An Artless Update

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.

Einstein Strikes Back!

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.

We watched the first of the three discs already.

It is glorious.

The Long Goodbye

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.