“Two- to 4-year life expectancy… ”
That’s how my second-opinion oncologist put it on our Zoom visit about a year ago. The reality of that range washed over me like a tidal wave. I’m a young guy, fit and clean and always healthy — until now.
But my PSA score was 560 on my blood test. Zero to four is normal. Dead by 68? Me? I tried to keep my composure since my sons were also on the call, but when I felt my emotional control slip away, I got up, walked into the bathroom, and burst into tears.
It wasn’t that I was afraid to die — I’ve always lived as though each day might be my last. But in this instance, I thought about never again seeing my two sons, my brother, or my partner Jennifer, and I crumbled.
After a few minutes, I regained my composure, and during the next few hours, I resolved how I’d respond to the oncologist’s words.
I hadn’t been to a doctor in a few years because of the pandemic and other things, so by the time I got my blood test, my immune system was pretty well decimated and the cancer had metastasized to all my bones. It wasn’t hopeless, but in football terms, my team was losing 35–0 halfway through the first quarter.
From this deficit is where I began to mount my comeback.
My plan was to find a better doctor, stay fit and positive and see or talk to those I cared about as often as I could.
The first doctor thought my symptoms were caused by allergies so we parted company. When she saw the high PSA score (560 is an astronomically high number), her office stopped trying to make another appointment because she knew I was pretty far gone for her kind of medicine.
Finding the right medical care lead and their staff in my stage 4 condition is as hard as finding a consistently good cup of coffee. The right blend of clarity and knowledge and the fine grind of availability, flexibility, and responsiveness is vital when choosing who will be tasked daily with saving your life.
Five months ago, I felt terrible and suggested to my doctor that I go in for a blood test for PSA and to check my testosterone levels. My Yale oncologist never replied despite many emails and texts. “Trust me,” he said, “there’s no way those scores are up, given the shots and chemo you’ve had.”
“The odds are a million to one that your levels are up,” he’d said when I asked about getting tested.
So, I got a blood test on my own, and the results revealed that both scores had spiked to life threatening levels.
When I sent over the results, the oncologist didn’t reply. This was Yale medicine? This doctor ignored my condition and was closed-minded and seemed a bit insecure, so I promoted my “second-opinion” oncologist at Memorial Sloan Kettering to the first team. She and her team are wonderful, all things considered.
I have had four doctors in my first cancer year. Two were terrible. I switched. Their two replacements are capable and empathetic and have my full confidence.
Most oncologists and medical care professionals fall into two categories, in my opinion: Those who sincerely care and will do whatever they need to do to do their job well, and those who are just paid to work in a hospital.
I prefer the former. I’ve observed that most high-stress doctors, urologists, and oncologists don’t like to be questioned or second-guessed. It’s the curse of a good education, I guess.
The tip-off is when you see their med-school diploma framed behind their desk. Underneath it should say, “Don’t question me. I know more than you do.” But, in fact, I analyze everything they say and test their conviction with tough questions.
My questions were simple: “I feel worse since we switched from the old med to the new one. Can we go back?” Or: “Your urology colleague thinks we should test again for PSA and testosterone, and I agree.”
Cancer is an expensive disease. Therapies start with low cost medications and standard-of-care “protocols,” many of which are over 30 years old.
I found that most old medications just don’t work, but I believe insurance companies wanting to keep the costs down mean doctors start with older drugs. You don’t hear about many people being cured with cod liver oil anymore, but it’s the same general idea.
In my experience, you only get the good stuff when you get really sick, after the cheap stuff proves ineffective.
Last month, after a year of debilitating treatment — ineffective but fully covered by my Medicare — my team prescribed a promising new drug costing $100,000 per year. I was eligible because my cancer was “treatment-resistant,” the secret password to open the door to Treatment Level Number 2 and promising clinical trials.
It’s been prescribed, but there was a lot of back and forth as my hospital, and I tried to figure out who was responsible for footing the medications on the “private reserve” treatment list. Eventually, Memorial Sloan Kettering and the drug manufacturer agreed to fully cover the cost.
Today, when someone asks me how I’m feeling, I usually reply, “I feel good. How are you feeling?”
But I don’t feel good. I get tired tying my shoes and need a 2-hour nap after a meal. I’ve been fighting bullies regularly since I was in the fourth grade, and I still am. The score in my mind is now 35–21 at halftime. I’m still far behind but making progress.
After 1 year of being sick, my advice to those in my position is this:
“Two- to 4-year life expectancy… ”