Tales From the Dark Side

I’m about as far from the target demographic for Demi Lovato’s music as a person can be. Hell, I’m old enough to be her grandpa; been clean and sober longer than she’s been alive.

To be honest, I’d never heard of her until her highly publicized overdose this week. But when the news broke, it didn’t take long for me to learn who she is. And it took even less time for the ignorance and judgment to rear its head on social media.

Twitter and Facebook were awash in comments on threads about the news. People expressing anger and disappointment at her “choice” to relapse. Arguing that the “disease concept” is exculpatory claptrap aimed at absolving bad actors of responsibility for their behaviors and decisions.

You’d think by now I’d be used to it. Every damned time there’s a high profile “slip” by someone battling personal demons whose life is chronically documented by paparazzi and the ghouls at TMZ and all its imitators, the chorus begins again.

A part of this has nothing to do with alcoholism and drug addiction.* It’s really more about the whole social context of our “celebrity culture.” In our instant-access internet and social media fueled environment today, I think the dysfunction has grown more extreme. But I saw it when I worked in the music business almost a half century ago.

Consumers (or “fans,” if you will) find themselves touched in some way by a personality; their performance, their persona, their perceived lifestyle, whatever. And they bestow on these folks a degree of admiration, affection, and perceived personal connection that may be barely, if at all, tethered to reality.

This isn’t necessarily unhealthy in itself. One thinks of the devotion that hormone-intoxicated adolescent girls of my generation bestowed on the Beatles, for instance. For most, it was a bonding, coming-of-age experience that eased their transitions from childhood towards adult life.

But somewhere there’s a tipping point towards unhealthy obsession, in some cases an almost stalker-like sense of “ownership” of the object of their affections. This can create dangerous, sometimes self-destructive behavior by the obsessed. And also creates serious potential pitfalls for the target celebrities.

This is why a significant part of the work for support staff who surround performers, in addition to facilitating technical aspects of a show, is about insulating the artist from the public. Egalitarian ideals notwithstanding, there’s just too strong an element of unpredictability involved. Some performers like to flirt with this side of the live event dynamic, but things can go sideways in a hurry if that “walk on the dark side” isn’t carefully managed (the Rolling StonesAltamont concert being the most well known example of how things can go terribly wrong).

But I’m drifting off point. Sorry.

One of the other ugly components of our culture’s dynamic around celebrity is how quickly that affection and adulation can sour when one of the “privileged” falls short of the public’s expectations. Whether it’s sports fans’ often vehement dissatisfaction with a star athlete whose performance fails to win the day, or the expressed outrage when a favorite actor, known for their heartwarming performances, is revealed to be an absolute shit to crew members or their family, public perceptions can flip in a heartbeat. This is exactly why the massive corporations that earn billions from marketing entertainment to the crowd employ entire subsections of their publicity departments devoted to managing negative press.

I’ve gone a long way ’round the park to say that I think this is part of what underlies some of the hostile, often uninformed reaction when a celebrity, especially one who has very publically (thanks, in part to those same damned PR flacks) confessed their sins and “gone into rehab” before. We gave ’em their damned Second Chance already. What the hell here?

C’mon, people who’ve achieved this level of celebrity enjoy a level of pampering and privilege unimaginable to most of us! The clothes, the cars, the special treatment. They should be appropriately grateful and humble. They should act right, dammit.

 

So, to be sure some of the venom that greets news of an overdose, a fatality, a DUI arrest, or other addiction-related mishap is a natural element of the whole love-hate celebrity thing.

But, in my experience, a lot of it remains a creature of the basic misconceptions that float around out there. And I really want to spend some time on that; more time than one can spend in a Twitter thread or Facebook note.

I guess I’ve lived a fairly insulated life the past three decades or so. My spouse worked in the treatment field for many years. I’m in my 38th year of continuous sobriety. The majority of my closest friends are also in recovery—and those who aren’t themselves, and have known me long enough, are damned glad that I am.

So I’m always taken aback at the public reaction to a high-profile overdose or other public and visible derailment of a personality who has declared themselves to be in recovery. The most recent example before this week that comes to mind was the death of Phil Hoffman, but we see it happen over and over again.

Once the news breaks, the clattering and chattering on social media begins almost immediately. And by now, it’s a pretty familiar pattern. Someone will pass a comment about how “sad” it is (and yes, indeed it is) that so-and-so lost the thread of maintaining their recovery, and the floodgates immediately open.

We hear from fans who are angry; pissed off that someone they perhaps admired has “chosen” to get high again; condemnation of their “selfishness” and lack of consideration for family, loved ones, and public followers.

Much backing and forthing ensues, with some folks (usually either people in recovery or parents and others who have direct experience with an addict in their lives) pleading for understanding—reminding others that addiction is a disease. A surprising number of folks will snap back, flatly denying the disease model of understanding addiction and insisting that’s just a rationalization to avoid taking responsibility for one’s actions.

By the way, probably worth noting here that, though this may sound contradictory to the uninitiated, understanding addiction as a disease in no way absolves or excuses the addict from the responsibility or consequences of their behaviors, decisions, and activities. One of the most important central tenets of virtually all treatment/recovery models of which I am aware is the exercise of identifying, taking ownership of, and making amends for all the ways in which we’ve harmed others.

In my experience of over a half-century with alcohol and drugs and the people who use or abuse them, virtually no one deliberately sets out to become an alcoholic or addict. And understand this: somewhere in the neighborhood of 90% of those who use, either recreationally or medicinally, don’t develop the pathology.

But for that remaining tenth of us who just weren’t wired up like the rest of you, either biochemically or emotionally, it’s virtually impossible to step back once we’ve discovered the first thing in our lives that seems to make us feel whole and “normal.” By definition, if we were capable of making rational choices about whether the use of drugs or alcohol was a good idea for us, I think we’d likely fall somewhere within that other 90%—even if we have some history of excessive behavior, often when young.

It’s not my intention to spend a lot of time here laying out the scientific and medical arguments, that information is readily available if you’re interested. I want to talk about how it feels for those of us who share this affliction to encounter the levels of vehement judgment and ignorance that continue to exist, despite the much higher visibility addiction and recovery “enjoy” today.

It’s painful. It’s frustrating. Sometimes bewildering. And, despite the inclinations of many late night comedians, not goddamned funny in the slightest.

Look. I’m not asking people who aren’t alcoholic/addicts to somehow modify their behavior to accommodate the minority of us who are. That would be absurd. I guess my point here is to remind folks that feelings aren’t facts. And to point out that broad statements about how the dynamics of addiction work from folks who clearly do not know (a) can be hurtful and (b) for damned sure makes you look the fool to anyone with even a modicum of education or experience with those dynamics.

And, in a perfect world, I guess I’d like you to know that nobody—absolutely nobody is a harsher critic of that alcoholic/addict than they are. No one is more disappointed in, or frustrated with them.

There are few hellscapes more dark or bleak than the internal dialog going on inside the mind and heart of someone who truly ought to be clean and sober but just can’t seem to find the handle.
And know this, too. Far more addicts and alcoholics fail than succeed at this recovery deal. Somebody much wiser than I once said “it’s simple, but it ain’t easy.”

[Addendum: There’s a young man I’ve made “friends” with on the Twitter machine these past few months who sits at the complete other end of the arc of Life in Recovery from me. He’s just achieved the milestone of 9 months sobriety this week. He was moved to share some thoughts about our shared affliction as well, and I strongly recommend them. His name is Sam. His piece is up on Medium here.]

UPDATE: The news guy inside me insists on this followup note. Ms. Lovato has released a statement. Rolling Stone has her text in its entirety along with a brief story here.

________________________
*or other addictive behaviors such as compulsive gambling, eating disorders, etc.

Fortunate Son, Part 1

So much of what I’ve been able to witness and/or be a part of throughout my life are, frankly, the product of Happy Circumstance. Seemingly random occurrences which placed me in the right place and time, with the right people.

Start with the very fact of my existence. It would seem that my old man enjoyed a bit of good fortune himself. As World War II got into full swing, just about every able-bodied young man was expected to play some role in service to the war effort.
Lou elected to volunteer for the Coast Guard, which had been placed under the command of the Department of the Navy “for the duration.” After completing basic training, he was assigned to a ship, and traveled to San Francisco to assume his duties.
The ship was anchored in San Francisco Bay, off Treasure Island, with orders to depart for the South Pacific sometime in the next 48 hours when the hand of fate, as manifested through the military bureaucracy declared him an official Lucky Bastard.
Prior to the war, Lou had some experience working in a teller’s cage for a bank in Des Moines (it was the Depression—you took  work where you found it). As a result of that background on his résumé,  he’d been declared, in Navy parlance, a Storekeeper, which essentially meant he could drive a typewriter and add a column of figures.
Thus, when some gold-braided officer ashore determined that another half dozen or so enlisted men who were at least semi-literate were needed for clerical work, he was one of those who plucked from the rolls and ordered off his ship.
Thus, instead of spending the war (or as much of it as he survived) engaged in the ongoing floating hell that was the Pacific Theater, Lou’s war was fought  in San Francisco Bay on Alameda and Treasure Islands, and he spent most of his off duty time in the City.
So the fact that I exist at all can really be tagged as a happy accident. The odds of him surviving four years in the South Pacific and finding his way home physically and mentally intact enough to father me (given how emotionally damaged he was already) have to be pretty slim.

San Francisco was a hell of a place to be in those years, especially for a guy dressed in Navy blues. It’s hard to imagine what it must have been like for a twenty-something kid from the Midwest who’d never been out of Iowa.
But I know this much. When he was mustered out after the war, he made a beeline back home, told his honey “we are NOT spending another winter in this, you won’t believe what I found” and started packing stuff into the old Chevy.
After a leisurely cross country trip along the Southern Route (US 66), the young couple landed in the Bay Area, initially renting an apartment in Burlingame before buying a brand spanky new tract house in Santa Clara and moving just in time for me to be born just after the New Year in San Jose Hospital.
So, once again: Lucky Me. Instead of growing up in the summer heat and humidity and winter ice and snow of Iowa, I’m a Native Californian. Actually, better than that, I’m a Bay Area native (there are many Californias; each with its own unique personality).

It would be hard to overstate how fortunate I feel having had the chance to come of age in California in the latter half of the 20th Century. Visitors from places around the world come away impressed with one thing or another, depending on their tastes and priorities. Almost all seem to find something to carry away with them they see as memorable and exceptional.
There’s a lot to love. And it’s remarkable for its diversity as much as the special flavor of any particular piece. Whether it’s snow crowned mountains, sun kissed beaches, or stark desert; urban or wilderness, you can find it within our borders, often just a couple hours drive away.

Growing up in The Golden State, and spending the bulk of my life here has infused me with a depth of appreciation born of decades of intimate familiarity. I imagine a first time visitor may be, in some respects, more “wowed” by aspects that have long since become commonplace for me. But the other side of the coin is that living here for so long has built within me a rich sense of love for this corner of the planet. There may have been a time in my youth I didn’t fully appreciate what a privilege it is to be here; if so that time is long past.

It’s difficult for me to find the words to describe my love for this place, and my sense of connection to it. I spent my childhood within a few miles of San Francisco, and once I left home the bulk of my youth and young adulthood found me in the City, at the center of a cultural and artistic moment unparalleled in my lifetime.
So, that I love. I also love spending time under the cool, quiet canopy of groves of redwoods that were already old when the Roman Empire was spreading across the “known world.” I love the subtle but insistent beauty of our deserts.
I am nourished by the soul healing, ever shifting waters of the Pacific Ocean, whether those waters wash the sands of sun kissed beaches or crash dramatically against rock cliffs in the endless dance of dominance along those hard shores. Driving through the grass covered rolling hills of California live oak country infuses my heart with a lyrical gratitude that, after a lifetime of absorbing it, I still don’t understand.
And this barely scratches the surface. I’ve not even talked about the remarkable character of the birds, beasts, and fish that still find space for themselves in our ever more populated state. Haven’t begun to explore the wonders of our climate, and its perfect pairing to the needs of the human body.

Nor have I really done any unpacking of the story of humans on this land, from the earliest first peoples who lived quite comfortably, if simply, in the bounty nature provided for untold centuries on into the stories of successive waves of newcomers to the state (with all the good, and terribly bad those stories encompass); or spoken of the fascinating structures and other artifacts those generations left behind for us to explore and try to understand. And still today, there are parts we get right, and parts we get wrong.

Lucky me. I’ve had the privilege to call myself a California native for almost seven decades, now.

Turning once again to the specific fact of  growing up in the Bay Area in the 1950s and ’60s, it’s important to note just how deeply I perceived myself a misfit, pretty much as far back as I can remember.
Some of that, no doubt, was the result of environmental factors, be it a childhood in an alcoholic home or the fact I was a poorly coordinated, unathletic, glasses-wearing kid who was an easy target for schoolyard bullies. Some a function of my own internal dialog. I never really felt a comfortable and confident sense of mastery; that I truly belonged anywhere, really.
And, as I commenced my fitful slide toward adolescence, and beyond, that sense that I didn’t fit grew increasingly to dominate my narrative. That was when the indescribable good fortune of being located a few miles from San Francisco, just as the City was becoming the center of the counter-cultural universe, really made itself apparent.

More on that is ahead in Part 2 of this narrative. For tonight, I’m wrung dry.

 

Every Day is “Mother’s Day”

I posted this up on Facebook late Sunday. And, I confess, reaction was so strong I’ve been persuaded to repost it here so it sticks around.


I’m tired and more than ready to log off, but I wanted to at least acknowledge, and share a thought or two about Mother’s Day.

To those among my friends for whom this day remains a pure, happy celebration of love, my deep and sincere best wishes.

But, I’m keenly aware that there are a number of folks who, for various reasons, land somewhere between “mixed feelings” and “raw grief” this day.
And I send my heart’s desire for peace and comfort your way as well.

  • For the children who have lost a loving mother.
  • For those who feel they never knew a loving mother.
  • For the women who mourn the fact they were never able to have children.
  • For those who made a thoughtful, personal choice not to have children for good and valid reasons but who nevertheless feel left out, if not judged, on
    Please see note.

    days like this.

  • For the mothers who have had one or more children die or go missing, and are living their lives now carrying a gaping, invisible wound that never fully heals and will be with them all their days.
  • For the single fathers who find themselves trying to be mother as well.
  • For the grandparents who thought they were headed for retirement but instead are now raising a “second family.”
  • For the mothers and children separated by incarceration, war, or politics.
  • And for all the others who’s particular situation I have not called out here, but who found themselves feeling “out of step” with the dominant narrative today.

May you all love and be loved; may you feel peace, safety, and connection; may you all sleep tonight with full hearts.

Note: I found the artwork that accompanies this post a couple days later on a friend’s Facebook page. Seemed to drive the same message so well, I thought I’d include it here. It was created by Boston artist Megan J. Smith for their Repeal Hyde Art Project. You may want to check out the project’s web site here.

On privilege and things

NOTE for regular readers:
As you know, I avoid the overtly political here, reserving that sort of traffic for my Twitter and Facebook accounts. The avowed purpose of this blog is to honor my medical diagnosis and do what I can to “download” whatever experience and—dare I say?—wisdom I’ve accumulated before my run here is finished.
But here’s what happened. A young man from Rockford, illinois who calls himself Jimmy B.O.A. posted the following Tweet, which sparked an exceptionally interesting comment thread (Jimmy clearly has high quality followers). I wanted to join in, but quickly realized my remarks would extend too far beyond the 240 character limit to even build a thread. Thus, a post here which I can link in the comments.
And besides (he adds in his best self-justifying voice), this isn’t about a “news of the day” political issue. It does speak to a piece of who I am which, I submit, gets it past my self-imposed “no politics” rule.
First, Jimmy’s Tweet:

POC can fight against racism until the death of them. Shit will never change, until the minute good “White Folks” speak up, and condemn each and every person that commits “Racial acts” against people that doesn’t look like them.

You. Must. Not. Spare. A. Racists. Feelings.

Let’s set context first, OK? I’m an old white dude, a bleeding edge boomer specifically. And I’ve been speaking up and speaking out my entire life. Attended my first civil rights march when I was, not sure now, either 12 or 13 years old. Was involved in anti-war activities and efforts to support UFWOC (later UFW) by the time I was a freshman in high school. Et cetera, et cetera. So, I’ve “been to the barricades” many times, and I’ve never stopped advocating for what seems right to me.

And I’m grateful to Jimmy for launching this thread. It has kicked off some interesting and useful conversation (something that seems a rarity rather than the rule much of the time on Twitter).

I absolutely concur. Nothing changes unless and until those standing in the way of change are challenged and called out. One of the advantages of being my age is that I have seen this play out time and time again on any number of specific issues over the decades. Barack Obama and Dr. King were right about the arc bending toward justice, but it’s a long arc and it needs our help along the way.

Need to say though, that as I have continued to “do the right thing” as best I can, I have had to learn a lot of new stuff over the years. And a lot of that has to do with privilege. There was a time it all seemed pretty simple to me (if a little risky at times). When I saw something that seemed wrong, my job was to stand up and speak out. That remains my guiding policy, but in recent years something began to happen that confused and disturbed me at first.

And I’ve seen some folks post up about it in this thread. Other white folks whose feels got bruised when they tried to speak out and someone challenged them (sometimes caustically) on their standing to discuss the issue.

See, I’ve come to believe that confliction (a lot of it anyway) is all about privilege. And I’m realizing one of the most pernicious things about privilege is how difficult it can be to recognize when you’ve enjoyed it your entire life.

In today’s context, now that someone has invented and defined the term “ally,” it just won’t work any more for me to roll up and start white mansplaining to folks who are marginalized and disempowered in one way or another how I think they “should” act to be most effective (let alone how they should feel).

Because I don’t know what I don’t know. Oh, yeah. I’ve spent periods of my life impoverished. I have more than a passing acquaintance with alcoholism and drug addiction. I’ve seen the inside of jail cells for less than noble reasons, lived in “the inner city,” and on and on. But when all is said and done, I remain a white male and therefore, by default, less vulnerable and exposed than many others.

When in discussions—especially discussions about “resistance” of one sort or another, but really discussions of any sort with POC, women, LGBTQ+, and other friends and associates I love, respect, and want to support, I’ve learned I have to listen before I speak. To stay open and receptive. To stop and carefully consider when someone tells me to “check my privilege.” Then, if I still can’t see it, to ask for help.

Yes, it can be uncomfortable at times. Especially when those challenges land in a way that feels like my intentions, motives, or sincerity are being questioned. But I’m finding that beyond the discomfort there is important stuff for me to learn and understand. About myself, and about the people I want to support.

Also, I believe it’s damned important that the conversation has been elevated to the place where privilege is on the table. The fact that certain members of that dwindling dominant white male culture feel so threatened and put-upon by voices for change (and are completely blind to the absurdity of claiming they are somehow “victims of discrimination”) speaks to that importance.

So, yeah. I will continue to speak up and call out my cis male white brethren whenever and wherever necessary. I’ll also participate and, if it seems appropriate, offer my input and opinions to my sisters and brothers in the struggle; but I will do my best to do so with humility, an open heart and mind, and the understanding that it’s not my job to be the lead sled dog.

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.

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.

What Condition My Condition Is In [effective 2018.02.23]

Because several folks have asked recently (and I thank you for your interest and concern), it appears it’s time for a progress report / update.

I had bloodwork done last week, and got an email from the oncologist on Tuesday advising that my “PSA remains stable .”
So apparently the assumption, based on my numbers, is that the cancer has not significantly metastasized yet, and is still getting its little cellular brain wrapped around the fact that we added Casadex to the mix (I’m also on a schedule of injections of Lupron, which is time-released into my body — how much detail on this stuff do you really want?).

That’s reassuring because I’ve noticed something about myself, and how I’m processing all this. Despite the fact that, as we’ve discussed before, I feel like I’m “in a pretty good place” about the fact we’re working our way through the late innings here, there is a part of me that remains pretty emotionally invested in just how things are going, and is rooting pretty hard at this point for this to take a while to play out.
And, as a result of that, I’m a little “over-vigilant” about relatively subtle shifts in things like when and how I fatigue, my overall pain level — and any new or unexpected spikes in same, along with other new manifestations of aspects of how I am in the world that might be indicative of something.*

At any rate, things remain dandy (all things considered) for now.
Working on some exciting projects with Yoshimi that I don’t have permission to talk about yet, but I think it’s going to be very cool.
We’re still in the process of getting ready for what I’m calling “The Last Great Road Trip” this Fall. At some point I expect I’ll get all self-indulgent and bore you with extensive details of the plans. We’ve been saving up for this since long before I got my diagnosis upgrade last summer. And yes, if you have spare change you’d like to toss in the pot, all support is welcome. Here’s the GoFundMe for that.

One other thing I should make note of, since we’re here talking about prostate cancer. If you’ve been keeping score at home (or, perhaps you actually read the “set up” backgrounder the first time you came here) you know I’ve been living with prostate cancer for 18 years now, and only recently have the medicos finally stood me up against the wall and declared me “advanced,” and therefore a short-timer.
Well, as a result of that I’m always interested in who else is a member of our large, and involuntary “Big C Club.” I count myself lucky, indeed, that I’m able to play the role of Trail Guide from time to time when somebody I know has that initial diagnosis dropped on their head.
No matter who you are, or what the specifics of your diagnosis and prognosis, my observation is that it always seems to rattle us when “The C Word” gets tossed into our lives. It’s a different country out here, and it can be damned helpful to have somebody to hang with, especially early days, who knows the lay of the land a bit.
In that regard, I rode along with a friend and his wife last week to be the “extra set of ears” and, if necessary, advocate at his initial consult with the radiology oncology Doc (he was still in the process of learning about his options and deciding if getting sliced and diced or nuked looked better for him).

A couple cool things happened on that trip. First, while we sat in the waiting room before being called in for our appointment, an old and dear friend and her husband emerged from down the hall. I recognized that “I’m keeping a good front up but my world just imploded and I’m scared as shit” look on her face. As he went to the desk to take care of whatever business was needed with the front office staff she hurried over and asked “what are you doing here?”
I quickly gestured to Ed and replied “I’m just a ride-along buddy today, what’s up with you guys?” This radiology oncology clinic treats all sorts of cancers, not just prostate, so I knew it might be any number of things.
She quickly gave me the bare bones of her husbands situation, which sounds like it’s gonna be no fun, but survivable, and I let her know I’m glad to be available to either or both of ’em to be “that guy” you talk it out with.
It’s such a privilege to be able to offer that unquestioning support. I find these days that the “connectedness” to my fellow humans has become one of the things I’ve come to value the most in this season of my life. So grateful when chances to live out that conviction present themselves.

Now here’s the other interesting thing: This is the same practice where I turned up every freaking morning for two months to get zapped with targeted external beam radiation 18 years ago. And when we were called back for our consult the Doctor looked at me for a minute or two and said “I know you!”
Yup. He swore up and down that, nearly two decades (and god nose how many patients later) he still remembered treating me. Of course, where I go in my head is that “must have been even more of a PITA than I realized” place. But I could see our quick exchange did a lot to boost the comfort and confidence of my friend and his wife, who are still in those early stages when the rational part of your brain is trying to settle down the emotional side, which is seriously freaked out.
So, nice piece of serendipity. Well played, Universe.

One final point about my membership in our huge Involuntary Club. I’m always interested when another New Member arrives at our clubhouse. Thus, I found this video that posted on the internet today of note. Perhaps you will as well.

And that’s about it from here for tonight. As you know, it is not my intention here to wallow in matters medical, but I reckon the occasional update for the interested is a reasonable use of the forum.

Cheers!
_________________
*For instance: I am, at the moment, in the midst of a persistent bout with vertigo. Now that’s something I have never experienced in my life, but which has presented itself several times over the last year or so for periods ranging from a couple hours to a day and a half or so. It’s not a big deal. I Googled a couple times ago when, for the first time, it lingered for more than 24 hours. The consensus from a number of mainstream medical sources was “not to worry — odds are, like 99% that it’s not significant. But the fact that I even bothered to look it up speaks to a level of concern that my body may be betraying me that I’ve never had before.

 

The Deal on the Thing — Part 1

EDITOR’S NOTE: What follows is a recycled mashup of a couple of Facebook posts published not long after my prostate cancer was rediagnosed as “advanced” and my prognosis adjusted to “inevitable” (not a technical term).

These are some things I know

[First published 22 July 2017]

*          *          *          *          *

Hello, friends. This is the public iteration of a memo that went out a week or so ago to a very limited list of friends and family members. If you already saw that, there’s really very little new here, other than a little more clarity on what I’m currently understanding to be the “next right thing(s)” for me to do.

If you did NOT see the earlier note, and you’re wondering why, since you and I are indeed pretty close, my apologies. In the initial rollout, I felt it necessary to, for a time, really hold this information in a small group while I went through some processing of my own. One of the toughest pieces for me in the initial exercise was making the calls about who I looped in when. But I think it’s time to “go public”.

To be clear: I’m not asking for anything here. I don’t need any advice, or anecdotes about what happened with Aunt Millie (bless her heart), or assurances of your “thoughts and prayers” (though, if it is your practice do have such conversations with your personal higher power, I certainly don’t object to having a good word put in on my behalf). But it’s been my custom for some time now to pretty much just lay my life out here. I know that’s weird for some folks, but it seems to work for me. And now, more than ever, doing what works for me seems like the way to go.

*          *          *          *          *

Down to business.

Depending on how closely you follow Facebook (and what determinations the algorithms have been making about what you should be seeing in your news feed), you may have noted me doing the Happy Dance earlier this month when the news came through that a series of scans (specifically bone, CT, and bone density) all came back clear and “normal” (yeah, I know). As most of you know, I’ve been living with prostate cancer for a number of years, and normal scans indicate there is no evidence the bastard has metastasized yet. So, yay.

I did have a phone consult with my oncologist a few days later to discuss those results. She began the conversation with “well, the good news is that all your scans look normal.” Now, I’ve been around long enough to know that when somebody’s opener is “the GOOD news is…” that a shoe is about to drop. And yup, there’s more.

Here’s the deal. After living with the beast inside me for 17 years, [edit: 18 years as of December 2017] I have now officially graduated to “advanced” classification. All right, what does that mean? At the moment, nothing except that we’re adding a new oral medication to my daily drug regime. One whose job it is to prevent any of my hormones – not just any residual testosterone the Lupron isn’t suppressing, but the other secondary hormones we all produce that are somewhere in the spectrum between testosterone and estrogen – to prevent those hormones from binding with the cancer cells (which promotes more rapid growth). Apparently, it does that job pretty well, but basically we’re retarding progress, not stopping it, and certainly not reversing anything.

So, the net result is that expectations are that the cancer should become metastatic within a year or so, likely moving into either my bones or lymph system. Once that occurs, and depending on how it presents, there are a handful of treatment options – various chemo approaches, possibly radium injections if it’s in the bones. None of those are “cures’, they’re a way to buy some time. And once we get there, we take a closer look at the options and the tradeoffs.

Again, let me emphasize that, at the moment, I’m in exactly the same position I was in a month ago – just taking one more pill in the morning. No big lifestyle changes in the offing. The only immediate potential shift will be whether the new hormone blocker creates significant side effects for me (most common are hot flashes and fatigue). Should know that within a few days.

But what’s true is that, after a remarkable SEVENTEEN YEAR RUN since I got my initial diagnosis and the news that surgery was not an option due to how advanced the cancer was when we found it, I now find myself at the head end of what appears to be a long, gently sloping offramp. From here, I can’t quite make out what the end of the ramp looks like, or just how far out it is. But the inescapable fact is that this is, indeed, my exit ramp.

I, of course, have complex and mixed feelings about this and one thing I’ve already learned over recent days is that getting clarity on what those feelings are, owning them all, but choosing which ones to feed and which not to nurture (without denying any of ‘em) is apparently going to continue for however much time is left to me.

But again, my life today is physically no different than it was a month ago and, in the words of my oncologist, “at this point we’re treating numbers, not tumors.”

What has shifted is the context. An end result which has always (well, for the last 17 years) been out there in the “eventually” category is now, while not immediate, in the room with me and demanding acknowledgment and attention.

As you might imagine, this reorders priorities somewhat. There’s really not much room now for postponing stuff until some vague “later”. If it’s important, it’s time to address it.

I have been encouraged by a couple of folks to look for some way to articulate things I know, things I’ve learned, things I’ve seen. I am seriously contemplating (not for too long, I trust) how to best do that.

Not sure just what that looks like yet – if you have thoughts about it PM me. I know I’m NOT interested in doing a “this is my life working my way through the endgame of cancer” blog or podcast. It’s already been done, and done well. More than once.

But I’m contemplating some sort of blog or blog/podcast combo. It’s not that I’m convinced I have some life-changing “wisdom for the ages” to share. But it is fair to say I’ve been fortunate to have enjoyed an unusually interesting life and if there’s some way to articulate and pass along some of the lessons I’ve picked up from that body of experience it seems a good use of my time.

[Note: This blog is the product of the above ruminations. The possibility exists that at some future point a good friend with some experience in that area may sweep some of this up, organize it, and create a book of some sort. We shall see – or you may at any rate.]

And that’s What I Know So Far.

 

You asked…

[First published 7 August 2017]

[Note: A couple weeks after I announced my graduation to the Advanced Class, and my trading in of my urologist for an oncologist, one of my dearest friends sent me a private message to inquire where I was at in processing the Big News. My response to her.]



“I mean, really how are you?”

Well, that’s the question, isn’t it?

Turns out the answer’s not as simple as I’d like it to be.

I’ve done my level best to be honest with myself over these last three weeks since the news dropped.

And I felt like I’ve done pretty well on the emotional and intellectual side. It’s a complex cascade of emotions, of course. That’s so nakedly obvious it would require a serious, consistent, life-long commitment to denial to miss it. I, from Day One, was committed to coming at this quite the opposite. Meet everything in the complex stew of reactions head on. Examine them directly and with clear eyes. Make conscious choices about what to feed, and what to acknowledge and set aside.

It’s a good plan. There’s a lot to do, and a dauntingly limited amount of time and resources to get it done. And that’s been the way I’ve elected to approach this season of life. I really have NO desire to piss away any more of my limited supplies than necessary curling up into a self-indulgent ball of fear and woe. What the hell does that serve?

But now, three weeks in, I’m beginning to find the flaws in execution. There are a number of them.

Ironically, one stumbling block is that physically things aren’t really a hell of a lot different than they were a month ago. Side effects from the new meds are minimal. I’ve noticed I’m drinking more water now, but that’s both trivial and something I’ve needed to do for a long time. My fatigue quotient may be a bit higher, but that’s so damned hard to quantify because I already don’t have near as much gas in the tank as I did for most of my life, for multiple reasons.

So with no obvious physical indicators that this beast is getting away from me, this becomes entirely a theoretical mental exercise. And there’s a pathway for self-sabotage (aided and abetted by people who love me) very available down that alleyway.

Why? In part because I’m inclined to default toward optimism. For many years now (I suspect, at least in part, due to having now spent more than half my life in recovery from alcoholism and addiction) I’ve been that guy who falls off the top of the Empire State Building and calls out to folks gazing out their windows on every floor “doing OK so far!” So there’s a temptation to normalize.

And that’s fed by dealing with family members who are not at all eager to let go and, despite the fact we’re all old enough to know better, have little inclination to stare death in the face.

One of the things about me is that I tend to “emotionally caretake” those I love. And I find that I love a lot of folks (a good thing). But it puts me on the dangerous edge of falling into people-pleasing. The problem with people pleasing is that you can lose yourself there.

So, I’ve got a spouse and partner who, despite some relationship difficulties that had reared their heads before this turn of events (and which we were, with professional help, working on when the medical grenade turned the status quo on its head) finds herself not wanting to examine too closely the prospect of making her way alone in the world after three and a half decades in a partnership. And I’ve got siblings who insist on holding on tight to the fact that we don’t have a date certain, so it’s all good, right? Plus a daughter and adult grandkid who have (with my encouragement) come to regard me as a reliable North Star in their lives and feel most unready to let go of that.

Now, as a people-pleaser I slip into reinforcing all those points of view without even realizing I’m doing it. And that undercuts my desire to focus clearly and walk through all this with eyes wide open. So I realized, when the question was asked, that I’ve begun the process of packing my reality in cotton batting, the easier to manage it for myself and those around me. And goddamn it I don’t want to do that! It cheapens the truth of it.

*          *          *          *          *

I’m also frustrated with myself that I’m not making more headway putting together some sort of blog/podcast project yet. One of the very first things I knew when the news came that my countdown clock is running was that I carry within me a unique body of experience and life lessons. I’ve enjoyed the opportunity to live an exceptionally interesting and informative life. I was “there for the party” far more often than most folks get to be, and I’ve absorbed some knowledge (I refuse to call it “wisdom”) along the way. And if I don’t manage some sort of brain dump download over the next while or so, I just take that with me when I go. I have no idea if it’s of possible use to anyone else, but it feels like I need to make the effort to make it available in case it is. I’ve got some random scraps of writing – portions of this can probably be recycled, for instance. But still no coherent vehicle.

*          *          *          *          *

I’ll just say it here: I’m freaked AF about the economics as well. Both our short-term shortfall (the apartment is without a tenant and has been a black hole we throw money into for repairs over the past month+, and we’re really missing the cash flow from that crap radio producer job I quit a few months back), and the long term planning for Yoshimi. We’ve been saving up for this Last Great Tour to Europe for well over a year now, and we have another year to go before our planned departure. And we’ve had to dip into the kitty this past month to “borrow from ourselves” for apartment repairs and living expenses. And beyond that, I have no idea what her budget looks like without me here keeping balls in the air.

We are going in to see our old friend Ed the Undertaker tomorrow to set up a “death insurance policy” that will cover the basic costs of burning my leftovers when the time comes, so that’s a positive step moneywise, and, not incidentally, another little milestone along the way of making all this real for Yoshimi. And goddamn it! I hate like hell putting her in this position. It damned near destroyed her when Jude died – that’s 17 years ago now, and his memory is still with her every day. At the best of times, her relationship with me has never run as deep as the ties between a single mother (which she was most of his childhood) and her only child. How could it? But for the past 34 years, I’ve been the one who was there to backstop her when the world tried to knock her down. I’m going to be both the instrument of her trauma AND unavailable to help her stand. That sucks.

*          *          *          *          *

And I would be remiss if I didn’t offer a nod to the cold nugget of fear in my gut. I’m determined not to be governed by it, but I can’t pretend it isn’t there. Everything I’ve said above is just all detail work around the edges of the central fact that we are discussing the End of Me. That’s daunting.

It’s the single constant of life for all humans. We die at the end. Sometimes the end is sooner, sometimes later. But that’s how it all turns out. We know this intellectually. Some of us live in fear of that Great Fact. We as a culture have a terribly dysfunctional structure built up around death. But that’s a different conversation.

This is distinctly personal. And relatively immediate, though not so much so that I’m spared plenty of time to contemplate it.

I know plenty of folks who enjoy some sort of faith tradition or belief narrative that brings them great comfort in contemplating their death — an emotional certitude about a post-termination existance. I don’t begrudge them that mindset at all. It beats the hell out of going kicking and screaming into those final moments.

But I have no such soothing expectation of “passing over”. I just don’t. I’ve tried on a few over the course of my life, but none truly seemed to fit me well. And it sure AF would be intellectually and existentially dishonest to grasp for some “late conversion” now in the interests of finding some reassurance. I’m not a vehement denier, either. Too uncertain to claim atheism as my home turf either. Just put it all down, for me, as a “known unknown.”

That’s who I am. Problem with it, though, is that logic dictates that however it plays out, the consciousness/ego construct I’m used to regarding as my “self” most probably ends when my run in this body (frustrating vehicle though it may be) is finished.

And frankly, I’ve gotten pretty used to being “me” over these last seven decades or so. The idea that final encores will be played, the system shut down, and loadout begun in the relatively near future is sobering, to say the least.

All right, Deb. I’ve taken sixteen hundred words now to say: “How am I really? Fuck if I know, but I truly appreciate you asking.” I honestly do.

 

Why we’re here.

 

Just what is it that we are embarking upon here, and why?

Well, as you may know, I was delivered the news a few months back that, after living with inoperable prostate cancer for the past 17 years, the bastard has finally grown impatient. My doctor expects metastasis within the year (which would, I imagine, likely mean sometime between now and the end of next summer) and, at that point, an educated guess says I’m good for another one to three years. If you’re interested in my initial reactions to that news, you’ll find the story here.
But the long and short of it is this: While the dark one who comes for us all one day may not yet be in the room with me, he IS in the building, and is in the process of making his way to my floor.

* * * * *

For a while, now, I’ve been fond of speaking of “seasons of life”. I find it an aesthetically pleasing metaphor, and useful in many ways.
But there’s another common trope that, I’m thinking, centers well on my situation these days. That’s the one where people speak of “chapters” – as in “leaving home for college turned the page to a new chapter in my life.”
If we belabor the model a little bit, we can look at each of our lives as a book on the shelf in the library of human existence. We all contain, or embody, a book. Some are thicker; some short but powerful. Some are more dramatic, others more practically helpful. But the library of human existence is full of books.
I’m pretty happy with mine. It’s been a hell of a read, with plenty of unexpected turns along the way. Mostly interesting, a lot of it fun. Some heartbreaking chapters as well.
But here’s the thing. Since I’ve been made privy to a rough estimate of the page count remaining, I realize I have the chance to do what, in many ways, is the most challenging part of the work for many writers. Can I make my book end well?
There are a few chapters left to get down here. And in many of the best books, one of the jobs those final chapters serve is to provide the chance to tie up the loose ends, sum up the arc of the story, and punch up an ending worthy of the pages that went before.
I think that’s a part of the task(s) I am about here. And it strikes me that it may also be why, despite a lifetime of speaking into microphones, and loving it, I’m drawn to do most of this in print, rather than in a podcast.