a 9. Prognosis? Best case survival is likely only 5 years, worst case, 2 years. My mind reeled! I thought prostate cancer was always treatable, never fatal, I was wrong.
As I drove home, my mind struggled to grasp at fragmented thoughts; my boys, the things I’ve wanted to do and won’t have time to, and the harsh realization that I had wasted precious time by not confessing my symptoms to my doctor earlier. By that time, I had been having escalating symptoms for at least eight months. And in the back of my mind, it was prostate cancer that I feared, and in my fear, I tucked my head comfortably in the sand and let time pass, possibly time that would have spared my life.
Next came surgery, hormone-suppressing therapy and the constant cycle of appointments, tests, scans and the education that goes with it. I feel the disease changing my energy level, and I carefully plan my time and think about how I might be able to help others to learn from my mistake. My denial. My fear and embarrassment. Those were the driving forces behind my delayed diagnosis.
What would I do differently, given what I know now? (And this applies to every disease!)
- I would be brutally honest with my doctor about every symptom or suspicion of symptoms. Having to go to the bathroom more frequently, day OR night and painful ejaculations are the ones that would have made the difference for me. I was embarrassed and I was afraid of what would be found, that I would never be able to have sex again, or that I would be incontinent. Waiting made the outcome worse than any of the fears that had kept me silent.
- I would have someone I trust at every appointment, biopsy, surgery, and follow up. I didn’t want to impose, thought I should be able to handle things on my own. There is too much to absorb to do it alone. That person can help you get clear answers, take notes and explain things that you might not have gotten the first time around. They can clarify discharge instructions and medications, be another set of eyes in the hospital and they can be there in silence when you need it. All of that matters.
Be honest! Be bold! It is selfish not to. I have stolen my sons’ father by keeping my symptoms to myself.
So, now I have a new purpose. If I can save one life while I still have mine, this journey will not be in vain. In August, my dog, Janie, and I embarked on a two-month road trip to spread the word. We’re traveling to many places in the U.S. that have long been on my list, and, with a prostate cancer ribbon on my truck and my fishing kayak on top, I’ll be speaking to people along the way – individuals and groups – and documenting it on my blog. Feel free to follow along! Hopefully someone who is hiding from their symptoms will become bold, be treated, and be there to watch their kids’ lives unfold.