A year ago this evening my kids and I were setting up to play Rock Band 4 when Margaret shouted for us to join her in the bedroom. We dropped our plastic instruments and ran to Karen's bedside. Within a minute Karen was gone, both kids were sobbing, Margaret was bawling, and I had thrown myself across Karen's still chest, hugging her close and crying.
I expect today will be less dramatic. But so far it has not been especially easier. I spent the better part of this morning alternating between staring at my computer screen and weeping. It's been a year. It still hurts but not as sharply. These days the pain is dull and aches.
But this week has been a challenge. Today loomed large all week and I essentially retreated to my big, empty house, hunkering down and feverishly trying to get work done in anticipation of being not especially motivated today. A considerate reprieve from work is the highlight of my day so far.
Late at night last October 21, I wondered a few things. What would I do without Karen? How could I make it a year when making it hour to hour was next to impossible? Where would I be in a year? Who would I be?
I can't answer all of it but I can answer some of it. I'm much more easily overwhelmed these days. I don't know if it's fallout from juggling about one million things over the years of Karen's illness but I really try to keep my life as minimal and undemanding as possible now. Thankfully, the pain of losing her is no longer constant but the missing of her, the yawning void in my life where she used to be, that challenges me every single day. I talk to her daily, addressing the empty seat in the car, the empty stool by the kitchen island, her end of the couch, the aching hole in my heart. It helps.
My house is a minefield of memories and virtually every day I am whipsawed one way and then the other. Here's the spot where the kids decorated Christmas cookies with their mother every year and over here is the spot where Karen fell that time near the end and screamed in agony and scared the living fuck out of all of us. The peaks and valleys are so extreme I feel like I have the bends and altitude sickness at the same time, lots of the time.
The last year has been one of dizzying change. Miranda has moved into an apartment with friends and is preparing to transfer to a new college and will likely be moving away late next summer. Dash has moved out as well. Unfortunately, he left under a cloud of tremendous anger and we haven't really heard much from him since. This change in particular hurts. It's hard for Miranda and I not to feel as if our family has been cruelly halved. We reach out in the hope that someday, hopefully soon, we'll start rebuilding bridges from both sides.
Early next year I'll be selling the house and moving into an apartment locally. I intend to spend the following year answering one question and that question is "What the fuck?" The last year has had a lot less downtime than I'd anticipated and I want a leisurely year to figure out where I'm living, where I'm going, what I'm doing. You know....what the fuck? Getting the house ready is a pain in the ass but I'm actually looking forward to the move and finding out just what I want out of the next few decades.
I know I've said it before but this is truly the final post here. I realize now that there is no real end to this chapter in our lives. It will go on forever I think, ebbing slowly but never vanishing. I deal with it by imagining how much pleasure Karen would take were she around to share everyday life with me. I imagine how proud she'd be of her kids. I sit in my chair in the living room and watch the memory of her get up from the couch and go into the kitchen for a snack. I hear her voice from the other room.
And when my throat tightens and my heart sinks I remind myself that the pain of missing her reflects how deeply she loved me and I her. I try to focus on that, on the love we had and the love I still have in my life, with my kids, with my tremendous friends.
That's what got me through the worst of everything over the last four years. I am banking on it getting me through the rest of everything (as in the rest of life itself) as well. It makes the days good and I want as many good days as I can get going forward.
I love you, Karen. We all miss you. Thinking of you is far more happy than sad no matter the tears. Thank you for everything.
A week ago today, Monday, March 28, was what would have been Karen's 54th birthday. For us three remaining Coffeys, the day loomed large well before it arrived. Although the 21st of any month cannot pass without us mentally calculating how long it's been since Karen died (5 months), for the most part we have been doing well. Like, really well, surprisingly so. But her birthday was intimidating and we weren't sure how to deal with it or what to do.
In the end, we opted to more or less follow family tradition which dictates that the honored person gets to have their current favorite meal prepared for them. In Karen's case, that's meant fried chicken, asparagus, and mashed potatoes and gravy for the last 20+ years. So in her honor, I made a huge platter of chicken and the kids and I stuffed ourselves silly the way she would have. It wasn't sad or maudlin or anything; rather, it was kind of great. We talked about her, shared stories, and speculated on just how many pieces of chicken she would have devoured.
That said, the earlier part of that Monday caught me totally off guard. Like I said, we've been doing pretty well, myself included. But that morning I woke up and found that somehow I had been dragged back through time a good four months or so. The grief of that time descended upon me full force and I wept that morning for the first time in months. The rest of the day was a dull, grey wash of aching loss that lifted right about the time I started prepping the chicken.
It was a hell of a start to a long week.
On Friday, the kids and I flew to San Diego and checked into a ridiculously overpriced two bedroom suite with ocean views at the Hotel Del Coronado. The trip was unremarkable except for the poor TSA guy who wanted to do an explosives check on the box in my backpack. I was held up on the other side of the body scanner waiting for a fresh agent to scan me and watched anxiously as the guy opening up my backpack recoiled from the box as if it were packed with armored radioactive cobras. Miranda had politely informed him that her mother's ashes were in that box and he needed to wait for me. Sorry, dude. At the hotel that night, we had room service, lounged in the hot tub on the balcony, and noted repeatedly how much Karen would have loved it.
But Karen had always loved Coronado. She loved the ocean, she met me there, she met her best friend there, she fell in love with theatre there. It was, she had told me, the happiest time and place in her memory because she felt as if her life really began when she lived there.
On Saturday, I strapped my backpack on and the kids and I headed to the old high school. I had reached out to a former classmate who had become a teacher there to let us onto the grounds. After a tour of the dramatically changed school, my friend excused herself and left us alone. While the theatre was new it rested on the same footprint as the one where we had met. We sprinkled some ashes around the stage and I left a light dusting by the seats where she and I first spoke to each other some 37 years ago. We left, found her old house, and sprinkled some ashes by the tree out front. I tossed a handful of ashes on the corner of 2nd and Orange where we met every morning before school.
Then we chilled at the hotel most of the day.
After a lovely dinner with my parents and after my dad drove us around North Island so the kids could see where I used to live, the three of us returned to the hotel and I strapped that backpack on once again. It was long since dark and while the night was moonless, the stars provided enough light for us to march across the sand to the ocean. I pulled the remains from my backpack and carefully opened the bag. The ashes were both chalky and gritty, with unnerving bits of bone mixed in. We each took handfuls and stood there, wondering what to do next.
Words seemed to be in order but unlike the memorial service, I'd prepared nothing. Instead, we winged it, the three of us noting that we were together, we were good, we were having fun, and she would have been delighted with all of that.
And with that we began the scattering, sidearming handfuls of ash into the ocean, backpedaling quickly to avoid getting our feet and shoes wet, tossing the ash into the receding edge of the waves inches away from our toes. Dash took two huge handfuls and charged into the surf, releasing Karen when he was chest-deep in the Pacific. The ocean didn't take it all at once and the unearthly whiteness of the cremains practically glowed in the starlight against the dark wet sand. The last several handfuls we placed in a pile and watched as successive waves took increasingly larger portions until nothing was left. I turned the bag inside out, shook it to release the ash clinging to it, and that was that.
This was Karen's final wish and, with the exception of the clueless group of seven tourists who decided to stop their stroll practically on top of us even though it was ridiculously apparent what we were doing and maybe a little elbow room might have been in order, well, with the exception of them it went the way I think she would have wanted it.
On Sunday we went to the zoo and had a great time remembering previous visits with Karen.
And today, Monday, we came home. And, man alive, was I sad about it.
It's startling how the sadness still manages to ambush me. I had expected the scattering to be hard but it really wasn't; on the contrary, I think we actually kind of enjoyed it and that's exactly what Karen would have wanted. But while packing up and leaving this morning I found myself awash in a melancholy that still hasn't fully dissipated.
The cause of it is simple: we left her behind. She's not only not here, she's over there now, hundreds of miles away. While the metaphysical separation is challenging to wrap your brain around, the physical one is cruelly obvious. It's weird how deeply I feel leaving her last physical remains behind because I have been totally non-fixated on them in any way. I have barely given them a thought--for five months now they've been in a bag in a box in another bag in a closet in a room in a corner of the house I rarely go. I have literally not thought of them for months at a time. But for some reason, leaving that behind in a place that I, at best, will rarely ever visit, bruised a part of my heart anew.
I imagine that time will find new ways to freshen what will one day be an old wound and we will need to accept that and keep soldiering on. I have a small bit of ash set aside for my trip to New York in May and I imagine that leaving that bit behind will pain me just as much. Or maybe more. It is literally the last of her. But I'm thinking that the fact that I will be returning there throughout the rest of my life and, ideally, as a bunch of ashes after that life has run its course, will give me some measure of peace since it means we will be reunited periodically until we are both wafting through the city air.
That's my hope, at least. It sounds right to me. So I'm banking on that and forging ahead in the meantime.
It's been three weeks since Karen left us and we still are ambushed daily by new ways we miss her. Just last night, I was filling in Miranda on Chris Isaak (we had heard a bad arrangement of Wicked Game) and I immediately wished Karen were around so she could launch into her rant about Mr. Pretty Boy whining about being lonely while surrounded by topless supermodels. It's the countless small things like that which upset our equilibrium multiple times a day. Bigger things--like the ongoing ordeal of cleaning out her closet and dresser--just smash me flat and leave me near-mute for hours.
Speaking of my voice...I think it's about time I shut up.
I started this blog three years ago to keep family and friends informed on the shifting state of Karen's health and our family's efforts to deal with it. While I've always done all the writing--usually without any sort of consultation with Karen--it was always my feeling that this blog represented both of our voices. With hers now silenced, it seems wrong to continue.
And frankly, that story has come to a close. I don't know what story lies ahead (I'm betting it's a protracted horror tale), but I know its place is not here. And probably not in another blog because I'm disinclined to write something I personally wouldn't bother to read.
And so, on behalf of myself, my kids, and Karen, I bid you all a fond farewell. I will never be able to adequately thank everyone who helped us endure the last three years. For everyone that pitched in on the Meal Train to all the folks that helped distract me with Words With Friends games to the poor souls that actually talked to my woebegone self on the phone periodically, I extend my deepest, most heartfelt thanks.
I hope that no one who has read this blog ever has to go through this.
I hope that if you have to, you have the great good fortune to do it with a person as unflinchingly brave and unconditionally loving as Karen.
I hope to find my way out of this mess and into the life that I know she wanted for me.
Yippee Ki-Yay, motherfuckers. Rock on and die hard.
Distant family and friends started arriving Thursday and on Friday they were all pitching in to help make our Saturday observance go over as well as possible. I spent the day announcing that I was not going to do anything--and I didn't. It wasn't that I didn't want things to go well but I was focused on the memorial and delivering the eulogy and I was surprised to find I didn't have the bandwidth to give even a fraction of a fuck about other things. I am grateful that so many people pitched in and didn't care that I was opting to socialize while they tidied and organized.
Like I said, I was pretty much obsessed with the eulogy. When Karen and I first reconnected more than a quarter century ago, I was super-broke so I wrote a book for her for Christmas (this remains the only "novel" like thing I've ever written). Over the next several years I'd write a lot more for her. This was the first time she'd ever actually requested I write her something and given the situation I felt tremendous responsibility to live up to her clearly confused perceptions of my typing prowess. And I felt overwhelming pressure to do right by her.
And in fact, that pressure extended to the service itself. Late Friday night, after another self-disgusted pass on the eulogy I had a moment of panic and worried that everything we were doing was going to go terribly wrong. Karen and I had made some unusual choices and I was concerned that we would offend the church people attending from St. Paul's and maybe even piss off the funeral home.
In the end, I changed nothing and went with it. Everything followed the plan Karen had wanted and approved.
And everything went well. No, actually, everything went magnificently.
Half an hour prior to the official start time of 1PM, we began playing music. I'd put together this playlist about two years ago and every song has a purpose and most have some intense personal meaning (I cannot listen to the Lou Reed songs here without utterly losing my shit). Accompanying the music was a projected slide show of photos of Karen throughout her life, some of which you can see throughout this blog post.
Here's a link to the playlist: Bon Voyage Entrance. Quick note: the last song was actually played as people left, it was not part of the walking in playlist.
After that bit of cheeriness, it was time to set the tone for the memorial that would follow. To that end, Karen had chosen the following video to be played. This was the real test--and the laughter that greeted the video was just about the most welcome sound I'd heard in ever.
In our infinite consideration and wisdom, the program required the reverend from Karen's church to somehow follow that bit of solemn reverence. Somehow she pulled it off with tremendous aplomb.
This was followed by readings and shared stories from the attendees. Dash led off the Open Mic section of the celebration with a fantastic off-the-cuff speech expressing his determination to remember the truth of his mother. Everyone that spoke did so from the heart and while there were plenty of tears, there was more laughter. The room was filled with warmth and a sense of togetherness and community that surprised me but when you consider the genesis of it all--Karen--it really shouldn't have been so unexpected. She had brought people together and inspired happiness throughout her life. Why should have this day been any different?
All in all it didn't just go well, it was wonderful. It was a comfort. It was cathartic. And the hours we spent afterward at home, with so many friends and family remembering her and just having fun...well, that was extraordinary. I will never be able to thank Karen enough for providing me and kids with such a great day.
As for the insurmountable mountain that was the eulogy, I managed to deliver it without breaking down. People seemed to receive it well. I think I did well by her and that was all I wanted to do.
I've copied my eulogy below. This is more or less exactly what I said although I added and edited a bit on the fly.
EULOGY
Early on in our New York life, well before we got
married, Karen and I saw Nashville at
the Film Forum. She’d never seen the movie and I had been so young when I’d originally seen it I’d basically forgotten it. When we stepped outside the
theater it was a freezing cold January day but it was sunny. We started talking
about the movie and it turned out the highlight for us both was this one scene
featuring Keenan Wynn.
I remember this for a couple reasons. First, it was
a great walk home. I’d lost my gloves so I stuffed my hands in my overcoat
pockets and she hung on my arm the whole way back. Every time we had to wait to
cross a street we’d embrace and a few times we missed our light but that was
okay because we just extended that embrace while we waited for our next chance
to cross.
Second, I remember that day because it notably created
our personal shorthand for those very rare and intense moments of feeling you experience
with art and artists. We called them “Keenan Wynn Moments” and we were pretty
stingy when it came to doling out the coveted Keenan Wynn status. Few things
were—or are—Keenan worthy.
But with the benefit of hindsight filtered through
the lens of, let’s say, recent events, I’ve come to believe that these moments
were never about Keenan Wynn or Brando or Rickie Lee Jones or whoever but instead
they were really all about Karen. These were actually Karen Coffey moments
because without her they never would have resonated so deeply with me. If I
didn’t share something with her it was almost as it if never happened. And during
my reflection over the last couple of weeks, I’ve come to realize that that sort
of intense clarity and impact of the moment wasn’t limited just to these rare
isolated instances but, rather, they were just the most prominent of the daily
remarkable occasions that defined our 37 years of caring for each other.
So, really, my life has been all about collecting as
many of these Karen Coffey Moments as I could, from the time when I was 15
years old waiting every morning on the corner of Orange and Second so I could
walk her the last couple blocks to school to a little more than two weeks ago. The
most keenly felt and most gratifying experiences in my life were all shared
with her and I’d like to share two that bookend our marriage.
First…Over the course of our honeymoon there were a
lot of mishaps—a tennis injury that I inflicted upon her, a dodgy hotel, a massively
delayed flight, and a very very unfortunate overnight journey on the Orient
Express—but what I remember most from that trip is one evening Karen and I spent
in Salzburg. Every August there’s this month-long Mozart festival and we had
picked up tickets to a string quartet performance at this castle that sits on a
large hill high above the rest of the city. At intermission, the two of us
wandered out onto the, I don’t know, I guess you’d call them ramparts or
something and we looked down at the city. There was a full moon above us and
below us a layer of fog rested atop the city.
We looked down at Salzburg and marveled at how
beautiful it was, with these thousands of sparkling lights trying to pierce the
fog over this classic kind of storybook village. They shot Sound of Music
there. Anyway, we stood there for a long time, right up until they announced
the performance was about to begin again. But right then, somewhere in the city
a symphony orchestra was performing Beethoven’s Ninth and just as we turned to
return to our seats they hit the Ode to Joy and all of these voices just came swelling
up from down below us. So, while everyone else at our concert took their seats,
we stayed outside. Just the two of us, no one else. We stayed out there until
the symphony ended and was replaced by just thunderous applause and cheers from
what we liked to consider as the concert’s secondary
audience. We cheered and applauded, too, Karen laughing and clapping with
her hands above her head. After that, we spent about five minutes or so trying
to figure out how to get back into the castle. It wasn’t easy—those places are
literally built to keep people out. And I think Karen needed to use the
bathroom so that made our inability to get inside just a little more urgent and
a little more entertaining.
Still, it was magical. It was. I was never more in
love with her than at that moment, some eight days give or take into our
marriage. And honestly I was never any less in love with her, either.
More recently…
Karen’s last responsive day was October 19, which
was just two days before she died. She had the strength to do just three things
that day. First, she smiled when our longtime friend Cliff visited and held her
hand. Second, she opened her eyes and whispered “Hi” to her daughter who was
perched right next to her bed and chattering away at her. The third thing came
later that night. Understand: Karen was really struggling with pain at this
point and unfortunately it was necessary for us to periodically move her for
her longer term comfort, but moving her hurt. Enough for her to cry out at
times. We apologized all the way through it, each time we did it.
And yet…this one time, this one last time, as I leaned
over her frail and broken body in order to lift her just enough to shift her
just a little bit, she somehow managed to get her left arm across my back. Her
fingers spread out and I could feel her pressing her palm against my back. 48
hours before she’d leave us, she wanted me to know she loved me. And to
reassure me that it was okay to move her. She was taking care of me.
It was her
last conscious act. It was my last Karen moment.
That final action speaks to the core of who my wife was,
why she mattered to so many people, and while she’ll continue to be a
touchstone in our lives. I’ve never known anyone who was so deliriously and
joyfully in love with the world and who and what it offered. The breadth of her
unbridled love is exhausting, frankly.
Just to illustrate this, a few things…
Karen loved:
Leonard Cohen, Aimee Mann, Barbra Streisand, Marlon
Brando, Vanessa Redgrave, William Shakespeare, Anton Chekhov, William Faulkner,
Gabriel Garcia Marquez, Louisa May Alcott, Einstein on the Beach, Laurie
Anderson, the IT Crowd and all of the Oz books.
She loved Game of Thrones—both on TV and in print.
She loved The Lord of the Rings—on screen and in print, although, honestly, it
was the movies (especially the extra-long director’s cut) which were dearest to
her heart.
She loved working in her garden. She loved her roses
and inexplicably loved the lilac bushes I bought her that refused to bloom. She
loved her weekend trips to the nursery, planning our new front yard, and
dreaming about putting a pool in the back.
She loved Buchhardt Gardens, the butthole of Sauron,
going on cruises, suites at the Bellagio, and she loved all the fantastic Saturday
nights we spent in New York with Vito and Cathy and Rayleen and Cliff.
She loved matzah ball soup, Marie Belle chocolate, holiday
dinners at the Moonstruck Diner, anything dinners at the French Laundry, Girl
Scout cookies including the weird kind of nasty ones, real deal barbecue,
John’s Pizza whole pie not a slice, and every single thing at the Festival of
Pies.
She loved Die Hard, Die Hard 2, Die Hard: With a
Vengeance, Live Free or Die Hard. But A Good Day to Die Hard…eh…not so much.
She loved Sour Diesel, Grandaddy Purple, Jack Herer,
and especially Chem Four. I’ll be honest here: she just loved smoking weed. It
might have taken her 50 years to get around to it but, man alive, did she ever
become a pothead. You have never seen anyone enjoy the act of smoking a joint
more, announcing “Pot is great” while rolling the smoke around her tongue and
beaming. She loved trying to blow smoke rings even though she never managed to
do it.
She loved the Chicago Cubs, the Dallas Cowboys (especially
Emmitt Smith), Torvill and Dean, the Olympics in general, and became a
late-in-life boxing fan with a deep affection for Gennady Golovkin, Vasyl
Lomachenko, and Robert Guerrero. She never cared for Floyd Mayweather, though,
but that probably speaks well of her.
She loved decorating her home, even though she
didn’t have a real flair for it and relied too much on mirrors. She tried to
spruce up our bathroom by placing a mirror over the toilet but she put it at
such a low height that basically any man who happens to stand while using said
toilet is ambushed by a moment of the most intimate sort of self-reflection.
She loved everything I ever wrote even when I
didn’t.
She loved Maggie and Zoe and Smokey and Ivan and
Otto and Calvin and Alice. She loved every dog at ARF and she loved visiting
ARF just to see them.
She loved working at Synergy and Wells Fargo because
she loved the people she worked with, finding them to be a reliable source
of both joy and inspiration.
She loved her parents.
She loved her sisters.
She loved our brave, heroic children with a ferocity
that was almost frightening.
And for some reason, she loved me.
And now she’s gone. Even though, in a way, it
doesn’t feel like it.
One of the weirder things of life since Karen passed
has been a stubbornly persistent sense of her barely removed presence. A
feeling that she’s somewhere in the vicinity, maybe just around the
corner or in the other room. I feel her presence in the universe so keenly I
keep expecting her to walk in the door.
And I have given up trying to talk myself out of
this. That she’s not here. Because I think she hasn’t left. She is, in some
strange and wonderful way, still so very present. Her love endures where her
body does not. I see it in the faces of everyone here. I have experienced it
with every kind act you fine people have performed on behalf of my family over
the last three years. I live it every time I talk to our children, who are just
as delightfully idiosyncratic and flat-out amazing as she was.
We were married for a long time and Karen’s
love—enthusiastic, unflagging and limitless—buoyed me through every day. It
buoys me still. I feel that strong, certain love as surely now as I ever have. The
difference now is that I cannot return it. We cannot return it. That’s the
heartbreaking part.
But while my heart is broken it is somehow also full.
Full of love for her and full of the love she poured into me each day we were
together. So while I am torn with grief, what I feel most deeply within me is
gratitude.
Karen loved traveling so please help us send her off
in style as she departs on her most adventurous trip ever. Bring your stories, your
fondest memories, and maybe a generous supply of tissues. After we send Karen
off properly, we’ll decamp to Chez Coffey for foodstuffs, beverages, community,
and a liberal application of life-affirming hugs.
We'll be holding our celebration on Saturday, November 7 at 1 PM at Hull's Walnut Creek Chapel. The address is 1139 Saranap Avenue in scenic Walnut Creek, CA.
Hope to see you there!
P.S. In lieu of flowers, Karen has requested donations
be made in her name to Holden High School (link HERE).
With about half an hour of time to kill prior to auditions for The Crucible in high school, I was being typically loud and rambunctious and walking all around the auditorium on the arm rests of the seats. I passed this girl with curly hair and she asked me who I was and what the hell I was doing. We began to talk. I asked if she wanted to know a secret and when I shared it with her she told me she shared the same secret. I was 15 and she was 16.
That was how Karen and I met.
When devoted stoner Bart Berry still didn't know his lines three days before opening night, our director fired him. I was promoted from the smaller part of the feisty and crushed-by-stones Giles Corey to take over Bart's bigger role of John Hale. Karen offered to help me learn all those new lines over the few remaining nights before we opened. Every evening at her house we would go through the play over and over again, running lines for hours. We stopped only to make out the way high schoolers do, meaning: frequently and for a long time.
12 Years After High School
That was how Karen and I fell in love the first time.
Twelve years later, we reconnected when Karen and her roommate visited New York in early September. She was in the city for three days and we spent as much time together as possible. I got people to cover my dinner shifts at work and freed up all of those days. She eventually returned to Tucson and we racked up some major long distance bills. She came back to NY for four days that Halloween and we went to the parade and we marveled at how my boring ass temporary roommate managed to find a way to spend the whole evening with models while dressed as a cow.
That was how Karen and I fell in love the second time.
The following November I artlessly asked Karen if she wanted to get married during one of those epic long distance calls. On January 1 she joined me. we married in the summer, and we eventually moved into a four room railroad apartment in Chelsea. We were young, broke, crazy in love, and living in the greatest and most exciting place on this or any other planet. It was the best time of my life and it just kept going, at heart continuing that same initial conversation through 25 years of marriage, enriching it with the addition of our children's unique and brilliant voices a few years in.
And that was how Karen and I lived.
At 9:11 this evening the beating heart of my life and family finally stopped. She was attended by myself, her children, and her dearest friend, each one of us touching and stroking her, telling her how much we loved her. She craned her neck as if to see something distant and then she was gone.
I went for a bike ride this morning and my iPod greeted me with this Lavender Diamond song because the universe apparently likes a good joke. Enjoy, comrades!
Yesterday Karen slipped further away from us. Our dear friend Cliff (one of my two best men at our wedding) tacked a visit to our home onto the end of a very long day that included a red eye flight from Hawaii, moving into a temporary apartment, and a full day's work. He took Karen's hand and said her name and she opened her eyes and smiled. Cliff leaned over to kiss her but she was pulled back into the fog before his lips even reached her forehead. Later that night, Karen would whisper a slurred "hi" to Miranda. She hasn't spoken since.
The fog she is lost in now is no longer a pharmaceutical one. For the first time since hospice started she slept through the night without any middle of the night or early morning pain scares. She went longer without pain meds than she has in forever. It is clearly the disease keeping her down now. Still, it was, thankfully, a peaceful night.
Well, for her anyway. I had a pretty hard time falling asleep myself. Karen's hospital bed is right next to mine and her ongoing decline has left her with a ragged nightmare of a periodic wheeze. That death-rattle-with-training-wheels is actually just a wee bit more ghastly to sleep next to than you'd imagine. I'm pretty tired today but I've been running on fumes for at least a week now.
But it doesn't look like Karen will be keeping me up much longer (though I'm still not expecting to get a whole lot of sleep anytime soon, like, oh, the balance of 2015 at least). She goes long stretches without taking a breath and when she does it is that tortured rattling mess. She is uncommunicative and does not respond to our voices or anything else. Her fingers have turned blue.
I imagine we'll be making our final goodbyes relatively soon.
Well, the good news is that Karen did wake up again on Sunday (yesterday) and the day was sprinkled with fleeting windows of lucidity and engagement. These brief interactions with Karen met our new, woefully low criteria for what passes as a "good day" so we were pretty grateful for them and took advantage at every opportunity.
Well, maybe not all of us were grateful, at least not immediately. Dash made the mistake of wandering into our room to give his mom a hug and kiss only to get ambushed when Karen clutched his arm and began talking to him. I stopped folding laundry and excused myself from the room. About ten minutes later he emerged, clearly rattled and a little hoarse of voice. Throughout Karen's illness Dash has insulated himself from it as best he can, only occasionally allowing us to fill him in on the most basic details. He's been a skipping stone for the last three years. touching down as briefly as possible before jetting away until circumstance and the laws of nature force him to skim across the surface again. Yesterday that stone finally plunged into the water.
As for Miranda, she spent time with Karen going through old photo albums as they used to do. And at one point in the day, Miranda was able to rouse the rowdier side of Karen. Since her mother has been struggling mightily to remember things of late, Miranda's innocent query about whether she remembered something stirred something in Karen (who remembered, by the way). Thinking someone had been slandering her memory, my lovely wife announced, "Tell that bitch ass to shut her stupid mouth." So, clearly, not everything has changed for the worse.
And some things, such as, oh, let's say, ME, are just as terrible as always. There seems to be a bit of cosmic tomfoolery at play right now, with both my beloved Mets and her beloved but clearly doomed Cubs battling it out in the playoffs. Decorum would suggest that I should be rooting for the Chicago team but not only am I not, I am needling her about how the Mets will boot the Cubs back to Chi-town and baseball irrelevance in just a few more days. She knew what she was getting into all those years ago and I think she'd be disappointed and/or locked into some kind of Invasion of the Body Snatchers type panic if I acted any differently now. I will say in my defense that I have agreed to cheer on the Cubs if they make it to the Series. (But, man alive, I hope they don't because I could really use a Mets championship right about now).
Margaret, Karen's closest friend since high school, arrived late Saturday afternoon from her home in not-too-distant Chico. Margaret and Karen had discussed having her present at the end so I called her up Saturday and told her there was no time like the present. Having her here has been a tremendous help. As a respiratory therapist, Margaret has all kinds of nurse training and her input has been invaluable in terms of keeping Karen comfortable and shoring up the finer points of care that I would never have even considered. Between the two of us--abetted by Miranda's frequent assistance--we seem to have Karen pretty well taken care of.
That said, we are clearly facing an end date. Karen has not had any food or water for days and her kidneys clearly seem to be shutting down. Her body temperature cycles between hot and cool (she dipped down to 95.7 degrees yesterday afternoon). Our hospice team has told us there are days left, roughly a week or so from that last drink of water which puts us somewhere mid-week for the big wrap-up to our sorry little journey. Tragically, those windows of lucidity now seem to be largely shut. While there will probably be a handful of moments where Karen is communicative today, they will be brief and far between--she is clearly flagging now.
And those windows are unlikely to open again. At all. Karen's pain keeps escalating and she needs larger and larger doses of meds to control it. Starting tomorrow, we will be initiating palliative sedation. This is a deeper level of sedation that will alleviate her pain but will knock her out cold. She'll stay that way, probably slipping into a coma that we probably won't even recognize as such, until she dies.
About that palliative sedation...Karen was unable to talk to the doctor or nurse about it during their visits this morning. I had talked to her about it during the windows I had over the last couple of days. With Karen so frequently confused, I've adopted a policy of polling her multiple times on bigger issues like this, essentially compiling a number of "votes" to guide our choices to make sure she's understanding and I'm getting the message right. This is something she very strongly wanted--the episodes of pain that grip her and leave her writhing on her bed (the most movement she'll make in a day) have left her fearful of more.
But she couldn't make that request today. She wasn't engaged. So I told them to follow through. This is the first time I've had to make a medical call all on my own and I cannot tell you how relieved I was that I had the knowledge of what she wanted. Going forward, I'll need to rely on all those nightly conversations where we hashed out our cancer plans over and over again. I'll rely on that and my own sense of what she would want. I've known her 37 years, we've been married for 25. So I think I'll more than likely not totally screw it up. Still it's an incredibly intimidating responsibility.
Here's hoping I get it right.
Here's hoping we can see her home as peacefully as possible.
So much has changed in just the four days since I last updated this blog.
Karen has not had anything more than a few bites of food and a few sips of water since last Tuesday the 13th--for all intents and purposes she has stopped eating and drinking. She joined us for dinner (albeit she barely ate a thing) on Wednesday the 13th and since then she has not left her bed except to use the bathroom just a couple of times.
It all feels very End of Days. As I write this Karen is deeply asleep at around 12:30 PM after a kinda hellish night and I honestly don't know if she will wake and be able to interact with us ever again. We're just waiting to see. In a couple of hours she will be due for meds again and that usually stirs her from her slumber. I'm clearly no expert, but I'd guess there's a 50/50 chance she'll just keep sleeping right till the end.
Karen's pain has been an infuriatingly moving target. We have struggled to keep it at bay. Her dosages and dosage frequencies keep getting increased. With every increase we enjoy a day or two of substantial pain relief invariably followed by another day or so of waves of agony throughout her body, i.e. the pain is no longer localized in one or two spots like her head.
Part of the struggle has been getting her into a physically comfortable position. We have tried to maintain as normal a life as possible but last Thursday we had hospice deliver a hospital bed so that we can better find a posture that relieves her of pain and discomfort. Here's a big hearty THANK YOU to my videogaming career and the peerless Tetris skills it nurtured and developed which allowed me to reconfigure the bedroom just enough to allow her bed to fit next to mine.
And let me just share an aside as to how awful it is after 26 years of living together to refer to that sprawling, suddenly far too empty king bed as "mine" for the first time ever.
Most of the time Karen is sound asleep, her face slack and sagging in a way that I have never seen before. She trembles and jumps and jolts from a constant barrage of neurological misfires that at times are strong enough to briefly jar her awake. She almost immediately drifts off again, her brow furrowed with some unknowable worry. Her skin is dry and her arms are sleeved in delicate wrinkles like crepe paper. When she is awake, she generally is incapable of carrying on a conversation about much of anything unless it is to ask for pain meds. The pain is the only thing that reliably cuts through the fog these days.
But it's not limited just to physical pain. And that's not necessarily a bad thing.
Last night, Miranda and I were in my room with Karen and she was, as per the last few days, lost in the drugs and the ravages of her disease. She spoke but instead of truly talking she was only muttering "yeah" and "okay" over and over. It was too much for Miranda and she began to cry. I sat beside her and embraced her while she clutched her mother's hand. Through her tears, Miranda told Karen how much she loved her, how she knew she had always enjoyed her mother's unconditional support, and how much she was going to miss her. This was her goodbye (I'd said mine the night before). That cut through the fog like a knife and suddenly Karen was back. Her hands trembling and uncertain, Karen held Miranda's hand with one of her own and clumsily stroked her daughter's arm with the other. "I'm so sorry you have to go through this," she said more than once. It was the most she had spoken in 24 hours. She was, for about 85 seconds, completely present for her daughter. Then she slipped away again. My throat ached for about 20 minutes after thanks to how painfully choked up I was through all this.
Around 5AM Karen woke me to use the toilet. She was agitated and stressed but actually pretty communicative. Since she was up and it was roughly time, I gave her all her meds including her new big dose of methadone. I had to add the jumbo dose of dilaudid to that shortly after in an effort to dull the pain. One hours later she woke me in torment begging for more drugs. I checked with hospice and while they wanted me to wait until 7AM to give her another (but still early) dose of dilaudid I figured "Fuck it, it's close enough and she's in agony" and gave her another big syringe full of dilaudid. That did the trick and she slipped back into sleep.
She's been out cold since then. Her breathing is irregular and kind of shallow. From my very limited experience with this sort of thing--and I'd again like to remind you that I'm no expert so I could be way off on this--I imagine we are within days of the end of this nightmare. Which probably means we are within days of the start of a whole new nightmare.
Just two weeks ago Karen and I spent the better part of a late afternoon going through the hospice intake process with the intake rep. The three of us sat at the dining room table and Karen shuffled in to join us under her own power and did all of her own talking.
Things, as they say, have changed.
After a couple of mildly terrifying falls (including one in the bathroom where Karen eventually crawled out from the room in order to use our landline to call my cell so I'd come and help her) Karen made her peace with using the walker. That lasted a handful of days and now (after some more scary falls) we have transitioned to using the wheelchair to get her around the house since she no longer has the strength to support herself with the walker. She cannot rise from a sitting position and relies on me to lift her up. If she wants to sit up in bed, I have to cradle her in my arms and move her into position.
She has become so weak she cannot sit down with any control and has to be gently lowered into place. Her growing inability to manage on her own continues to cruelly strip away her independence and has reduced her to relying on me simply to go to the bathroom. I lift her up from our bed and she clutches me as best she can, hands trembling and fingers fluttering erratically on my shoulder obeying the orders of the leptomenigeal-powered misfires in her brain. We negotiate the admittedly awkward and tight passage to our bathroom through a protracted series of tentative, mincing steps that are remarkably akin to that of a toddler just learning to walk. When we reach the bathroom, I set her down, leave the room, and wait for her to call me to retrieve her and return her to bed. A journey that had taken two seconds and maybe five steps at best now requires minutes and dozens of footsteps to complete, provided, of course, she can make it all the way back and doesn't need me to muscle her the last few feet of the way.
Cognitively, she is doing pretty well. There are still stretches where she really cannot maintain a discussion but those instances are primarily the result of the increased dosages of pain meds she is taking. On days where she doesn't need a few buckets of opiods, she is fairly engaged in conversation although she tires quickly. Her fatigue and the nature of her disease do continue to chip away at this however, and even the best conversations involve a generously sized sort of Mad Libs component where you have to guess at words or ideas she can't quite find. When the drugs take over, however, a deep fog settles in, one that is almost impossible to penetrate. In these instances, we nod and smile and agree with whatever she says.
These last two weeks have been defined by a tremendous amount of farewells. Karen's entire family has, one at a time, trekked out here to visit one last time and to say goodbye and my own parents have just left after a few days here. All of our visits have been brief in order to accommodate a couple of off days in between so Karen can recover some strength. We have filled the gaps between visits with calls to old friends--her long-ago roommate from her days in Tucson before we reconnected, long time friends from our time in New York--sharing memories with them before ending the calls with heartfelt goodbyes and declarations of love.
To keep the good times rolling, Karen had her last rites performed just last Sunday. The reverend from her church and some parishioners with whom she is close came over to participate. While the ritual certainly has an unexpected upbeat element, it was hard to see it as much more than just another, more formalized sort of goodbye.
Yesterday was Miranda's 21st birthday so we did our usual family thing, with me making dinner based on Miranda's requests (meatloaf) and cake and presents after. There was laughter, some champagne toasting, and merriment all around. Karen was pretty heavily medicated due to the falls the day before so she was relatively quiet and instead seemed quite content to simply observe, her head pivoting like a tennis fan's as she gazed back and forth and back again with every utterance. Somewhere in there, the fog lifted and she tearily leaned over to me and said "I love you so much." That felt a lot like my goodbye.
Later, after my parents left, Karen had another sliver of cake and asked to be wheeled into the living room so she could watch us play Rock Band 4. The three of us fired up the Xbox and dove right in. Karen was situated just behind us and I'd glance back whenever I could. Half of the time she was lost in the fog but when she wasn't she was smiling and nodding along with the music, dreamily chewing her dessert. But then I'd turn back to follow the music and she'd be, in a way, gone and we'd just have to take it on faith that her support was still there behind us while we played on.
We're a week into hospice and it's been both a godsend and a nightmare. Without question, the relief Karen is getting from hospice care is a huge godsend. And most everything else connected with Karen's condition is a doggedly persistent nightmare. So....hooray?
We got the hospice process started last Monday and by Wednesday all our equipment (wheelchair, hospital bed table, nebulizer, etc.) was delivered along with a beefy supply of heavy duty painkillers and the like. With treatment no longer our goal, Karen was immediately relieved of the vast majority of the pill-taking that has dominated her life since she was diagnosed three years ago. Since most of the pills were vitamins and assorted drugs to offset chemo and various side effects, the absence of ongoing treatment renders them moot and thus we have removed them from her daily care routine. Not choking down more than a dozen pills a day is a huge boon. In their stead: a sizable dose of methadone, dilaudid for her "breakout" pain, dexamethasone to prevent swelling in her brain, and a laxative regimen that tastes ironically of ass to offset the probable constipation all these opiods could cause. But all these drugs are in liquid form which makes them much easier to take.
The losses are starting to pile up. Just before we started hospice care Karen was out with her sister, Liz, who was visiting to say her goodbyes. They stopped to get some frozen yogurt and while getting out of the car Karen's legs totally failed her. It was as if they weren't even there. So she fell, purposely lurching backward so she could control the fall better by sliding down the side of the vehicle. That was the day that Karen came to terms with the fact that she really needs a wheelchair to get around in public going forward. And it generated a Cronenberg sized dose of body horror to the whole situation, with Karen fearfully crying on my shoulder that night about her body's steady betrayal.
But I don't anticipate a whole lot of public outings in the future. Not just because the best lifespan estimate we are getting right now is mere "weeks" but because she's just not up to it. I know that there have been lots of blog posts that have mentioned how much time she spends in bed every day, but apparently there is always room for more. But not much at this point. She is in bed constantly. And that's another loss, one fueled in no small part by the drugs she is on, drugs which have been ratcheted up since yesterday's exceptionally ugly morning. After waking, Karen's usual drug cocktail couldn't get her pain under control and we had to call in hospice. The end result: a beefy increase to her thrice daily methadone doses as well as a big jump in dosage and frequency for the dilaudid (as needed). The good news is that her pain has subsided. The bad news is that the meds make her sleep and when she isn't sleeping she's very easily confused and can struggle to maintain a conversation.
That intellectual dimming or whatever caught up with Miranda the other night right after dinner. After another conversation with her mother got hopelessly tangled and lost, she broke down in tears in my bedroom as we talked. "It's like she's already gone," she sobbed. And I couldn't really argue against it--the truth is that Karen's once sharp mind is significantly dulled, blunted by drugs and three grueling years of cancer and chemo.
That said, I did tell Miranda that her mother is definitively still here and that she should take advantage of it while she still can. True, I said, she's being cruelly whittled away but try to look at it differently. Instead of seeing her vanish, think of her as being distilled, that the stripping away of everything else that defines/defined her leaves us with the essence of who she is: a woman that radiates with love whenever she lays eyes on her kids or this sorry typist. It's probably just the steroids and methadone, but, man alive, when she looks at us these days she positively glows.
But we don't know how much longer she'll be doing that. As mentioned previously, our best estimate right now is "weeks" and, frankly, I'm not so sure about that. The view from here is that she's declining but not terribly rapidly. But when she can talk about it, Karen confides that she feels "my systems shutting down" internally and that she thinks the end will come quickly. I'm inclined to defer to her perspective on that.
Symptom-wise, she's coping with a metric shit ton of things. Her hands flutter and tremble constantly, like she's trying to corral a pair of restless birds. She has difficulty swallowing. Her hands are numb and her left leg is, too. She zones out mid-conversation. Sleeping, her breathing is shallow and irregular and we've thought she's died about a million times due to long pauses between breaths. And there's the recurring pain (which we can control), the recurring nausea (which we can control), and the crushing sense of time running out (about which we can do nothing).
Personally speaking, I'm not having a great time. Caring for Karen is an unexpected, perverse joy, probably because it's the one thing that allows me the illusion of having some degree of agency in all this. I am still blindsided by glimpses of future loss: I read about a new fantasy novel series that Karen would love but there's no point in recommending it to her now since she hasn't the energy to read and never will again. In small ways the disease has already forced us to start living without her; for instance, I was struck the other night as we cleaned up after dinner that Karen was no longer part of the process since it was so hard for her to pitch in. So she's gone from that little sliver of our life. And so many others.
It's terrifically painful and the only person I truly want to talk to about it isn't really available. This disease can be tremendously isolating and this is the most at sea I've felt so far.
Finally, please allow me to quickly (and somewhat ashamedly) plug our Meal Trainthing to donate meals to our family. Eating is just about the last thing on our minds these days and Meal Train has been a tremendous help in keeping us fed while making dinner a blessedly worry-free event. If you're moved to help us out in any way, you could do a lot worse than clicking on this here Meal Train link and volunteering for a day to either bring food or have it delivered. We will repay you in pie someday.
To give you an idea of the state of things here at Chez Coffey, the original title for this posting was "Holy Shit, Am I Tired." But since that simultaneously both begins and ends the conversation and there's more to tell, I've opted for an equally direct title that presents me with the opportunity to cough up a series of random facts and whatevers.
But...holy shit, am I tired. So please forgive me if what follows is more disjointed than usual.
About that tiredness. No matter how much I sleep (and it's not all that much these days) or how well (and sleep is rarely sound) I am dragging my sorry ass through every day. Miranda and Dash have also been struggling to get adequate rest, with all of us slumbering fitfully and for shorter periods than we did before Karen's countdown clock began ticking so loudly. Karen, on the other hand, probably has a shot at the Sleeping Olympics should such a thing exist. She's logging somewhere between 12 to 14 hours a night and supplementing that with frequent and lengthy naps over the course of the day.
Despite all the sleep she is getting, Karen is utterly sapped for the majority of every day. It is shocking how quickly she has declined in the last week. The fatigue is the most obvious manifestation of her disease's progression--she is in the grip of crushing fatigue daily and it slaps you in the face with every unsteady shuffling stroll she makes from bedroom to kitchen and back again. Most of her day is spent in bed, with Karen rising chiefly to eat meals and to spend some small amount of time with us every evening.
There are indications of the leptomeningeal disease doing its dirty work beyond just the tiredness. Karen has trouble hearing, especially if there is background noise or a radio muddying up the audio environment. And most nights, during our increasingly more brief evening discussions, she'll ask if I hear some far off music or tone. I never do but I have to say, given the opportunity to select end-of-days symptoms to endure I think you could do a lot worse than ticking the box next to Randomly Experience Lovely Music.
If only that distant music were all she had to endure. Karen has begun drinking using both her hands to clutch her water glass since her hands tend to be numb and she now has trouble holding on to things. Her left foot has begun alternating between numb and achy and something in between, making her already troubled walking even more uncertain. She struggles for words at times and her short-term memory is spotty. And this morning the fallout from the whole brain radiation hit and most of her hair fell out in the shower. I cleaned big clumps of it from the drain before hosing myself off.
She and I both are experiencing recurring waves of delightful free-floating anxiety. We both are adept at recognizing it and white-knuckling our way through but it sure does make something like watching Fear the Walking Dead way more tense than it probably is--all that anxiety seizes on the lurking zombie uncertainty of that show and pumps up the dread to about three hundred times more than it could generate on its own.
I am now essentially on leave from work. While Karen and I initially entertained the thought that I could squeeze in just one more project before checking out to care for her, her deterioration has been breathtaking in terms of its acceleration. We had told my job that we thought I could make this last thing work but our reasoning was predicated on the old model of adapting to the new terrible normal that every new round of treatment introduced. But this time around, that new normal lasts for just a day, replaced the following morning with a newer, more terrible one. At this point, I don't feel comfortable leaving the house for more than the hour it takes for me to hit Crossfit. A multiple day work trip is clearly out of the question.
Right now, the biggest challenge we face is wrapping up all the paperwork. Karen and I had been very proactive getting things ready for the shift to hospice but we didn't count on having to contend with all sorts of insurance complications and other problems that have popped up in the aftermath of her dismissal from Wells Fargo. We hadn't anticipated that Karen's anchor leg and all it entailed would coincide with this bureaucratic clusterfuck. My days have been filled with notaries, long excruciating phone calls, a crazy assortment of byzantine forms, and all kinds of follow-up to make sure that the Karen and our family make it through these next several weeks (and beyond) without having to survive a series of financial neutron bombs on top of it.
It is, to be blunt, a terrible grind. Happily, the Meal Train we set up has been a godsend. Not having to worry about shopping for and preparing dinner every night is a huge relief to me...and to the family, which was getting pretty tired of my half-assed meal efforts propped up by too frequent takeout from too few restaurants. There is actual variety in our diet again and we look forward to seeing what is on our menu every evening--it is truly a highlight if indeed not the highlight of every day. Actually, that's not true: seeing the people bringing the food is the unquestioned highlight of our days. (And if all this has made piqued your curiosity you can check out our Meal Train right here).
This afternoon I began the hospice intake procedure. Tomorrow a nurse will visit to determine our needs. Once we get the official sign-off from Dr. Sherman on Friday, we will officially commence hospice and then the end will be a whole lot nigh-er than it's ever been. While we are surprised by how quickly things are progressing, we are also grateful. No one wants a drawn-out, torturous end. And it isn't looking like it's going to go that way. We'd cheer about that if we weren't all so terribly sad.
A little over a week into our new countdown clock existence and both everything and nothing has changed. In practical terms, our days are nearly identical to what they were prior to all this business: doctor appointments, medication schedules, pain management, and so on. But there have been changes, mostly incremental but they all speak to the stark new landscape we are now negotiating.
We met with both of our main doctors last week, Dr. Sherman and Dr. Moini, and Karen let them know that she was done with treatment. They both accepted and understood this in the most unremarkable way possible. While I had feared that Sherman would push back forcefully against Karen's decision to try to grab the least objectionable demise she could given her new diagnosis, he was fully supportive. The ease with which he--and Moini and all the chemo nurses and, frankly, our family members--accepted Karen's acceptance of this journey's imminent end spoke volumes about how dire the situation has become and how appropriate this choice is in light of it. As gun-shy as I was about possibly having to defend Karen's decision, there was a hope in the back of my mind that Sherman or someone would stop it, that there was something more to do, something that wouldn't, well, hurt.
But that didn't happen. Rather, all of our medical personnel not only accepted our transition to an end game posture, they talked about it as a good thing. They, like Karen, focused on what is to be gained: a handful of weeks spent with her kids, her dogs, her n'er-do-well spouse, and whatever family could make the trip out over the next few weeks. Every one of them spoke of this as if it were an excellent outcome. And it probably is, all things considered, but it is challenging to be as upbeat about it as they were.
As for the aforementioned changes, the bulk of them are subtle though a handful (I had to rent a wheelchair last week because Karen doesn't have the strength to walk more than a few dozen steps at a time) are a smidge more in your face. More often than not, the inevitable conclusion of our cancer cruise finds subtle new ways to insinuate itself into our lives--three years in and we still get blindsided in fresh and unexpected ways. For instance, the other day I was trying to clear some space on our jam-packed DVR and there was a pile of Masters of Sex episodes (basically, the entire current season) gobbling up a meaty slab of storage space. This has been a show we always get around to, not something we watch right away, i.e. it's no Game of Thrones. My deliberations about what to do with the lot was jarred by a wholly unexpected criterion that slipped in sideways: all things considered, there was no way we were going to watch these. Ever. My stomach knotted and my eyes watered with the realization. And then I deleted the lot of them so I wouldn't have to look at them and think about it again.
Karen's experience, as she's described it, is a lot like the end of a Get Smart episode, with a series of doors slamming shut behind her, relentlessly closing off experiences and hopes and dreams and small inconsequential daily activities that seem so much more consequential now. Every day there is a sense of something else being lost forever without any snazzy shoe phones to help take the sting out. If our experience with cancer has been defined by anything, it has been defined by the way the disease has inexorably taken a series of things away from us. It is a litany of loss, with the disease ruthlessly stripping away the things large and small that, in aggregate, help define a life, a person. There are few lasting victories.
But there are some. The first thing we lost to cancer was Einstein on the Beach, a four and a half hour minimalist opera without an intermission that that is just as challenging to see as it sounds. Three years ago, prior to Karen's diagnosis, I got us tickets and we were both incredibly excited to see it. But then Karen developed the "pneumonia" that we would find out in a month was cancer and, long story short, she couldn't make it and I went alone. Denied the opportunity to share and discuss it with her, it was almost as if it didn't happen.
Miranda has turned that around. With no DVDs or anything available in North America, Miranda (unbidden and on her own volition) somehow contacted Philip Glass' agent and, another long story short, wound up corresponding with a French director who had been working on a documentary of the production. He burned her a copy and they arrived mid-week. So fuck you, cancer, we're taking that one back.
Let's start with a confession: I kinda lied in that last post.
The truth is that the whole "Karen is at 60%" assertion was based on numbers we had discussed at least two weeks prior to the posting. I didn't feel it was appropriate to unilaterally change that figure so I went with it but the reality was Karen was more 25% to 30% of her cancer-impacted self when I wrote that. Starting from there, the rest makes a lot more sense.
Sorry, Robert Mitchum--Elliot Gould is the Coffey family Marlowe.
So, last week the intensity of Karen's headaches and nausea ratcheted up tremendously. As the week wore on, she ate less and less and struggled to find even a sliver of relief. Late Friday night, she was atypically awake, slitty-eyed on weed and painkillers but unable to drift off because of the pain in her head and the churning in her gut. Early-ish Saturday, I drove her to a shockingly empty ER where she was admitted immediately. The ER staff got her pain and nausea under control and started pumping what would turn out to be about two liters of fluid into her.
Because of Karen's situation and her medical history, the MRI scheduled for the following Monday was moved up to right fucking now and within a few hours a very nice and visibly distressed ER doctor confirmed that the MRI looked bad for her brain. It wasn't exactly a surprise--clearly something was seriously wrong. We exchanged knowing looks and then tried to reassure the doctor that it was all right. Karen was admitted to the hospital soon after.
There were additional tests the next few days after they got her symptoms more under control: a CT scan from the neck down, a series of spinal MRI's, and eventually even a Lumbar Puncture (i.e. a spinal tap). Somewhere in there, Dr. Massulo, one of our radiation oncologists, visited to fill us in on what the tests revealed. In a soft and sleepy, Tony Shaloub in Galaxy Quest tone of voice he informed us what he had was a "terrible diagnosis." Karen had developed leptomeningeal metastases.
That was the moment we found out what was going to kill her.
Bane and Batman are better at hugs than me.
Dr. Massulo's somber tone was echoed the next day when I ran into Dr. Moini (our main radiation oncologist) on my way to get a dismal slab of Earth's worst ziti from the hospital cafeteria. She nodded empathetically and then tried to pat me comfortingly on the shoulder. But she was at kind of an off angle and her arm was kind of oddly open in a way and she missed my shoulder proper and, you know, she usually hugs Karen like a hug-crazy hugging demon every time we see her and so I thought she was trying to hug me and, no surprise, I'm really a fairly stingy and judicious hugger so I was kind of panicked and didn't know what to do but it seemed weird and clearly rude to rebuff her so I hugged her back and then I realized "Oh shit, she clearly has no desire to hug me!" but by then we were tangled and trapped in this extremely awkward embrace where we both desperately wanted to get away from the other person but were kind of maintaining it to spare each of us embarrassment.
So, just in case you were wondering, I still cannot read social cues.
Karen was released from the hospital after five days. She had that spinal tap the morning of her departure and in matter of hours the pain was turned up to 11 (see what I did there?!). Apparently when you drain some of the spine juice out of you there's no longer enough for the brain to float so instead it kind of sags in your skull. "I've never been so aware of my brain as separate from my head before as now," Karen shared in between long luxurious draws on her vaporizer.
The pain persisted into the next day (and beyond, for that matter, but it should clear up in a couple days). It was so crippling that when we went to our follow-up appointment with Dr. Moini--whose hand I would firmly shake immediately upon seeing her--that Karen only made it a few steps into the office before she doubled over vomiting and clutching her head. We called off the brain mapping for that day and rescheduled it for this coming Tuesday.
The day after that (just yesterday) we saw our primary oncologist, Dr. Sherman and discussed options. Karen pushed for clarity on a couple of important points. Yes, the doctor confirmed, the countdown clock had officially started ticking. Yes, he said, the leptomeningeal disease was ultimately going to be culprit. And yes, the focus now was on managing her death as opposed to extending her life.
Yeah, no shit, Mr. Road Sign.
It's weird, you know. We saw this coming a mile away. We had roughly three years of time to brace for a crushing impact we knew was inevitable. And it still managed to take us by surprise. It was completely predictable and it still got us off-guard.
We left Sherman's office certain of only one thing: Karen would go ahead with full brain radiation. Along with the leptomeningeal disease, the new MRI revealed another trio of brain lesions. We opted to go with the radiation (10 treatment total) in order to knock those bastards back and, most importantly, to get Karen some relief from the nausea and headaches the new mets were causing. The purpose here, is essentially palliative.
Less clear was the way forward. We had discussed a number of possible options at Sherman's but no commitments had been made. As the evening wore on, Karen let me and the kids know that she does not want to undergo any more procedures--this took out the option that involved installing a shunt on her head to deliver meds directly into her spinal fluid. She also does not want to endure any more chemo and/or the attendant side effects. That took out most everything else. We haven't told the doctor yet.
But we're telling you, our friends and our family.
What this all means is that once the radiation ends, Karen is almost certain to begin hospice care. We say "almost certain" just in case some as yet unknown golden unicorn of a treatment appears with no side effects and whatnot, well, she's up for that. But since that is about as likely as me learning how and when to hug people, hospice seems like the safe bet.
Because we haven't informed Sherman of this as of yet, we don't have a solid, clear idea of a timeline but a quick and miserable googling of leptomeningeal cancer suggests that we can expect her to last just 4-6 weeks after treatment is ended. A painful lingering does not seem to be in the cards.
Clearly, this is all terrible news but we really want to emphasize that for us--and especially for Karen--this is actually kinda good news. While swift and merciless, the death she now faces should be relatively painless, at least compared to the possibility of drowning in slow motion as her lungs fill with tumors. There will be plenty of awful to go around, with possible strokes and seizures and all sorts of neurological fallout, but she should be spared suffering. She will die at home, with her family and her dogs nearby. This, sadly, is the best we can hope for and here's hoping it plays out the way we desperately want it to.
Thanks to you all for your support. It has meant and continues to mean the world to to Karen, to myself, and to our family. Please reach out to me if you would like to see or talk to Karen in the days ahead and we will do our level best to make it happen. I promise to make more regular updates to this blog so that people are not in the dark.
And when my throat tightens and my heart sinks I remind myself that the pain of missing her reflects how deeply she loved me and I her. I try to focus on that, on the love we had and the love I still have in my life, with my kids, with my tremendous friends.
