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“When you come to a fork in the road take it.” —Yogi Berra

So, we seem to have arrived. At the next fork in my road. Let me explain.

Most of you know I’ve been living with cancer for the better part of the past two decades, and have reached the point it’s going to take me out sooner, not later. That, in part was the impetus for launching this blog.

Not meant to be a long, heart-tugging, “this is my journey through cancer until the end” project. That’s been done. By better reporters than I. More than once. No, this exists as my shot at downloading whatever experience and wisdom I may have gleaned through the life I have been privileged to enjoy. A life, in my modest estimation, that has been more scenic than many folks get a shot at.

But to the point of this update. This is a bit of a medical bulletin, because the ground has shifted. First, some context for those who need it. This will all be old news to many readers. If you’d like, you can skip past these paragraphs of back story and jump to the news of the day here.

If you have been following along in your books, you’ll perhaps recall that back in the summer of ’17 I got the news that the prostate cancer I’ve been living with for damned near 20 years was on the move again, and I was being graduated to the Big Boys Table.

Due to the doubling rate of my PSA numbers (tech talk for the blood work that gives the medicos a clue about the level of activity and aggression of prostate cancer cell mutations in the male body), Kaiser health care removed me from the care of the urologist who’d been administering my care the past several years since the cancer woke up again. classified me as Stage Four, and assigned me to an oncologist.

She ordered a series of full body scans to get a sense of where we were at, and in our initial meeting, laid out my “new normal.”

In July or August of last year:

  • There was no evidence of cancer developing at “remote sites.” In other words, we couldn’t see any spread of the disease yet.
  • She adjusted my medication profile, adding a second hormone suppressant drug (seems that hormones, especially testosterone, are freakin’ Happy Meals for prostate cancer cells) which, she explained, “works well for some folks, and not at all for others.”
  • The bad news (other than some nagging, but not quality of life destroying side effects) was that, if it did prove effective for me it would eventually stop working.
  • She also explained that, though each case is unique, she would expect metastasis in 12 to 18 months. [Note: Some time later, as I appeared to be responding well to my new med, she recast that projection to 18 to 24 months.]
  • Once the cancer cells—clever little fellows that they are—mutated themselves enough to overcome the lack of hormones in my body and began rapidly replicating, the most likely avenues for their spread would be into my bones or lymph system. Sometimes other internal organs become involved (the most difficult treatment challenge), but the first two are more common.
  • When the cancer begins to present deeper into my body, there would be further escalation of treatment options to discuss, with the caveat that all those would be about buying some time. We aren’t looking at “curing” anything here.

OK. For any who needed ’em, those are the nuts and bolts of context here.

If you follow me on Facebook, you’re likely aware I spent most of last Friday in the tender hands of a succession of Kaiser Permanente techs in San Jose for nose to toes CT and bone scans.

I wasn’t terribly concerned. Best I can tell, my overall physical condition hasn’t changed radically recently. Oh, I’m tired a lot, but that’s a listed side effect of one of my meds, and besides I’m old.

Chronic aches and pains all over the place, but see above.

And, based on the performance of my PSA numbers, this seemed to be more of a “routine check to be sure we’re not missing anything” than an “uh-oh, we better take a closer look at see what the hell this is about” test order.

Right. Quit noodling and dive in, Ace.
Finally got the update phone call from Dr. Jhatakia last night. As she put it, “it isn’t great news, but it’s not drastic news either.” Which, in today’s world, is a pretty good day.

The deal is this:
The scans are showing a “small lesion” (about 0.8 cm) on my left pelvic bone. It’s new. Wasn’t there in the last scans. Which would seem to indicate the cancer has established a toehold in my bones (bad news) but is not very far advanced yet (good news). Other than that, no indication of other weirdness. Lymph system, internal organs, and the rest of my skeletal structure show no signs of being compromised at this point (yay!).

Thus, pretty much right on schedule, we have the first indications of metastasis.
We have some different treatment approaches to consider now and, given the early days of the spread, the luxury of taking a little time to make our decisions.

We can stick with the current course of treatment; with the periodic Lupron injections and daily oral dose of bicalutamide (Casodex®). As the doc finished outlining the scan results I, jumping ahead as I am wont to do sometimes, tossed this one out with a casual “so, we hold course and watch and wait?”
Her response was a less-than-enthusiastic “weeeell, we could do that, and take another set of scans in four months to see where we are.”

She also tossed two additional options on the table. Each has its own positives and negatives. Both involve continuing the Lupron injections, and replacing the bicalutamide daily oral does with another, related, therapy. I’ve got some research to do, but here’s a rough recap of what the oncologist told me.

The first option is enzalutamide (Xtandi®).  Side effects on this guy are similar to the ones I’ve been dealing with from the bicalutamide (fatigue, bone and muscle aches, fluid retention) with a couple of unpleasant “added attractions.” Apparently it can cause some cognitive impairment (oh, swell!) so it’s recommended that it be taken at bedtime—because, I guess, who needs cognition when they’re sleeping?
Oh. Almost forgot. In about one percent of patients, the drug can spark seizures. Obviously, an outcome I’d like to avoid.
The other unpleasant side effect from this guy is cost. Apparently, even on Medicare we’re looking at several grand a year. Gulp.
She did indicate our income may be low enough for us to qualify for something called Medical Financial Assistance. I’m unclear if this is a Kaiser-Permanente program, something sponsored by the drug company, or a government benefit of some sort. But if we can get it, boom! No copay. She’s going to have staff mail me some paperwork.

The other possibility she raises is a drug called abiraterone (Zytiga®), another second-line treatment for men who’s cancer has become resistant to androgen (hormone) therapy. But (of course—aren’t there always?) there are “issues” here as well.
Perhaps most important, in my case, is that it needs to be administered in tandem with prednisone, a steroid with its own unhappy symphony of side effects. Probably most significant for me would be weakening of the bones (increasing risk of fractures) and the fact it often plays havoc with blood sugar—not a good thing for diabetics.

So, dem is Da Fax, Ma’am. As you can see, there are going to be some high stakes decisions to make over the next few weeks. It’s worth noting, I suppose, that all paths ahead ultimately lead to the destination. And it appears I have still have a bit more of a hike before I arrive there.

But this most surely was the next significant milestone on the journey. We knew this next turn was coming up, and here it is.
I, of course, “have some feels” about the news of my new normal, in addition to some decisions to make. I won’t be digging into them here because (a) that deserves an essay all its own and (b) frankly, I’m not sure what they are yet.

Think of me today as that little beach ball that spins round and round on your screen when you’re machine is trying to load something or open an complex file.

Forward!

Thanksgiving 2018: Reflections

[A note to my international friends: For you, today is Thursday (unless it’s already Friday where you are), an ordinary week day. Here in the United States, today is the designated national holiday known as “Thanksgiving”. Thank you for your patience.]

For many of my Native American and First Nations friends, the fourth Thursday in November is observed as a day to remember the dark legacy of colonialism, conquest, subjugation and genocide that lies across the face of this continent.

Aside: If you’re not as familiar with the actual origin story of our modern Thanksgiving customs, won’t you join me over here for a quick review? Go ahead. I’ll wait here.

OK, we’re back.

Those of you who gathered at dawn today on Alcatraz, or elsewhere, to honor ancestors, build solidarity, support each other, and find renewed strength, I acknowledge you with respect and love. I also acknowledge the almost certain fact that some of my ancestors were at least complicit, if not active participants in some of that sad legacy. I wish it were not so, but it is. I can only do my best to be better.

My privilege though, has brought me to this moment by a different path, thus my practices on this day are different as well.

One last thought though, before I move on from this part of discussion the day. As a sympathetic observer, and one who has aspired to be a good “ally” since long before the term was coined, I’d like to note that I’ve seen an evolution in the tone, tenor, and presentation of Indian activism in recent years and, to my eyes, that represents positive development in several ways.

I’ve been around since the days of the Alcatraz Occupation, and before. It has been my privilege to watch, at least in the Bay Area, the birth and early coalescing of the Red Power movement. In later decades, it seemed the focus turned more inward, with an emphasis on the urgent work of relearning language, core cultural activities, and spiritual/religious practices before they were lost forever as elders, often the last holders of these memories, left this life.

And along with that work came the task of developing alliances and interconnection between Nations who may have, at times not always seen each other as friends.

Now, in researching this piece on line, I’ve come to realize that the impatient young people with their urgency and sense that they were often, quite literally, fighting for their lives have become today’s elders. And there is a new generation of leaders emerging with the heart and skills to take the movement to the next level, and present it in the context of today’s media environment in a fashion that strives to address continuing issues of oppression while leveraging a new type of academic interest in tribal history, an ingrained understanding of the peril to human survival the excesses of the dominant culture have created, and a level of dignity, pride, and self-worth which had been almost drained away from earlier generations by over a century of systematic oppression, exploitation, and cultural colonialism.

Today’s emerging leaders begin their work from a place much further along than that which was available to their parents and grandparents. Thus we can hope the work of their lives will have impacts we can’t even foresee from here.

All of which is by way of acknowledging the fact that, for certain folks, this day is informally known as Unthanksgiving, and the last thing they have in mind is gathering around a dinner table to eat overcooked poultry in commemoration of what, in many ways, was no more and no less than the time-released invasion, theft and, in many respects, destruction of their land by a hostile and aggressive foreign horde. I honor and respect that, and would not be so arrogant as to offer counsel on whether that best serves. I can’t know what I don’t know.

By accident of birth, however, my experience is different.


Like many Americans, I grew up spoon fed the post-war idealization of “the good life” which included an expectation of warm and fuzzy gathering of loving family to give thanks for our privilege and bounty. And this was somehow all wrapped up in a blanket of patriotism, entitlement, and expectation of the manifestation of some fictional, misty, satisfied gathering rooted in a shared appreciation of fine home cookin’ (somehow magically manifested in the kitchen by the womenfolk while the men did manly things like watch football and chat about plans and expectations for the upcoming holiday season).

Of course, like so many of my generation, things never quite played out that way in our alcohol soaked home. Bonnie (wife and mother) was not a terribly talented “natural-born cook” at the best of times; for her the work was all about finding recipes that either looked good, or appeared to match someone’s fond childhood recollections, and trying to follow them to the letter with regard to ingredients, timing, and presentation.

Not the most relaxed way to approach the kitchen under any circumstances, and when overlain with the crushing weight of holiday expectations (and recreational alcohol consumption that began earlier and ran heavier than it did on “normal” days) the ballet of timing multiple dishes to reach their prime simultaneously, her stress level and performance anxiety would rise exponentially. Which virtually guaranteed an unfortunate outcome.

I’m coming the long way ’round here to get to: I don’t have terribly fond memories of Holiday Feasting from my childhood. And thus, I’ve felt no compunction to try to duplicate those painful afternoons and evenings in my adult life. Imagine my delight when I discovered I had managed to join up with a life partner of similar bent.

However it has also been true for quite a long time that my feeling of connectedness with fellow humans, and the nexus of love we share, is central to how I understand myself and my proper place in the world; in my life.

Thus, over the years, Yoshimi and I have found ourselves establishing a “family tradition” of a different sort, around this holiday in particular.

Neither of us adhere to a formal faith tradition, so we’re not committed to any of the various celebrations of various deities that dot the calendar (I saw an assertion somewhere the other day that December and January actually contain a grand total of at least 52 different observances focused on different reputed “birthdays,” holy days, or astronomical events such as solstice—so much for your “War on Christmas).

So, a day that’s set aside to gather with loved ones (we like to think of them as our “family of choice,” thus differentiated from our “family of origin”—though there certainly is overlap) to contemplate and celebrate the many, many things for which we are grateful emerged as the natural holiday for us.

Over the years, we have mounted gatherings with as many as a couple dozen people; as we have aged the effort grew more daunting, and many of the folks who had previously filled seats at the table moved on to other commitments. But there is always “Thanksgiving with Ace and Yoshimi” as a known thing.

This year, circumstances have lead to a further evolution. Not sure I’m completely happy about it, but it is what it is and I embrace it. In getting ready to put these thoughts together, I went back, as best as the architecture of the site allows, and retrieved some things I’ve written for Facebook in previous years.

I found this “day after” rumination from last year, and thought it worth revisiting here. I’ll explain why on the other side.


FRIDAY, NOVEMBER 24, 2017
Notes from the wreckage:
~ I realize we say this every year, but I believe this truly was, in many ways, our finest holiday gathering ever.
~ As always, I look forward warmly to a succession of comfort meal favorites on the menu in coming days. Hot turkey sandwiches with gravy. Turkey soup. Ham and scalloped potatoes. (Side note: Christ, there’s a lot of left over mashed potatoes this year for some reason. Recipes incorporating same glady accepted.)
~ I thought my “no politics today” rule worked out reasonably well as a tool for setting our anxieties aside for the day. And who came closest to violating it as the evening wore on? Yup. Moi.
~ I’m not sure what possessed Yoshimi to elect to bring out the Good China and crystal glassware for the first time in a number of years but, even though it meant more handwashing after, it was a nice, luxuriant touch, and I’m glad we did it.
~ Good mix of old friends and new this year. That was a joy. And thanks, by the way, to everyone who pitched in side dishes for the feasting. Damn, but we do get to live well.
~ It is so VERY much worth it, but I gotta admit there’s a lot of physical work involved in mounting this kind of feast, especially for us old farts. Man, I’m beat up this morning (and “ma in her kerchief” is still sleeping soundly). I wouldn’t have missed it for the world, but I do have to own the costs. Which leads me, finally, to…
~Damn, but I’m grateful I don’t drink any more. It struck me a little bit ago as I stumbled through brewing the cats and feeding the coffee that I’m pretty sure if I laid a hangover in on top of this I’d be praying for a swift and merciful death about now.
Happy Day After, all. If you’re going out among ’em (or, gods love ya, if you have to work retail) today, be careful out there.

I had no idea when I wrote that, that 2017 would be the final year we hosted Thanksgiving Dinner in our home of 16 years.

But, for a number of reasons, it’s time to move on from here. We’ll be setting up housekeeping in a new location in January. Initially, we considered “one last farewell feast” here. This home has meant a lot. I’ve realized as we’ve contemplated and planned this transition, that I have lived here longer than any other place in my life. And the same is true for Yoshimi. Ultimately though, it just felt too overwhelming to take that route.

Once again though, we are drenched in gifts beyond all deserving. A dear friend has invited us to combine our dinner with hers. We’re sharing the cooking, and an abbreviated guest list. Yoshimi and I have done significant pre-baking here (our friend is wrangling side dishes) and we will load up the turkey, the dressing, and the ham in a few minutes and head over there. It will, I am sure, be a different but still filling (in so many ways) afternoon.

Know that, as always, I carry you in my heart and you’ll be right next to me at the table.

Wherever you are, and whatever your dance card features this day, you are wrapped in Love. And ultimately, I am convinced to my core, this is all about the Love.

Got Those Monday Blues

I expect it was inevitable at some point.

And today was the day.

Woke up this morning immersed in fear.

Not your run-of-the-mill sort of fear; the kind we all get that kinda sounds like “oh, I don’t think this ends well,” or “I think I really screwed this up.”

But way down to your bones Scared AF fear.

I think I’ve broken through and am confronting the inevitability of my situation on a whole new level. However, as we so often do, I’m investing the fear not in what I know, but what I don’t know.

It’s not the going over the edge into the abyss so much that has me freaked. Nor even the prospect of standing at the edge and looking into that abyss.

It’s the anticipation of being dragged over the rocks on the way to that edge that has me trying to climb out of my skin.

So much is unclear about just how this is going to play out. Where the cancer elected to set up camp once it metastasizes. How much pain that brings; how physically or mentally debilitated I’ll be. What the chemo options might look like, and whether they’ll seem worth the fight.

And yet this is all, ALL of it, just stuff I’m making up in my head at this point. We’re not there yet. Today is today. There is much important work to be done, that I can still do.

I know that this mindset is a trap of my own devising, and I need to make the decision, take the action, to step away from it and get on with the tasks of the day.

And I shall, given another cuppa or two and some space to recenter myself. This is the first time though since I was upgraded to Stage 4 that I woke up like this. And it seemed like I ought to memorialize it.

I’ve been pretty clear all along with everyone about my general feelings about all this. I have enjoyed a remarkable run, and I am grateful for it. As I like to say, I’ve been “playing with house money” for quite a while now.

And, somewhat to my surprise, I’ve also found myself to be deeply grateful for the “advance notice” of my pending offramp. My entire life, my baseline assumption was always “I hope I just get hit by a bus one day, so I don’t have to put any thought into what end of life means.”

But, in the event, it turns out I actually have found this interim period to be extremely useful. Not in terms of “delaying the inevitable,” rather that it’s providing me room for reflection, some opportunities to savor, a chance to do what I can to clean up things I’m responsible for and position myself to end my run as gracefully as possible. And how lucky am I to get that chance? Very lucky indeed, I’d say.

And yet; and yet. I woke up this morning immersed in fear. Deep, to the bone fear about how the rest of this plays out. That in the face of how terribly fortunate I have been to date. Not least in that I know, to the depths of my core, that I love and am loved (not by all, but by more than a few—and all out of scale to anything earned or deserved).

So there it is. It’s an authentic feeling. I hereby mark it, own it, and choose to get on with the tasks of the day.

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.

 

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