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.

 

“Living in the Spaces Between the Music”

Renée LeBallister dancing with Quicksilver Messenger Service (John Cipollina, guitar) at Frost Amphitheater, Stanford University. 26 March 1970 Photographer unknown.

Had the chance Sunday to sit over a long, leisurely coffee with an old and dear friend from my sweet youth. Renée LeBallister, known to many Bay Area concert goers in the late ’60s through the mid ’70s as “Renée the Dancer”, or even just “That Amazing Dancing Lady” was passing through, and made time to get together.

We covered a lot of ground over the course of a two and half hour visit, from the night a grumbling Bill Graham swept the stage for her before a Quicksilver Messenger Service set because Cipollina insisted “she dances or I don’t play” to what it meant for a little lost girl to find her chance to “live in the spaces between the music” and create a way to hold fast and reinvent herself.
I came to know her first when I worked for Chet Helms at his Family Dog venues. She enjoyed a slot on the Permanent Guest List, a unique phenomenon of all Chester’s events and facilities.
The common oral history about San Francisco’s music scene of that time is that Chet Helms “was a horrible businessman” while Graham was the guy who always knew how to make the bottom line run in the black. Which is true, as far as it goes, but doesn’t really tell the whole story.

There are reasons that underlay Bill Graham’s reputation as a tough taskmaster and master negotiator, many of them good and honorable, and I expect I’ll explore them in another post at some point. For now, suffice it to say we did indeed need someone like him to keep the collective ship afloat. And the music scene has held far less texture since his death. Or, as the Jefferson Airplane’s Paul Kantner is said to have observed in conversation outside Graham’s memorial service: “Bill was an asshole, but he was our asshole.”

Ultimately, Chet Helms never really saw himself as a “concert promoter” in the Graham mold. Chester (who was, by the way, a preacher’s kid) always was focused on evangelizing for the transformative possibilities we all believed  were inherent in the counter culture we were collectively engaged in inventing on the fly.
In that context, the Family Dog’s primary task was not to “entertain” or “put on a good show.” It was to provide the space, and the seed elements, to facilitate attendees/participants in creating an environment where unexpected, potentially spiritually uplifting, educational, and just plain ecstatic events might occur.
Chet relied on many tools to nurture that potential experience including immersive light shows, the best music he could book, what passed for state of the art audio systems in those days; all of it fostering an environment that strongly prioritized participation (especially dancing) over spectating.  Really any and every piece he could dream up and toss into the stew that was “a night with the Dog.”
Now this is where the Permanent Guest List comes into play. Because one of the factors that Chet had determined contributed greatly to fostering the  “vibe” he sought to create was seeding the crowd with folks who, in one way or another, added an element to the pageant (could be aural, visual, aromatic — any number of things). And he also looked for people who could function as catalyst, inspiring audience members to get more actively involved (for further reference, check any number of live Grateful Dead recordings in which Bob Weir implores: “Come on everybody, get up and dance. It won’t kill ya!”).

AC with Renée Berg (née: Leballister).
Aptos, CA 18 February 2018
Photo: Luther Berg

All of which, brings me back ’round to Renée. She fit the bill on both counts. Anyone who ever watched her on stage with The Dead, Quicksilver, or a number of other San Francisco bands will tell you, all these decades later, that they still recall her fluid and seamless connection with, and interpretation of, the music. Not to mention her trademark back bends that took  her to an almost horizontal position from the waist up, while continuing to dance and move gracefully in a manner that seemed to defy the laws of physics. It could be a hypnotic, almost other-worldly thing to witness.
And yet, simultaneously, Renée was also able to encourage mere mortals to move their bodies as well. Like many of the musicians of the time her goal, whether she was on stage with a band or down on the floor with the crowd, was to affirm and inspire participation. She got a hell of a lot of people on their feet who, objectively, were whole orders of magnitude less graceful than she but who, nevertheless, had a hell of a good time “shakin’ that thang.”

After we closed the Family Dog on the Great Highway, I worked for Chet’s old partner Bob Cohen, who had a semi-thriving live sound reinforcement business by then, renting PA rigs and crews to bands and clubs as needed through much of the ’70s.
But after a time, Bob grew frustrated when, on a couple live recording jobs, he couldn’t communicate between the truck and crew inside the venue due to the fact there wasn’t an intercom and headset system capable of overcoming the sound pressure levels of live rock concerts. So, trained engineer that he was, Cohen invented his own system because he needed it. It featured sealed headphones so the on-stage and front of house crews could hear, and a noise-canceling mic so our talk back transmissions would be intelligible to him in the recording truck.
That system eventually became the original ClearCom product and Bob soon found himself out of the sound business, keeping his workers busy assembling headsets for sale.*

That was my signal to move on, I transitioned to a series of jobs in clubs and supporting small to mid level bands on gigs. I continued to run into Renée  from time to time at events, but contact was sporadic.

Sometime around 1980 I moved down to Santa Cruz County and lost track of her completely, as I did many folks from my rock ‘n’ roll youth. It’s only been in the last decade or so, with the advent of Facebook, that I’ve reconnected with most friends, colleagues, and fellow cosmic warriors from those days.
And it was just a few years back that one of my dearest friends, still working and known in the circles where it matters as one of the best live sound guys in the Bay Area, told me Renée had relocated to Southern California and gave me her married name(!) so I could track her down.
Thus we got hooked up on The Facebook, did that quick two or three paragraph mini-biography private message thing that you do, and started following each other’s feeds. A couple years ago, she and Luther were passing through the area and stopped by for one of those somewhat stilted “getting to reknow you” visits.
But this trip up (they were in the area to support a daughter who is transferring from their local community college to Cal State Monterey Bay) we really had a chance to “set a spell,” comb back over our mutual inventories of bands, scenes, and and friends (living and dead), and compare notes about how each of us experienced that unique moment in space/time that was the San Francisco Music Scene in the Age of Hippie.

Looking back together from the vantage point of our current late season of life, with some understanding and perspective — and yes, some tender sympathy for those young, damaged kids who were trying to find themselves a better way — was a warm and mellow exercise.
At least for me, in light of my medical prospects, there’s a certain urgency to having these sort of conversations. But I think all of us in our age cohort, regardless of our health status or other factors, are pretty clear at this point that “leaving it for later” really means “it’s unlikely that’s actually going to happen.” We’ve all lost far too many people we love over the past five or ten years as the herd thins and we age out.

So it’s important for us to spend this time with each other when we can. Not just for nostalgia value, though that can certainly be pleasant enough at times. But to compare notes; to check each other’s  recollections; to share experiences and lessons learned.
Just one example: Much as it’s comfortable for me to self-identify as “a good ally,” supportive and always the guy who can be relied upon, it truly is stunning at times to realize the stuff I missed; just completely didn’t see, thanks to my unconscious privilege and sense of entitlement as a cis white male.
Listening to some of Renée’s tales of what she had to endure as a single woman making her way in the very male dominated and macho structure of the music scene of that time was a real education for me. The assumptions that were automatically made about who she was in that world, why she was there and what she ought to be willing to do to secure her place in it were, frankly, appalling.

Like so many of the “flower children,” Renée was working to shake off the scars and traumas of a difficult, abusive upbringing. And some of the coping skills that partially formed kid had come up with to find her place in the world were, ultimately, unhealthy and didn’t serve her well.
But she also had a remarkable talent, the motivation to develop it into a unique and beautiful performance art, and the grace, wit, and intelligence to learn to apply it, finding for herself room to live in the space between the music.
And all of us who saw her dance, danced with her, or had the privilege to share a little time found ourselves and our lives the richer for it.

It was such a delight to hang with you yesterday, Renée. I do hope the universe aligns such that we have the chance to do it again. And if not, I truly treasure the reconnection regardless.

___________
*After a few years, Cohen sold ClearCom to some corporate behemoth, netting enough money to ensure a life of comfortable retirement from that point forward. Sometimes, necessity is indeed a mother.

 

John Perry Barlow

Word came yesterday that John Perry Barlow’s run is finally complete; the last several years have been a damned rough road for him and, in that sense, I’m grateful to hear he was able to just lay his hammer down and let go in his sleep.

I’ve said a little, and reposted some things over on Facebook. And I’m certainly gratified to see some of the “younger folk,” who know Barlow primarily, if not exclusively, from his terribly important work with the Electronic Frontier Foundation (the internet ecosystem in which we function and thrive today would, in many ways, not exist without the vision and labor of JPB and his cyber-compadres) posting up on the Twitter machine and vowing to continue to carry the fight forward in his memory. Aside: I think that’s so terribly important now. My cohort and I are old, with some hard earned life lessons but without the energy it always has and always will require to carry the fight to the entrenched power.

John Perry Barlow “back when.” Date and photo credit unknown.

But I wanted to take a moment here to recall, and pass along some thoughts he shared a while back.
See, my history with Barlow dates back  to when we were both young and frisky, running wild in and around scenes involving a gang of colorful outlaws that was becoming known, even then, as The Dead Family. I was never a fully pledged member of that brotherhood; I had an instinct for preserving my options and independence that kept me from completely buying in, at any level. But it’s fair to say I had a cordial and respectful “peer to peer working relationship,” if we can even try to characterize stuff that was happening in the 1960s and ’70s with 21st Century terminology.

Whatever you choose to call it, I knew Barlow when we were both playing the role of free-range, hard riding, young blood “neo cowboys.” It was a period when a lot of interesting exploration occurred, fun things happened, dangerous territory was occupied, and mistakes were made.
Some of us have survived. Some didn’t. Most of us who remained learned a lesson or two — some of us more slowly than others.

So, all of this is by way of getting around to sharing with you something Barlow posted up a decade or so ago, when he turned 60. To clarify, the introductory remarks are from that vantage point. They set up a list of, as he characterized them, “Principles of Adult Behavior” that he had first drafted half a lifetime earlier, when he hit the then overly mysticised age of 30. Took me a hell of a lot longer to get my brain lined up with all this (I started out with some damned screwed up ideas about what life is about — had a lot of unlearning to do first in order to make room to get my head screwed on properly). But I am comfortable today saying this reasonably well encapsulates a great deal of what I know.

So long, Barlow. Happy trails, and fair winds.

FINALLY, A LITTLE GIFT FOR US ALL…

I didn’t think I would live to 30 either. I was shocked, shocked I
tell you, to find myself on the eve of my 30th birthday, weirdly
alive. In this, I was quite out of step with most of my friends to
that point, more than half of whom were already back in the sweet realm of infinity and love. Chickenshits. If you’re going to
volunteer in the first place, go right into the Special Forces.

In any event, it occurred to me that, past 30, I could no longer
defend my peccadillos on basis of youth. I would have to acquire some minimal sense of responsibility. While I didn’t want to be a grown-up, I wanted at least to act like one in the less toxic and stultifying sense of the term.

So, I sat down around 2 am on October 3, 1977 and I drew up this list of behavioral goals that I hoped might assist in this process. Now, thirty years later, I can claim some mixed success. Where I’ve failed, I’m still working on it. I give these to you so that you can provide me with encouragement in becoming the person I want to be.
And maybe, though they are very personally targeted, they may even be of some little guidance to you.

Anyway, this is what I wrote that night:

PRINCIPLES OF ADULT BEHAVIOR

1. Be patient. No matter what.
2. Don’t badmouth:
Assign responsibility, never blame.
Say nothing behind another’s back you’d be unwilling to say,
in exactly the same tone and language, to his face.
3. Never assume the motives of others are, to them, less noble
than yours are to you.
4. Expand your sense of the possible.
5. Don’t trouble yourself with matters you truly cannot change.
6. Expect no more of anyone than you yourself can deliver.
7. Tolerate ambiguity.
8. Laugh at yourself frequently.
9. Concern yourself with what is right rather than whom is right.
10. Never forget that, no matter how certain, you might be wrong.
11. Give up blood sports.
12. Remember that your life belongs to others as well. Do not
endanger it frivolously. And never endanger the life of another.
13. Never lie to anyone for any reason.
14. Learn the needs of those around you and respect them.
15. Avoid the pursuit of happiness. Seek to define your mission
and pursue that.
16. Reduce your use of the first personal pronoun.
17. Praise at least as often as you disparage.
18. Never let your errors pass without admission.
19. Become less suspicious of joy.
20. Understand humility.
21. Forgive.
22. Foster dignity.
23. Live memorably.
24. Love yourself.
25. Endure.

I don’t expect the perfect attainment of these principles. However, I post them as a standard for my conduct as an adult. Should any of my friends or colleagues catch me violating any one of them, bust me.

John
Perry Barlow

October 3, 1977

Hold me to these please.

And thank you so much for all the love you’ve given me, despite all of my efforts to resist it.

May the Good Light shine on you,

The Ancient Barlow


**************************************************************
John Perry Barlow, Peripheral Visionary
Co-Founder & Vice Chairman, Electronic Frontier Foundation
Berkman Fellow, Harvard Law School