PCF thanks Mr. Merzer for sharing his personal story, and for his dedication and support during the 100 Miles in March walking challenge.
It is inevitable. It is part of life. It is how it all works.
Sooner or later, preferably later and not frequently, bad news arrives. For me and for those I love, it arrived last April 15 via email from the urologist, moments before my wife and I were to meet with our radiation oncologist to review the same report:
“I got your Axumin PET/CT and unfortunately it does not look good. There is the suggestion of metastatic disease to multiple lymph nodes in your body. This means that you will need systemic treatment…. I am very sorry that we did not have better test results. That said, there still is a lot we can do.”
Everyone reading this knows that the words “there still is a lot we can do” are true, but also stop short of being fully reassuring. That phrase describes a path that will be followed – and that may not be lengthy before it ends.
So, given this reality, how does one respond emotionally, how does one interact with others, how does one…live…with this situation and this knowledge?
More about that in a moment. But first:
As I write this, the path forward is carrying us – my wife Marion and I – on the Prostate Cancer Foundation’s “100 Miles in March” journey. The project is intended to raise funds but also, importantly, to elevate awareness of prostate cancer (PCa). We are doing our best to assist.
After maintaining some distance between my Facebook page and a less widely read blog created to track my illness and treatment, I shared on Facebook a fundraising link for the “100 Miles in March” challenge – and I shared the first summary there of what we have been dealing with for the past nine months. Actually, the past four years.
That post triggered a humbling and comforting outpouring of support. And it inspired many friends and relatives to redouble their efforts to monitor the tell-tale Prostate Specific Antigen blood marker. I count that as a major win, even as we still tally our March miles.
The elevator version of my case: After an 18-month interregnum in radiation and androgen deprivation therapy (a break not taken as a “vacation” but in the hope and expectation that the beast had been slain), PCa was back, big time. Over a period of just four months, my PSA exploded from 0.7 to 6.5 and then, a month later – what the what?! – to 11.6. The scan showed extensive metastases throughout my lymphatic system, from my chest all the way down to my pelvis, and, again, in and around what was left of my prostate.
The undeniable verdict: Stage four metastatic advanced prostate cancer, with the likelihood that forward scouts with malignant intent were canoeing through my bloodstream, intent on forming more landing parties on distant shores.
Surgery was out, as was any immediate assistance from my radiation oncologist, who won our Most Valuable Player award during my rookie prostate-cancer season in 2018 but now was just observing from a skybox. Instead, summoned from the bullpen on an urgent basis was a PCa oncology expert who didn’t let me leave his office without the first two of a series of Firmagon shots in the belly. Ouch! Also, double ouch!
Today, with the forces of evil in partial retreat, I’m back on Eligard® (every-four-month blasts from the 2018 past) and Erleada®, both intended to starve the cancer cells of the testosterone they generally need to thrive. Also, for good measure, I’m getting Prolia® to strengthen my bones, the cancer’s next likely landing sites. The side effects of all of this are substantial but tolerable.
We are aware that this will not last long and that, as the wily cancer cells figure out how to rally and stage new assaults, the treatments and consequences will become more harsh.
So, returning to our theme, how does one deal with these realities on a daily, hourly, minute-by-minute basis? Just as every manifestation of this disease is different, so, too, are the reactions and responses of each patient.
I want to make clear that what follows is applicable only to me – I make no value judgements regarding the responses of those who may be in more physical pain or emotional distress. Also, I am blessed with a caring support system – wife, adult daughter, grandkids who bring us joy while only vaguely aware of my condition, and friends.
All of that said, I don’t deal with this in an all-consuming manner. Or at least I try not to. By this I mean I do not engage in a countdown of sorts. “Well, that’s another hour gone, another day gone. One hour, one day closer to….” That’s not what I do – at least not to any greater degree than I might have before the diagnosis came in.
Pressed for a predicted expiration date, the PCa specialist estimated five-to-seven years (now discounted to four-to-six years). At 74, that’s not a terrible deal.
Importantly, this would be a much different story for a man in his 40s, 50s, even 60s. And it very often is. Five to seven years or fewer? With side effects that could be even more debilitating or discouraging or depressing for men of that age? Who still might have children in the household?
We’re on several of the Prostate Cancer Foundation’s Facebook message boards. We read the accounts. We track the cases. We mourn the losses, especially the early losses.
In my case, at 74, I find myself reasonably composed and serene, maybe even dispassionate. I made my living for 50 years as a news reporter at a fairly high level. As such, I tend to be – pardon the expression – clinical about most matters.
The way I see it, everyone has a finite stretch of time. I choose not to squander any significant amount of that time by worrying about the countdown clock.
Sure, it’s on my mind – on our minds – from time to time, but not in a dominant way. We see the physicians. I take the meds. I roll with the side effects. We move on. Many mornings, it’s not until I finish washing up that I remember, “Oh, yeah. That.”
Not to be cavalier about it, but my wife, Marion, and I still move through what passes for our sort-of-normal lives. We hang out, we take long(ish) walks (especially this month!), we share meals, we help raise the grandkids, we spend time with our friends.
I have assigned myself two overarching missions: 1. To spread the word about the crucial importance of PSA tests and other forms of monitoring. 2. To demonstrate to others, particularly my grandchildren, how one confronts significant adversity.
This is not to say that it’s all super-duper. I often run out of energy. I call these “brown outs.” The meds kick in, the power goes out and the only way to hit the reset button is through a nap. Happens one to three times a day. Also, every now and then, generally when I’m arising from a chair or otherwise changing position, Marion notices a grimace on my face and says, “It hurts?” I say, “Yeah, but it’s not too bad.” And that’s true.
I do not feel sorry for myself. I really don’t. Stuff happens, especially as one ages. But to be perfectly honest, I am a little pissed off. For one thing, my body is betraying me. Bad stuff is going on in there and it stayed under cover and it’s a stubborn thing and…it pisses me off.
Also, we navigated ourselves and our family through the COVID crisis and we got our vaccinations and we were just coming out of quarantine last year and we were just resuming a semblance of normal life and then…wham. This. And that pisses me off, too. Ah, OK. That’s off my chest. Well, actually it’s in my chest…eh…never mind.
What I am a little worried about: This is the best I’m going to feel for the rest of my life. It could be a lot worse, but it’s not really…swell. And it’s not going to get significantly better. My oldest friend – we’ve known each other since birth – recently asked, “Do you have any good news? Are you getting better?” Well, that’s not the kind of situation we’re in here.
In response to the meds, the PSA blood marker is diminishing, which means that the lesions are growing/spreading more slowly and some likely are shrinking, but “good news” and “getting better” are more relative terms now than they’ve ever been before. Other, stronger regimens with other, more difficult side effects are going to be required at some point. So, while I really do appreciate where I’m at now, I am concerned about where I’ll be in a year or three. Nothing can be done about it, other than front-loading now all the stuff I’d like to do.
Outwardly, there is no obvious change in me. People say, “Hey, you look good.” That’s kind, and I understand the thought behind it, but the truth is that most cancer patients, even end-stagers like me, don’t show any obvious signs of it until near the end of the end stage, when they might grow emaciated. Thankfully, we’re not near that now.
Someone on one of the Prostate Cancer Foundation’s Facebook pages posted that he sometimes feels a little guilty about the absence of exterior signs of his condition. He wrote: “It’s almost like, ‘Are you sure you have cancer, because you don’t look like it.’” I know where he’s coming from, but you can’t blame or judge people for what they say. Each relative or friend deals with this situation as best they can – and each person deals with it differently.
I’ve lost it – or my version of losing it – just once so far: When I received that email from the urologist summarizing the findings of the scan – that the cancer somehow had broken free and was spreading throughout the lymphatic system – and walked in to tell Marion just before we headed to the radiation oncologist to hear the full assessment.
My voice cracked and I teared up and it wasn’t because of what it meant for me – it was because I felt guilty that I was bringing this on her and our daughter and the grandkids and the rest of our loved ones. Don’t bother – I know that such guilt was and is misplaced. I didn’t cause this to happen. But the whole point of this exercise is to be brutally honest about what’s going on here, and that is what I felt at the time, and to some extent, still do. And I know from reading the foundation’s Facebook message boards that I am not alone in this.
The other day, a friend who saw me at a sporting event said I looked “pensive” and in need of a hug. I can’t deny it. It happens sometimes.
But here’s the thing: Winter, a real thing here in North Florida, is just about over. The grass is greening, the songbirds are returning, the oak trees are budding and the azaleas blooming.
Spring and summer are approaching, and great warmth still is generated day after day, hour after hour, moment after moment by family and friends.
Whatever happens and when, I am in a good place. I am OK. I will be OK.