Life Off World

Author Amy Ferris frequently posts personal ruminations in her Facebook account which touch my heart, and encourage me.

But Monday morning I woke up to one that felt exceptionally personal for me. I started to type a comment, but soon realized my post was growing far too long for a comment thread.

So, I switched gears, planning to repost her anecdote on my Facebook page, with a longish introduction.

Before too long though, as the words kept tumbling out, that ceased to be an option as well.

And thus, here I am. Dusting off this long underused blog site so I can unlimber all I have to say.

With Amy’s permission, let me begin by sharing her original post here. I’ll move on to my response down on the other side.

A lovely FB memory:

It started with a favor: could I drive him to the oncologist, he has a check-up, it’ll only be a half-hour at most, he asked.

Sure, I said, sure.

He is someone I have known for 26 years; a friend who I see at parties and dinner’s at his house or smaller dinner’s and smaller parties at other houses, and well, you can know someone 26 years and never have time alone with them.

We sat in my car for 45 minutes, on the way to the cancer center; me in the driver’s seat, he in the passenger seat and we caught up and got to know each other better.

So much I didn’t know.
So much I now know.
So much more I hope to know.

The waiting room was full of people. Old & young.
Women & men & children.
Folks who were just beginning treatment, folks who were in the midst of treatment, folks who had recurrences – young & old and white & black & brown and gay & straight and the nurse came out and asked for Amy and I raised my hand, and she told me that my friend needed an infusion, and would I mind waiting, because this kinda thing can take an hour or two or… of course, I said, of course I’ll wait for him, yes, tell him that, yes, sure. I’ll be right here when he comes out.

And I caught up on magazines that I no longer buy. People and Us and a slew of magazines I had no idea existed and the thing I noticed, that rocked me to my core, when I looked up from reading about famous people who I knew nothing about and now know so much about, the thing I noticed was how kind everyone was. Kind and generous and maybe it was a cupful, and maybe it was just a spoonful and maybe it was a teeny bit but kindness has hope in it – kindness is hope – and… here, sit here, she said as she stood up from her chair to offer it to a man with a walker who was looking for a place to sit, and the smile and the kiss that was returned when a man brought his wife or his girlfriend – someone he was sleeping with – a cup of water and the little girl whose hair was growing back and the older boy who gave her a thumbs up and the small frail woman who I know was younger than me but looked so much like my mother and… every fucking time I am sitting in a waiting room, which is so very often these days I feel like it is me who is waiting for a moment or two or three that brings humanity back to my life; restores it, offering up hope.

It is me who is waiting.

It happened at the coffee machine.

For the life of me I couldn’t get the machine to make cappuccino, and unlike the waiting room at Subaru or iKen’s surgeon’s office or other doctor’s offices, this machine was odd and strange and unfamiliar and twice I tried, twice, and… no foam, none, and it isn’t cappuccino without foam, it’s just plain fucking coffee and I huffed and I puffed and I was about to try one more time when … can I help, she asked. Can I help you? Maybe she was 15, maybe 16 years old. Maybe. Tall and lanky and pale as a ghost with braces on her teeth and yes, yes, you can help me, I said. Thank you so much. It’s my pleasure. And she made me a cappuccino and told me that the cup was hot, really really hot be careful, she said, and I thought my God… my God… here in this room filled with folks who have no idea how long they have, no idea how much time… this girl, this girl with braces and cancer gave me some of her time and I had no idea, none, when I honked the horn this morning to pick up my friend of 26 years who I now know a bit better than I did yesterday because in a car you can choose to be emotionally intimate in a way you can’t be with music blaring and people talking over each other and I had no idea, none what so ever, when I said yes that I was saying yes to something more than a favor, I said yes to hope.

We mustn’t lose hope.

Thank you, Amy.
Thank you for seeing us.

Not many folks who don’t belong to the Kancer Kidz Klub really can.

Oh, a lot of ’em care. And they try, they really do.
But they just don’t, maybe can’t, “get” us.

Cos we don’t live in the same world as you any more.
Oh, we’re not far away. Just over here.

Our world looks a lot like yours.
We do, or try to do, a lot of the same stuff you do—that we used to do.
But it’s different here. And if you don’t live here, you don’t know.

No, we aren’t all waiting to die.

Some of us are. And that’s okay. I mean, all humans do die, sooner or later. It’s just that some of us here have that official notice that our stop is coming up soon and we should gather our stuff.

But some of us are holding hope, and fighting like motherfuckers to get back over there to the old home world where you all are.

Oh, there’s a lot of stuff we have in common. Much of it wouldn’t sound unfamiliar to other folks back there who are dealing with aging, other debilitating diseases (be they exotic or commonplace), et cetera. Many folks back in the Home World also get the chance to experience extreme fatigue, random severe pain, our senses of taste, smell, sometimes others not working right.

There’s another thing all of us in the Klub have in common (and this kinda ties in with your experience when you gave you friend a ride to his appointment).

Waiting. We do a shit ton of waiting. Waiting to see the oncologist who is running behind because an earlier patient had a crisis. Waiting to see how the new bloodwork or scans came out. Waiting for the biopsy results. Waiting for the fucking infusion to be done. Waiting to see if they think they “got it all” after a surgery. Just a lot of waiting. And that can be extra frustrating if you’ve already been advised you’re on a short clock.

Oh, frustration. Shall we talk about feelings?

Yeah, frustration is one that’s always on offer.
Plenty of chances to feel frustrated; impatient.
Of course, those are terrific “opportunities for learning.” Because it is quickly apparent that setting up camp in that negativity isn’t going to accomplish fuck all. And it’s a toxic place to live. Not a good choice.
There’s already so much inescapable toxicity (one of the odd quirks of cancer treatment is that one of the basic principles seems to involve a delicate dance of slowly poisoning the patience within an inch of their lives in the hopes the cancer cells die off before the host body) that voluntarily choosing more pretty much doesn’t pencil out when you look at the cost – benefit balance.

What are some other pretty common feelings? Well, there’s hope (and I know that’s one that you’re fond of, Amy). A cancer diagnosis is certainly not always and inescapably terminal any more.

(Though it certainly CAN be – if there is any sort of “early detection” procedure you’ve been putting off because it seems yucky, or it might hurt, or there’s a copay. Stop. Just stop. Go make the fucking appointment. Get it done. We don’t WANT you over here in Kancer World if that can possibly be avoided.)

But I was talking about hope. There are certainly a lot of us in the Kancer Kids Klub who have been given to understand there’s every reason to expect we’ll come out the other side after a somewhat bumpy detour over here on the bad roads of Kancer World. And the dominant feelings for those Klub Members are pretty much hope and determination. Those folks step up, pull on their Fuck Cancer tee shirts and (for many) knit beanies over their newly hairless noggins and quite literally engage in daily battle. So they are feisty, determined and driven by hope. And the rest of us hold hope with them. They carry the torch for us all.

Confusion. There’s often a feeling of confusion; overwhelm. Especially for the newly diagnosed. Such a mass of complex, often technical information to take on board (along with well-meaning but useless input from friends who just feel compelled to tell you about their Aunt Ida who confounded her doctors after she went off to a private clinic in Minnesota and spent six months on a specially tailored diet of blender drinks made with 17 herbs known only to shamans in the ancient Celtic tradition and a secret blend of raw vegetables). So much to take on board at exactly that moment when your mind is still reeling from the emotional shock of hearing the “C-Word” and struggling to take in ANYTHING. Meanwhile, we’ve got to get up to speed on all this, because it’s going to be necessary for us to be the lead dogs in taking responsibility for our own medical advocacy.

I could continue, but I’m wearing myself out just typing all this. There is one other emotion that touches each of us. Some may admit it; articulate it more readily that others. But it touches all of us from time to time.

Fear. Any Kancer Kid who insists they are not visited at least by moments of fear and doubt is lying. Either to you or to themselves. Of course. It’s fucking scary over here in Kancer World. So many unknowns. Existentially unknown. And we in the Klub are well acquainted with our personal mortality. It’s up in our face 24/7.

So yes, Amy. What you noticed (careful noticer of things that you are) is dead on. We are all unique persons, and express ourselves as such. But if I was to generalize, I would offer this.

First, regardless of prognosis, being handed a cancer diagnosis does have a clarifying effect on one’s priorities. Seems that a lot of humans spend much of our lives pouring energy into things which, when you get right down to the bone, don’t really matter much. So, many of us find ourselves shifting our focus and reconsidering, given that our time in life is limited, just what we believe is important.

Also, I believe these common experiences have a tendency to tenderize the those of us in the Kancer Klub. This may manifest in different ways, but a lot of it seems to show up around how we take care of each other. Not so much the sweeping, magnificent gestures. But those little things. Being aware of who may need the seat worse (and, when that’s you, accepting the proffered courtesy and support with grace and gratitude—with respect for where it’s coming from); giving a stranger a hand with a balky vending machine; inviting that person juggling a dozen eggs, a half-gallon of milk, and a fussy child to go on ahead of you in the supermarket checkout line.

Sure, there are lots of folks who don’t live in Kancer World who go through their lives this way, and bless ‘em. The world needs more tender hearts. Badly.

But, I dunno. Members of the Klub, regardless of their politics, religious beliefs (or absence of), economic status, or cultural background just seem to have a baseline empathy quotient that’s a wee bit higher.

I don’t mean to suggest that “all us Kancer Kids are SPECIAL.” That’s a little self-centered, even for this old boomer.

I guess what I’m saying is that while we appear to be living right next to you, and be dealing with the same joys and challenges, there’s this thing that rather sets us aside just a degree or two. Most “regular folk” don’t even notice it and, if they do, even fewer know what to do with it; how to deal with us.

And you know? That’s really okay too.

Not just because, well, it has to be. But because, even though I live over here in Kancer World now (and, in my case, will apparently be living here until the day that Dark Bastard comes for me), like all of us, I originated on that same Home World as all you guys.

And in my younger years, I wasn’t really comfortable moving among the dead and dying either. With time, I like to think I got better, able to be there with a bit more ease and grace. But I do remember how hard it was; how clumsy I was at it.

And thus it’s such a treat—so validating—to feel like someone from the Home World; someone like the talented Amy Ferris (who has had, and has, her own mountains to climb and storms to weather) sees us. I mean, really SEES us.

So thank you for that.


A couple of notes before I go.

  • If you’re not familiar with her, Amy Ferris is not only an exceptional (and successful) screenwriter and novelist. She also devotes a lot of time and energy these days to encouraging others, especially women, to find their voices and share their stories.
    You can find her Amazon page for more.
    She’s also on social media. There is a Twitter account,  but she’s most active on Facebook. She uses that account almost like a mini-blog. It’s where I found the post that generated this response from me.
  • There is a small, private group on Facebook expressly to offer folks who have a cancer diagnosis a spot where we can talk strictly among ourselves about whatever we need, be it a request for experience and support, a need to vent with others also living in our strange land without worrying about rattling the civilians. No friends, loved ones, or caregivers. Just a few of us. It’s called The Kancer Kidz Koffee Klub and if you qualify by virtue of currently doing the Kancer Dance or having been a patient previously who has graduated you’re welcome to stop by and check us out.
  • Finally, it occurs to me that some of my remarks may have suggested a lack of respect for those we depend on for support. If so I apologize, for that is not my message. Almost without exception, my experience has been that all these folks are damned living saints. And a special word for the health care professionals who elect to work in oncology. There are a hell of a lot of jobs in medicine and care which demand a special balance of commitment, knowledge, and professionalism. But I am surprised and my heart is touched over and over by those special among special people who deal with us Kancer Kids.

Test of Conscience

Word began to break on Thursday afternoon, with news that Hope Hicks, a close member of Trump’s inner circle, was positive for The ‘Rona. There have been other ‘near misses’ before—Herman (“Aww, shucky-ducky”) Cain comes to mind. But Hicks was close enough to know what everybody had for breakfast. So many among us began to speculate (with and without a licentious twist, depending on our personal inclinations).

And thus, when word came a little after ten Thursday night, Pacific time, I don’t think anyone was deeply surprised. For some (okay, many) of us, there was a certain schadenfreude at the prospect of this brutal bastard finally seeing some of it come home to roost. That night, the words from Orson Welles’ narrator in “The Magnificent Ambersons” kept running through my mind. “George Amberson Minafer had got his comeuppance. He got it three times filled, and running over.”

But I truly do want to “be the better man.” I want to practice love and kindness. I want to lead with an open heart. So I went to bed, knowing I was about to have my best night’s sleep in many months, holding the intention that I would rise to the moment on the morrow.

Well, I rose to the kittens instead. I took care of them, and got down to work pulling the pieces together for Jerilyn’s memorial celebration this Sunday. Every time I’d pause and raise me head up looking for updates, that delight would NOT be denied.

More of his henchmen testing positive? Hey, you people chose to hitch your wagons to this bull, now enjoy your ride. He’s running a fever? Well, he’s not going to get away with being asymptomatic so he can brag about “beating the ‘fake virus.’” They’re airlifting him to Walter Reed? Yes, I admit. I did watch ghoulishly to see if he’d make it to the chopper under his own power.

Now, all of this is kinda disturbing to me. What keeps crossing my mind is that Lennie James character from back when I still watched “The Walking Dead.” The poor bastard who had been so immersed in slaughter and mayhem, and the loss of all those he loved, that he had committed himself to adopting the aikido philosophy that “all life is precious.”

And I kept chiding myself. “If all life is precious, how can you continue to delight in his illness?” I truly was a little disappointed in myself.

Until I remembered a codicil I developed a long time ago that is supposed to ride alongside my commitment to doing my best to foster and nurture love among us all.

There is a point at which some people, by their actions and attitudes, elect to remove themselves from that circle of love and connection I strive to live in service to advancing. And after they declare themselves apart from it, I no longer owe them my kindness and service.

A sad spot in my heart, perhaps. Something akin to pity, for it must be a dark and lonely way to live. But they are beyond my reach. And they do often manage to hurt those who are within my circle of love and compassion. And my desire to love and harmonize does not obligate me to tolerate the intolerable.

So no, I won’t spend my time obsessing about every moment of his illness and treatment, actively wishing for his discomfort and ultimate demise. Because that costs me too much. Brings too much darkness into my heart.

But you know? I will not deny my truth. The fucker is the worst President in the checkered history of our Republic, and has done lasting damage to it. He is a selfish, self-aggrandizing, profiteering and petty man who is undeserving of my respect, loyalty, or compassion. May he get all he deserves.

As Advertised

“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.


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.

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.

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.

*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.