Karen Coffey’s Bon Voyage Spectacular

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).

9:11 PM, 10/21/15

CHS 1979 Production of Li'l Abner

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.

Packing for Valinor

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.

The Home Stretch

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.

An Avalanche of Shit

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.

The Goodbye Girl

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.

Slow Fade

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 Train thing 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.