This list is obviously not comprehensive, and may well change in the days and weeks ahead. I encourage you to check back for updates.
If you are aware of additional sites you believe should be included, please shoot me an email at firstname.lastname@example.org. It will be helpful if you can provide links and a brief note about why it should be considered for inclusion.
About Sharing: Please DO feel free to pass this along. It would be best if you link back to this post so that folks you share it with can keep up with revisions and updates.
World Central Kitchen is on the ground on Maui and the Big Island, coordinating with local food organizations to provide meals, ice, and other support to firefighters and displaced people. They have a 100% rating from Charity Navigator.
Catholic Charities Hawai’i also gets a 100% rating from Charity Navigator and reports from people on the ground say they are indeed stepping up to deliver food, water, and shelter to those in need without regard to faith or culture.
The Maui Food Bank enjoys a 99% Charity Navigator score and has a well established track record of working toward their goal of ensuring no one is Maui County goes hungry. They have, of course, stepped up to throw everything they can into caring for the thousands of displaced residents of West Maui and Upcountry.
The Maui Strong Fund, under the umbrella of the Hawai’I Community Foundation (93% Charity Navigator rating) is focused strictly on collecting financial donations (they don’t accept material goods of any sort or other in kind donations) and partnering with smaller local non-profits to quickly distribute those funds to support specific needs. They are committed to taking NO administrative or pass through fees for these donations.
East Maui Animal Refuge (95% Charity Navigator rating), perhaps better known as “The Boo Boo Zoo,” has long been respected in recue circles as a committed and compassionate organization. In the wake of the fires, countless pets—some seriously burned or injured, others just separated from their humans and lost, hungry and afraid—are in need of help. The scope of the need is on a scale beyond anything the Boo Boo Zoo has ever had to accommodate before, and they can use your support.
The Maui Humane Society (an independent non-profit not affiliated with the HSUS, ASPCA, or any other organization), scored at 97% by Charity Navigator, is also working to take in all animals presented to it, support them in any way needed, and make every effort to locate and reunite them with their humans.
About ‘GoFundMe’ Pages
The GoFundMe ecosystem has established itself in recent years as a quick, easy to use way for people to seek donations for any number of reasons. As such, hundreds of fundraisers have sprung up on the site over the past few days.
To their credit, GFM administrators do their best to rigorously enforce terms of service and quickly take down pages not in compliance. That said, scammers who are good storytellers continue to put pages up as fast as GFM can take ’em down. Thus, I strongly urge people to know who they are contributing to and why before acting just on a heartfelt impulse.
The GoFundMe campaigns listed here are ones I feel comfortable in personally recommending to your attention.
George Kahumoku Jr is an internationally renowned, multiple Grammy winning musician and committed keeper of Hawai’ian traditions and culture. For a number of years, with the able administrative assistance of his wife Nancy, “Uncle George” has organized, performed and taught at a series of slack key shows and workshops on West Maui. Mercifully, George and Nancy’s home and farm was spared the fires, but several members of his slack key ohana did not fare as well. More details are on their GoFundMe page.
Many in the recovery community are familiar with Alano Clubs. These are private establishments, often registered non-profits, that are established to offer “safe space” for clean and sober gathering and socializing, usually in support of 12 Step groups and members. Lahaina town’s long-established clubhouse has been a refuge for residents and visitors alike. The building was completely consumed by fire. Their Board President has launched a GoFundMe to support rebuilding.
The summary on the GFM site tells the story of JJ Jerome, and his heroic efforts to help others even as fire consumed all he owned. This came to me via my sister, who lives in Melbourne, Australia. She reports the organizer of the fundraiser is an old high school mate of hers, and a person of integrity.
I want to say a little about a woman I counted as a dear friend, Mary Kelly, of Scotts Valley, California, formerly of Ben Lomond in the San Lorenzo Valley. Mary took her leave of this world on 11 August 2023. According to her family, she was able to die at home, having finished her dance with ovarian cancer.
At least in part due to my own long dance, I of course take it personally every damned time cancer punches someone’s ticket. But that’s far from the most important thing I need to say about what Mary has meant to me.
It was in September of 1981 that I first found myself in the rooms of recovery, taking that last available shot at doing something other than drinking myself to death. And Mary was one of the people who warmly welcomed me. She did all she could to make this fairly desperate, marginal character who had emerged from the hills with long, stringy hair, cutoff Levi’s, a chainsaw and a dog understand that there was acceptance, understanding, and support on offer. That he was no longer alone and lost.
We came from radically different lives. She’d been raised a Good Irish Catholic Girl, married a handsome and charismatic Irish-American fella, and done her damnedest to fulfill the wife-mother-homemaker role(s).
I was a hippie kid from the Bay Area who had somehow followed his addictions through the music business into the bar business, eventually washing up on the shoulder of a ridge in the Santa Cruz Mountains telling myself lies until I couldn’t any more about my forthcoming career as a freelance writer.
None of that matters here except to illustrate that when we met I presented a lot more like someone she would cross the street to avoid than a man she would befriend and encourage. But that’s what she did.
It’s a common practice for many folks in recovery to do that; to reach out and support new folks just trying to find their way to a stable life. And I found more than a few people who offered me acceptance without judgement before I even understood how to live my life without alcohol and drugs.
I am grateful to each and every one of them. I owe them my life. Over the years, I’ve lost contact with many of those who were there early days. Many have moved away due to life changes, by now a lot have died.
And that was one of my first thoughts when I heard the news yesterday. Mary was one of the last of that community that was there for me when I was ready to change my life. So many are gone now. But with Mary Kelly, it’s more than that. We weren’t “close” in a traditional sense. Didn’t see each other often.
But we would periodically run into one another, whether it was at a a celebratory gathering for a holiday, or mutual friend’s birthday, or something as mundane as a chance meeting in the grocery store. And always, every time, Mary made it clear she was genuinely glad to see me and interesting in how I was doing. That was reciprocated from me. Didn’t have to think about it. My day was just made brighter by her presence.
Now, here’s the thing. That doesn’t make me any kind of “special.” I’d be willing to bet just about everyone who knew Mary will tell you the same. As another friend describes it, she was one who “open carries her heart.” You’d be hard pressed to find anyone who knew Mary who did not love her.
I loved her. No, strike that. I LOVE her. My world is a little less bright tonight because Mary Kelly is no longer part of it.
Farewell, sister. I wish you fair winds and following seas on your journey. I will look for you in the stars, in the mountains, in the sea.
And save me a seat, won’t you?
A good friend this morning posted this photo of the Lafayette Hillside Memorial on his Facebook page. I assume as part of his personal observance of Memorial Day. But whatever the underlying motive for sharing the picture, I’m grateful he did because it touched off some recollections for me.
If you aren’t familiar with it, some quick context. The hillside you’re looking at here sits directly across from the parking lot of the Lafayette BART station, directly facing around 1.3 million riders a year as they arrive to access trains.
The first few dozen crosses were planted on the hillside in November 2006 along with a sign indicating they were a symbolic memorial for the then 2867 US troops killed in Iraq. As you might expect, the display sparked knee jerk outrage from certain “patriots” who wanted BART, or the City and County, or somebody to Do Something about this “offensive display.”
The controversy, of course, led regional (and eventually national) news coverage and I had seen stories, so I was aware of the project. Relatively quickly, city officials ruled the hillside a Memorial” under the language of a city ordinance which exempts memorials and historic markers from regulations limiting placement and size of commercial signage.
Thus the installation was assured some official protection. Around the same time all this was developing, for some reason I don’t now recall, I found myself up in the vicinity “on business,” and decided to take the opportunity to see for myself.
As I drove into the BART parking lot it was late morning, so the commute rush was over. Virtually no one was in evidence that I could see. It was a cold, grey, drizzly morning.
At the time of my visit, the hillside held not more than a few dozen simple, white-painted wooden crosses along with a sign displaying the actual tally of the dead. They were still all crosses then—I’m aware a certain number of Crescents and Stars of David have since joined the gathered markers.
Those crosses, scattered seemingly at random over the green hillside spoke powerfully. Alone in the damp parking lot, I was taken by surprise by the wash of emotions I felt break over me.
Although the Hillside Memorial was created, and continues to be maintained and tended by committed peace activists from the area, there has been, over time, an evolution of the dominant public perception of the project. Most locals, at least seem to have come to understand that objections to the policies and politicians that lead us into the conflicts in the early part of this century do NOT equate to disrespect for those whose lives are lost.
A number of the markers on the hill have been “adoped” by families mourning a personal loss, decorated with photos or other mementos to honor their fallen one.
And it has become the custom for formal gatherings to be held at the site, with a broad base of community participation. The same sort of observance, on a “hometown” scale, that we customarily see at National Cemeteries and other more formalized memorial sites. The schedule for a Memorial Day vigil held this afternoon, taken from the Hillside Memorial website, offers an unsurprising mix of speakers, music, poetry, local elected officials and faith leaders.
I guess my point is something like this: Given that Memorial Day is that singular day on our calendars which we set aside to honor those who went, and did not return to us, I feel heartened, in this time when so much of our current state of affairs feels so dark, that members of a community who may have begun their journeys at very different places are still able to find their way to some common ground where they can join together for just a moment, albeit in shared grieving and loss.
This is the America it is worth working to save and perfect.
NOTE: The web site for the Lafayette Hillside Memorial has quite a bit of information about the memorial itself, how it continues to be maintained by volunteers, and more. You can find it here. https://www.lafayettehillsidememorial.org/
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.
NOTE: I typed the first draft of this post on my phone while lying in bed around 9:30 this morning. I apologize it has taken me over 13 hours to get around to editing it and posting.
Like virtually all Americans of privilege my age, I grew up having been taught only a gauzy, feel-good myth about “The First Thanksgiving.”
In early adulthood (as I did with so much of the cultural container that came as standard for kids growing up white and male in the US in the 1950s and 60s) I moved away from the Norman Rockwell standard portrait of the holiday.
Instead, I came to redefine the day as an occasion to pause, reflect on my gratitude for the love and connections in my life, and celebrate these things with members of my family of choice and others dear to me.
That self-defined tradition was well established before I became fully aware (many years into my continuing education about the true backstory of my “heritage” in this “exceptional” country) of what a painful anniversary is observed on this day by many of my indigenous sisters and brothers.
By the time I began to realize that certain folks I considered close friends, who I loved and admired greatly, always politely but firmly declined invitations to our feasting, explaining they had another personal engagement that day, I was already well into the process of building my own self-defined customs, and was probably a little too self-centered to truly stop and ask for help in understanding what I didn’t know. [This story arc, I am sorry to say, describes so much of the privilege I’ve enjoyed all my life. But that’s a discussion for another day.]
To those reading this who count the fourth Thursday of November a National Day of Mourning I can only say: I see you. I respect you. I feel a tiny hint of the grief and sadness you must carry, and I have great shame and regret that my privilege rests on such a dark and evil history.
For me though, the tradition of gratitude must remain. Not for my material privilege, great though it is. But again, for the love and connections in my life.
Yoshimi and I have spent the better part of four decades now making a life together. And for most of that time, Thanksgiving Day represented a time to gather together the members of our Family of Choice, and others with whom we shared bonds of connection and affection around the biggest table we could find to spend an afternoon and early evening sharing company, love, and gratitude; for each other and for all the gifts, great and small, our lives bring us virtually every day.
There was a time, some years back now, when we were committed to opening our home and playing hosts to all manner of events and celebrations, be they Independence Day barbeques, New Years Eve and Superbowl parties, or gathering a dozen or so of us in the old Hugus Court media room for a communal viewing on the (then huge) 36″ TV and large speaker hi fi system of all 14 hours of the Transatlantic ‘Live Aid’ concerts (a very fond memory for me personally).
We always felt it was part of our compact with the universe to share our ‘blessings’ with an open hand.
And it truly was our experience that in the giving, we received far more, filling our hearts.
But over the years, we have let the events go, one by one, as the doing grew more difficult, for multiple reasons.
The Feast of Thanksgiving was the last. Not quite as long a guest list in recent years as it had been at one time (I think our “record” head count one year was somewhere north of two dozen), but there was always room at the table for that last minute stray or two we might discover had nowhere else to be.
We have held on to this tradition as the others organically fell away.
And it seems right to me that would be the case since this tradition in our house and hearts was expressly about celebrating the gifts of our love and connections.
However, I am sad to say that the days of great feasting are behind us now.
Our last Thanksgiving gathering was two years ago (and one beloved who was at our table then departed from us in 2020—Pam, your memory is cherished, and you are deeply missed).
Last year, of course, the whole world was in lockdown. The vaccine was still months away.
And as the time came ’round this year to begin making plans, Yoshimi and I both realized that we have aged out of the ability to handle the physical demands hosting a feast entails, even if, as we always have, we declare “potluck” and ask all who can to contribute something to the table.
We mutually agreed it is time for us to let this go. It’s just beyond our reach now.
If we, either of us, were a part of one of those large, blood related Families of Origin this would be the point at which the younger generation steps up to take on the mantle. “Starting this year, we’ll be having Thanksgiving at Mary and Bob’s house. It’s a reasonable drive for everyone, and they’ve got plenty of room there to host the whole gang.”
We would naturally slide into the role of elders, expected to show up and hang out in the living room keeping grandkids amused until time to eat.
But that’s not who we are. It’s always been Family of Choice, though that has from time to time included members of our Families of Origin.
At any rate, we find ourselves planning a little dinner for two here at home, and a sit down later to watch the first part of Peter Jackson’s Beatles project.
We’ve been invited to drop in at a beloved neighbor’s, which I expect we’ll do at some point for a few minutes.
All in all, a quiet, very different sort of Thanksgiving Day for us. A softer, more contemplative sort of holiday.
Of course, I mourn the loss of the gatherings which have been a central part of my annual calendar for most of my adult life.
And I must confess to a bit of resentment at the fact circumstances have deprived us of a final “sweet farewell” to the tradition.
“Not with a bang but a whimper,” as the poet said.
>>Aside: We did enjoy a mini-event of sorts this past weekend. Over the past year or so, four of us who initially connected on the Zoom machine for reasons too complicated and not relevant enough to spend time on here have been having “virtual coffee” together every Saturday morning.
This past Saturday my three coffee buddies, two of whom I’d never met in three dimensions, gathered themselves together from disparate locations around Northern and Central California and presented themselves here at the Red House for lunch in the warm November sun on our back patio. Nobody called it a “Thanksgiving gathering,” but it was, in microcosm, exactly that spirit of fellowship and love that has held the day at our annual Thursday feasts for so many years. And although we’ve hosted a couple small dinners for one or two local friends, it was the first time I’ve enjoyed this sort of physical proximity here at home with people I love since the Before Times.
So thank you my Rock Dropping compadres for bringing the party to us!<<
It’s a bit melancholy, I must admit, finding myself in what a friend of a friend has called ‘the short seasons of life.’
These days I seem to be living in an endless river of losses and departures as deaths, changes of circumstance, and evolutions of people, places, and things proceed apace.
It remains my job apparently to continue to find the beauty, the joy, the love, that moment that is embedded somewhere in each day I’m granted the opportunity to participate in.
And that’s not a bad job at all when you think about it.
So, for those who mourn today, my heart is with you. For those who celebrate, I join you in gratitude and express my profound thanks for each of you these words reach, and the part you play, have played, or will play in the arc of my life.
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.
I first met Jerilyn Brandelius when she came to San Francisco from Southern California in, I think, 1969. Someone (she told me once, but I forget who) introduced her to Chet Helms who was, of course, in dire need of a personal assistant/factotum to ensure follow up and follow through on all manner of business items, and keep the office on track and focused.
This was right around the time Chet had acquired the lease on the old Beach Pavilion building out on the Great Highway, across the road from Kellys Cove and comfortably tucked between Playland at the Beach and Sutro Heights.
In the weeks before we opened, as we got the building ready to do service to Chester’s vision of creating a space somewhere in between a dance hall and house of worship where people, music, lights, the Pacific Ocean could all come together and create magic(k), I had managed to find enough ways to be useful to create a full-time job for myself as Head Hey–You. Did everything from take tickets at the door, to help with stage managing and sound, to cleaning out perennially clogging toilets in the restrooms and sweeping and waxing the dance floor after shows.
So, Jere and I were “work colleagues.” But of course, when you worked for Chet Helms, it was never “just a job.” We were all “family.” Mates in that same ongoing effort to help Chet create something special that might lead—well, who knew where? And I learned things about who I wanted to be in life, and made connections with people that would endure over the years (even when we found ourselves out of contact for decades).
Jerilyn was one of those people. I loved her to the bottom of my heart then, and always have. And she WAS one that I lost contact with for many years. After the Family Dog on the Great Highway went under, I moved on to work for several bands, one of the Bay Area’s few (at the time) sound reinforcement companies that had the equipment and knowledge to work rock and roll shows, and several clubs and other music venues.
She, meanwhile, ended up in Marin County in a relationship with a musician from a well-known band, and got focused on raising her two kids, along with a tribe of other children associated with the “family” that surrounded that band—Oh, I’ll go ahead and say it. It is somewhat integral to the story, and no secret. After the Family Dog family broke up, she was absorbed into that vast amoeba which was the Grateful Dead family in the 1970s.
One of the reasons that becomes important at this point is that part of the legacy she leaves is a whole second generation of “Dead kids,” now in their 40s and 50s, who grew up more or less as a free range pack of young ’uns airing it out across the acres of various ranches and other properties scattered across Northern Marin County. In many ways, Jerelyn had stepped up into the role of fierce mama bear, not just for Creek and Christina, her two children, but for all the kids rattling around. More than one has told me that growing up in that somewhat ‘fluid’ scene, they always felt secure in the knowledge they could seek out Jere for her counsel and guidance; or just to have their backs. She became in some respects the most reliable adult in their world.
We didn’t have much occasion to connect, unless we happened to run into each other backstage at a show. While she had gone North, I had elected, post Dog, to remain in San Francisco and dig in to the more urban scene there.
Eventually I dropped out of the music business and moved down to Santa Cruz County, losing touch with her completely.
I later learned that after her relationship with that band member went the way of so many rock and roll pairings in that era where a good looking guy spent much of his time on the road being the center of the party while his “old lady” kept the home fires burning, Jerelyn easily transitioned into an office manager role for an East Bay chapter of the Hells Angels MC.
Because she was just that centered and secure in being Jerelyn Brandelius that there was never any doubt about her competency to take care of the myriad threads of necessary bank account management, tax reporting, regulatory compliance, and all the other things a fraternal organization that size is accountable for—especially one that’s a highly visible target for every investigator and prosecutor out to make a name for himself.
Of course, despite the fact her romantic relationship had gone south, her ties to the Dead Family always remained strong. The relationship held value for her, and for them, and she could be found around band (and family) related events right until the end.
Jerelyn’s profile in the broader universe of Deadheads exploded after the publication in late 1989 of the Grateful Dead Family Album, a massive coffee table book with cover art by iconic San Francisco artist Stanley Mouse offering almost 250 pages of photographs, many of them behind-the-scenes candids shot by Jerelyn, accompanied by text of her reminiscences and often droll observations on the scene over the years.
But I’m getting too buried in the biographical minutia here. I need to circle back to how it is that she rests so deep in my heart, a half-century on from our first association.
I guess it was maybe 15 years or so ago that a young friend of mine from down here in Santa Cruz County—a second-generation Deadhead if you will, phoned me filled with excitement after a trip to the Bay Area for a show.
Seems he’s been manning the Wharf Rats table (a subset of Deadheads in drug and alcohol recovery) when Jerilyn stopped by. He’d heard me tell tales of our history when he’d gushed about the Family Album book, and he mentioned to her that he knew me.
Remember that, at this point, we’d probably been out of touch for a couple of decades. Well, she was apparently excited to reconnect, giving him her phone number to pass along to me. So the kid came home feeling like a minor rock star.
That’s how we finally got back in touch, so many years later. We managed to get together a few times over the next couple of years, but I wasn’t at a time in my life when I was getting to the City much and she only occasionally came south, usually to support friends playing a gig somewhere in the Santa Cruz area.
Then the damned liver thing happened. Among other qualifying hoops they make liver transplant candidates jump through is a requirement they abstain from alcohol and drugs. I was able to add my voice to others from within the family in assuring her there is, indeed, life after recovery. That doing this deal clean and sober actually turns out, in a lot of ways, to be the most colorful trip of all.
Scared the hell out of me when word came she was going in for her transplant; I’d had a few other friends receive organ transplants and knew, at least in a general way, what a major deal it was. Of course, if I allowed myself to feel concerned, I wasn’t reckoning with just what a badass Jerilyn has always been.
As expected, it was a long, difficult, post-transplant recovery period. But sooner than you’d think we were making the pilgrimage North, groping around Ft. Baker in the dark, trying to find the Presidio Yacht Club. Once we finally stumbled in, we found the place packed with folks, both famous and obscure, there to celebrate Jerilyn’s first return from the dead.
In recent years, it’s become easier to keep in touch with the rise of social media. And, as my life focus shifted, I began to make it up to San Francisco a bit more often.
As it turned out, liver failure couldn’t hold a candle to the next gut punch the universe had lined up. In January of 2014, Jere’s daughter Christina (who I’d had the opportunity to amuse from time to time in the Family Dog days when she would hit that fussy spot little kids do when they really need some attention—just at the same moment her mom was engaged in an important long distance phone call nailing down next week’s booking) died far too young, succumbing to an asthma attack.
Possessing the terrible qualifier of having walked through the death of an adult child with my spouse, I like to believe I was able to be there for her in a way few others could be. We didn’t spend a ton of time together, and there wasn’t a lot of conversation. But our connection deepened in a way that’s beyond my ability to find words for.
This past half-dozen years or so, we stayed in consistent touch even though the 90 miles or so that separated us meant we still didn’t manage to get in the same place at the same time more than maybe three or four times a year.
But I believe there remained a level of love and connection between us that continued to deepen, without the need to speak of it, on each and every occasion we spent some time together, whether she had drafted me for chauffeur duty, giving her a ride to or from a gig someplace or we turned up at the same soiree—more often than not one of the legendary get togethers at Chez Grabien, where the company, the food, and the music were always exceptional.
We could usually manage to get ourselves off to the side someplace for a while where we could just sit and share space and unspoken history. Might be 15 minutes; might be a couple of hours. Usually, little was said once the initial check-in business was out of the way. How’s your health? What are you listening to lately?
For several years, there would be the obligatory quick catchup on John Perry Barlow (songwriting partner with Bob Weir, and later in life the visionary who birthed the Electronic Frontier Foundation); she was principally responsible for his caretaking over several years at the end of his life.
Because, you see, that was a thing Jerilyn did. I think I mentioned her being the rock at the center of the world of a whole generation of Dead family kids. She did the same thing for Barlow. She had also spent a period of time back working for Chet Helms again in what turned out (to everyone’s surprise) to be the last few years of his life.
Jerilyn was fierce. Fiercely loyal. Fiercely protective. Fiercely supportive of those she loved. And if one of hers was in trouble she was there to hold steady with them in the storm.
Of course, that fierceness meant she could also be a world-class pain in the ass when she was fighting for something. That could, on occasion, rub ‘outsiders’ the wrong way. And, if I’m totally honest, it would on occasion drive those who loved her up the wall as well.
But it was never born of malice, always passion.
After her stroke a couple years back, Jerilyn once more pulled out all that fight and determination. It pissed her off no end to find herself physically compromised, and she threw herself into all the recommended physical therapy, dietary guidelines, and lifestyle recommendations (at least as best she could make them fit her world) to regain a huge percentage of her capacity.
I think she fatigued quicker. And I’m sure (though we never discussed it in detail) she was finding herself carrying a greater and greater pain load on a daily basis. Hell, we all live with chronic pain at this age; especially those of us who ran our bodies so hard when we were young and heedless.
But, as somebody pointed out the other day, there was a part of Jerilyn that never fully came back after Christina died. There never is really, is there? The death of a child cuts a chunk out of a mother that can’t be healed or filled in. And she loved as fiercely as any mother I’ve ever known.
It’s funny. There’s that word again. Fierce. Absolutely, Jerilyn was one of the most badass, determined women I have ever known. And she walked through enough shit for any three people in her life, with her head up all the way. So, yeah. Fierce.
And yet all my memories of her are tender, sweet, infused with love. No, we didn’t spend a lot of time together. We never had, really. But she has been a part of my life since the earliest days working for Chet, when I was beginning to figure out who I was going to grow up to be. How I would carry myself in this world.
So, going forward from here for as long as I remain, I’ll carry myself in a world now missing one of the touchstones of my life. We were never married; we were never lovers. I don’t think we ever even intentionally got high together. Dosed at a few of the same shows, I’m sure. But that hardly counts around that rolling circus.
I am grateful that the closest inner circles of family were able to be there as her body wound down and her spirit departed. I know that Betty was there. I understand Weir was able to come and sing her home as the machines stopped and it all finished.
I am going to miss the hell out of her. I already do. This has been such a bastard of a year, for everyone. I suppose it even makes a certain amount of sense that this would be when Jerilyn finally reached that point where she had to lay her hammer down.
I will get my head wrapped around accepting it, same as all the rest of this year. Because we have to, don’t we? But I don’t goddamn like it. And I shall, indeed, feel her absence the rest of my days.
“Fare you well. Fare you well. I love you more than words can tell.”
Plans are in the works for a virtual gathering on line to celebrate the life and memory of Jerilyn. I will post an update here, and on my Facebook page when details become available.
It’s the height of berry season, and you might find this little foodie piece featuring tips from the California Strawberry Commission useful.
Let me add one other ‘tip’ that isn’t mentioned here. BUY LOCAL!
That’s always a good idea anyway. You’ll pay a little more at your farmers’ market, or a local roadside stand if you have one, but you can usually find food that was in the ground a day or two ago.
And, as the video in the link suggests , that’s especially important with strawbs. By their nature, they don’t hang around long off the vine. And the big growers and coops—those ‘brand names’ you’re used to finding in the produce section of the supermarket? Well the best case scenario is that fruit was picked damned near a week ago before you see it and has hung out in a series of coolers before it makes its way to you.
Those big operations have in-house, cutting edge labs that work year-round on hybridizing berries for shelf-life, size, and appearance. And they’re damned good at it.
Unfortunately, that specialized breeding always comes with tradeoffs. And especially in the case of strawberries, when you breed for those commercially desirable characteristics there is a price to pay in texture, sugar and moisture content, and most of all: flavor.
It’s just no damned fun eating supermarket berries any more.
Fortunately, in most parts of the country (and ESPECIALLY here in our little valley) you don’t have to!
Been quite a long time since I wrote anything here (and apologies for that—my bandwidth is limited these days) but last weekend I turned 70 years of age and it does not seem right to let that pass without comment.
“Last weekend I turned 70.” That is a statement I never expected to make. Even aside from the cancer, given my family history, the ways in which I beat the crap out of my body for most of my life, and my lengthy laundry list of chronic maladies, it doesn’t make a lot of sense that I’m still here.
And yet, I still am. So, what to make of that?
One of the great benefits of receiving the “upgrade” of my cancer to Stage Four in July of 2017 has been the opportunities for growth and contemplation finding myself in the position of “dead man walking” has afforded me.
Of course, I have no way of knowing how I’d feel about passing this milestone absent that terminal prognosis because that’s not what has occurred. But what has happened is that I have enjoyed damned near two and a half years of “grace” now, in which I’ve been spurred to consider my upcoming mortality and review the arc of my life story with a clarity and focus many folks don’t have the chance to experience.
And now, we add to the mix that “big number.” I’ve never before been one who takes much note of birthdays. At least not since my adolescence when I, like all my peers, dealt with a succession of artificially designated “qualifying ages.”
16 to get a driver’s license, with the independence and freedom of movement that go with that for a kid who lives beyond the bus lines; 18 to register for the draft and seriously start to figure out what the hell to do personally about a war I’d been protesting and resisting for three or four years by then; 21 to finally be able to cast a ballot. [Oh, yeah, at 21 I could legally buy a drink too. Although, at the time, my focus was much more directed at things that were prohibited at any age.]
So, yeah. Over the years I’ve watched friends do all kinds of freaking out when they hit 30 (remember “don’t trust anybody over 30”?), 40, 50, 60. But for me, it’s always been sort of “meh.” Well, maybe 50 a little bit as I found my internal monolog cranking out phrases like “entering my second half-century.” But even that was more a case of “hmmm, well that’s interesting” than anything else.
I think when I hit those earlier so-called milestones there was more a sense of accomplishment for having gotten this far than anything else. But this seems to be playing out very differently for me.
Trying to unpack it, I think a lot of it probably does have to do with the fact that I’ve been in “dead man walking” mode for a couple of years now. And that brings with it a couple of things.
The first is, quite simply, surprise that I am indeed still alive. When I first got the official word that I’d been upgraded to Stage Four and that “this is only going to end one way,” I asked the oncologist for her best guess, for planning purposes, on roughly how much time I could expect before the dank bastard shows up to tap me on the shoulder.
She said typically a year or two. She gave me that framework in July of 2017. That’s two and a half years ago. And although my baseline daily “how ya feeling” is certainly crappier than it was then, I’m not feeling anywhere close to completely spent yet. So here I remain, well past my ‘sell-by’ date, with a reasonable expectation I’ll still be breathing in and out when I wake up in the morning.
So that’s a piece of it. All of the above, and now I’m seventy god damn years old to boot? Day-em wouldja look at that!
I suspect the other reason this turning 70 deal has caught my attention also has to do with the fact that I’m working my way through this “final season” of my life.
Bear with me, I want to talk a little about what processing my somewhat impending demise has meant for me.
Start here. I am not a man of faith. I may well be, in some respects, “spiritual,” I’m probably not the best judge of that. But I don’t follow a religious path (I have no quarrel with those who do—matter of fact I regard many of them with deep admiration and respect). It’s just never been a comfortable fit for me, and I’ve tried several different belief systems on for size over the years. Thus, I don’t enjoy a sense of self that promises a continuity beyond death, let alone what that might look/feel like. So, no expectations.
Now, most of my life I’d have gladly told you that, if I get a vote, my preference would default toward being completely surprised by some unanticipated immediate interruption—an unfortunate encounter with a speeding truck, perhaps.
Thing is, in the event, I’ve found this extended final glide path to be an unimagined luxury. [Demonstrating yet again that I rarely seem to know what’s actually best for me.]
For one thing, this interregnum has afforded me an extended opportunity to review and contemplate the life I’ve had. And while I have had to navigate my share of difficult situations (many of them of my own making) any reasonable observer would have to say I have been exceptionally fortunate throughout my life.
I’ve enjoyed the opportunity to be associated with a remarkable number of very special individuals. Talented artists and musicians, passionate and generous leaders of many, many types, dear friends who have loved, sustained and taught me so very much.
I have lived my life almost exclusively in locations that are among the most beautiful on the planet, more often than not in communities populated with caring and responsible people.
I’ve had employment, across several professional tracks throughout my working life that has almost always provided dignified, ethical, and fulfilling work, usually with bosses and peers I could respect and whose company I enjoyed.
Speaking of “good company,” it seems life has also brought me a wonderful collection of true friends—folks I care about deeply and who seem to reciprocate the feeling. More people than I can begin to count, a significant number of them folks who have been a part of my life for decades.
Despite the odd moments of friction here and there, I enjoy loving, solid, and respectful relationships with three generations of family members.
All this barely scratches the surface, but you take my point, I hope. The opportunity to “review the record” this past couple of years makes me inexpressibly grateful for the life I’ve lived, making this unexpected opportunity to celebrate a 70th birthday a special moment, indeed.
At this point in the journey, I find myself surprisingly openhearted. I am deeply moved by the triumphs and disappointments, the joys and grieving of those around me. And that ability to be touched by what’s up with you is something to cherish as well.
I’m an alcoholic and drug addict who has now been living in recovery for more than half my life. When I first found my way into sobriety, I was damaged in many, many ways. Among them was my belief, based on self-observation, that I just was incapable of truly connecting with my fellow humans. I felt like the emotional equivalent of a driver who’s involved in a bad accident, totals the car, but walks away with just a few scratches—not truly impacted by what just occurred. I was convinced I had just been built without the wiring circuits that created the ability to truly care about others.
But in this “second act” of my life, the half spent in recovery, it turns out that’s not the case at all.
No, it turns out that there is nothing in my life more important to me than the connections I feel to all around me. The natural beauty of the world we live in, the opportunities each day brings to experience things—those new and revelatory as well as the familiar with the pleasure and satisfaction it brings. And especially the relationships with my fellow humans.
It turns out that I see my job at this point as planting, nurturing, fostering the Love anywhere and everywhere I can (and each day is filled for opportunities to do that).
It turns out that I’m not just capable of connecting with others, it’s what I do best, and the most important work in my life.
So, happy birthday to me. I’m 70 fer crissakes. Sure did not expect that.
“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.