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.