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.