The Long and Winding Road [effective 2018.04.21]

So yesterday I made the longish drive up to San Jose for the “routine check-in appointment” with my oncologist.

We covered where I’m at, and how things have (and haven’t) progressed since they upgraded me last summer and declared me officially “advanced” now—which was, you may recall, the impetus for launching this blog in the first place.

At the time I graduated to Advanced Prostate Cancer Patient, she’d told me that, given my situation, I should expect to metastasize “within a year,” and that, on average, survivability after that point is generally a year or two. So, I brought that up with her yesterday. Because here I sit, eight months later, jaunty jolly, waiting for the damned shoe to drop and my quality of life to start getting shitty fairly quickly.

Here’s the thing: At the time they escalated my diagnosis, the “doubling rate” on my PSA count was rolling like a runaway gravel truck with blown airbrakes on a stretch of road coming off the mountain. Fast and getting faster.

So, concurrent with my newly acquired Big Boy status, they deployed some new (new to my personal ecology, not new to the field) pharmaceutical weapons which are sometimes helpful.

I’d been receiving injections of a drug called Lupron ever since my number started to creep up again a few years back. They had given it to me for several years after my radiation treatments back when I was first diagnosed in the early ’90s, but then discontinued it when things stabilized and sent me on my way with instructions to get my PSA checked more often than the average guy.

If you’re not familiar, Lupron suppresses testosterone production. See, testosterone is like Happy Meals for prostate cancer cells, and the idea is that, by removing that from the body, you starve out the little bastards.

It’s actually pretty effective, for a while. But the thing about cancer is that it’s persistent, and creative. Eventually, when it gets tired of being malnourished, it mutates itself so it can comfortably find nourishment elsewhere, and starts replicating again like cellular level bunny rabbits.

So anyway (sorry this is so “long way ’round,” I’m tired and I guess I’m feeling like I need to spell this out at this point), I’d been back on Lupron for two or three years when they decided I’m officially Advanced (and therefore ultimately terminal) now. And, while continuing the periodic injections, they added a daily oral medication, Casadex, to the mix.

As I understand it, Casadex essentially inhibits the ability of my cancer cells to bind with ANY of the hormones in my body, including any residual testosterone and the three or four other things I never knew we have that exist on the biological spectrum somewhere between testosterone and estrogen (which, by the way, we all have within us as well).

Often, though not always, this effectively slows down the cancer’s progression until it once more, adjusts to the changing ecosystem in my body and gets cooking again.

The good news is that it seems to have worked like a champ in my case. My PSA numbers have been knocked way down, and stabilized at a level that, in a guy who didn’t have the cancer, would be just dandy. Unfortunately I do, so the effect is temporary. In time, we’ll see my numbers start to get away again; but that is then. This is now.

Anyway (finally!) what this all boils down to in the near term is this: The oncologist’s officially operable wisdom at the moment is that I can expect to metastasize one to two years from the time of my advanced restaging (last summer).

So, I’m still on the long offramp, but it’s appearing at the moment that the ramp may be a bit longer and I may be rolling a bit slower than we were previously led to believe. Which I embrace, without reservation, as delightful news.


There’s an old joke about the difference between an optimist and a pessimist that goes something like this.

The two old friends find themselves in The Big City for the first time, encountering that modern wonder known as the “skyscraper.” They’re standing on the sidewalk in front of a building famous for its observation deck, debating whether they should go up and check out the views.
The pessimist flat refuses to get on the elevator and go up to check it out. “I just KNOW something will go wrong and one of us will fall!” he declares.

“OK, fine,” responds the optimist. “I’m going up by myself,” he vows and steps into the elevator.”
Once up on the eighty ninth floor, he heads outdoors to the observation deck and is immediately vindicated. It’s a beautiful, sunny day, and he’s standing at the highest point in the city taking it all in.
It’s so spectacular, he leans out for a better look and, sure enough, loses his footing and tumbles off into free fall.
But remember I told you he’s the eternal optimist. As he’s falling eighty nine stories to certain death, he calls out to folks looking out their office windows as he passes each story, “Doing great so far!”


Some days—hell, a lot of days any more—I find myself identifying with that mythical optimist. Yes, I know how this ends. But in the meanwhile, I’m doing great so far.

Just a little moment to share

Somewhere in a box of unsorted cassette tapes, stashed somewhere in my stuff, there is (I hope) still a tape I made of Elizabeth Cotten performing live in a tiny club (I can’t even remember the name of the establishment) on Upper Grant Avenue one night in the 1970s.
It was a magical evening for the 50 or so folks who were there.
I’ve spent a significant portion of my adult life in and around music and musicians; I can’t think of anyone more gracious, charming, and warm than Libba Cotten.
The woman (who must have been in her 80s then) just held the room in the palm of her hand all evening, exuding a center of love, peace and humility which was remarkable.
Oh, and yes. Even then, she could play and she could sing. In her simple, direct fashion, to be sure. But in a way that compelled respect; not by force, but by generosity.
One of the privileges of my life to have spent an evening breathing the same air as she.

Been quiet here too long

I actually thought of two or three fresh topics in my sleep last night, and this isn’t any of them. They’ve gone on the list on the whiteboard, and I vow I’m gonna find the time to write some of this out.
But, in the meanwhile, seems right to at least check in, show the flag, and say a little about current events in the ongoing scenic railway of my life.
What follows is essentially a cut and paste of this morning’s Facebook “status update.” But it is words. Describing events of some importance to me. And thus…

The holiday? Well, truth be told I did not observe April Fools, or either of the other major points on the liturgical calendars of believers in a couple of our major faith traditions yesterday.
I did however enjoy the opportunity to spend the weekend in the Big City with some Quality Companionship.
Dinner and a looong hang with a man I’ve known for a solid half-century, who has to be counted one of my closest friends in this life, extending into a lovely Sunday Brunch (featuring another old and valued friend) that took half a day.
Both of us are at the far end of our arcs now (though, if I had to bet money I’d say my offramp is a couple exits ahead of his, but who knows?). There was, at least for me, deep pleasure and satisfaction in comparing notes on rich lives well lived; at times together, at other points in parallel.
And, as a bonus, I even enjoyed finally having an opportunity to actually get to know his life partner of the past eight years a bit better. We’ve met a number of times, but never really the chance to get beyond surface stuff before.
 
Then, before coming back home to our little valley last night, a chance for some comfortable quality time with another City Denizen who began as an “interesting acquaintance” a few years ago, and has evolved to “good friend.” The funny thing is that we moved in so many of the same circles when I was still in SF some 40 years ago, but apparently never met.
And yet, we “have history.” So many loved ones in common, we’ve even compared enough notes to establish we were actually in the same rooms for the same shows on several, if not numerous, occasions. Have to have been a few nights we actually passed within a few feet of each other backstage, it seems.
I don’t think there are enough years left to either of us to really unpack all the intersections, but it’s a delight to find my regard for someone I initially respected as a writer and musician expanding as I come to understand the amount of heart and passion in play.
I have been, and continue to be, privileged to live a life filled with truly remarkable people and my heart spills over with love and gratitude.
 
Some days are discouraging, and I almost lose sight of that until it’s time for me to sign off with my wishes that you all Rest in the Love. Other times, like this weekend (and this morning’s retrospection) it would take someone far more obtuse than I can be to miss it.
 
Happy Monday, folks.