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. They sent me on my way with instructions to get my PSA checked more often than the average guy, which I did.

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 sustenance 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.

10 Replies to “The Long and Winding Road [effective 2018.04.21]”

  1. “Which I embrace, without reservation, as delightful news.” And being well enough to enjoy it is even more delightful. Hang in there!

    1. Oh, absolutely. I am extremely grateful for that (despite my chronic whining and bitching about aches and pains, of which there are many).
      It’s been made abundantly clear that there will come a time when my Quality of Life is being measured in degrees of suckage. And I’ll burn that bridge when I get to it. But this morning? It’s a damned good day.

  2. Thanks for this update. You are one of my favourite persons, and I’m grateful for the news that things are looking better. Hope the beast can be pushed away further. If loving thoughts can help, you know there is an endless stream of them coming your way from me.

  3. My dear old friend, I am so glad that there was good news from a doctor type…like you, I celebrate small victories even if temporary. As usual the point is, we ain’t gone yet so enjoy , love, cherish what we can in this moment. Share it, always share it…you are loved and cherished and I am so grateful we are sharing this human walk together…

  4. Glad the news is good. As an optimist I believe one never knows if 2 years will become 4 or 8 or more. Remember our friends who were given a year at most when they got their AIDS diagnosis— here they are 28+ years later. Love you AC.

  5. Yes all any of us has is today you are just cleared that you are on golden time so investing it what makes life good. One of my friends had 30 years of golden time they just came up with a new drug that extended her options , I believe it was because she lived her time so we’ll. Love to you .

  6. Bittersweet stuff, Ace. If the love and hope I and others feel for you were medicine, you’ll be dancing, writing, loving, and laughing for decades to come. Lupron and Casadex, sounds like a high-powered law firm, appear to be doing their job; I’m hoping they keep you punching for a long time. I love you, my brother. You bring light and joy and laughter to many.

    I’ll stop now. Hard to see my dwarf screen through the waterworks.

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