(This Is) No Place Like Home

Throne for a loop

This may be something of an odd update, but everything in Life feels pretty freaking odd to me right now so what the heck? We’re closing in on week one of my living here at the hospital with Kathy owing to Covid restrictions, and I’m put in mind of Jack Nicholson’s stunned disbelief in “One Flew Over The Cuckoo’s Nest” when he learns that his fellow asylum inmates aren’t prisoners but are there voluntarily.

It’s definitely not comfortable here for anyone, but everyone is doing their best to make things as good as possible. And I don’t want to make anyone jealous, but I get complimentary hospital food. If I’m in the mood for free oatmeal in the morning, all I have to do is snap my fingers and wait about an hour and a half for it to be delivered.  Score!

As far as actual health news goes, let me try to cut and paste from some personal letters I’ve sent recently. I’m writing this on an iPad and any labor-saving tricks I can find are being put into play...

WEDS 1/18

I forget if I’ve already said all of this (brain fog!) but Kathy has just been started on a 10 day regimen of chemo - 7 kinds! Four intravenous, two injected into her skull port, and one pill. The idea is to give her milder chemo (but a broader spectrum) for a longer time - twice as long as any time before - to try to finally get her into remission. Given the length of chemo and some time to recover from it before a bone marrow test, it will probably be 3 weeks before we’ll know if it worked or not.

Today we asked Kathy’s oncologist if we were still on the path for a stem cell transplant and he confirmed that it’s still the goal, but he said “I won’t lie, at this point it’s a long shot.” Which isn’t what we most want to hear, but is still better than NO shot. At present, if it doesn’t work, we don’t know if there are any promising remaining paths for treatment. So for now we have to take it day by day and keep hoping and praying that things will go our way. And make no mistake, that’s still a possibility. Especially with additional hopes and prayers paving the way.

Daughter J and I are doing fine in a “not at all fine, really, but keeping it together at least half the time” sort of way. Her recovery from surgery is going great and she’s had all of her staples pulled out, much like a surgical Playmate of the Month. And while I’m still feeling the floors shiver and shake beneath me, I haven’t fallen over and nothing has gotten worse.  Oh sure, my doctor wants me to get a CAT scan, but I can’t really do that while here in covid lockdown. If things get too weird, I will reluctantly seek treatment.

Since that writing my condition remains the same. Usually no more than a mild inconvenience with only the occasional hint that I’m standing atop the San Andreas fault. And speaking of “faults,” we still don’t know who deserves the credit for this one on...

Thursday 1/20

Today’s main excitement (there are random smaller terrors throughout the days) was when Kathy was getting an intravenous infusion of a pus-colored antifungal medication which she needs steroids to tolerate (otherwise she gets awful back pain). But today they DIDN’T give steroids first, perhaps hoping to help with the 40 pounds of edema Kathy has put on in the past several weeks. And she didn’t get a backache!

Instead, she had an anaphylactic reaction and her throat seized shut. It started with labored breathing, then a little wheezing, then a LOT of wheezing and a feeling like something was wedged in her throat. I watched her blood oxygen numbers quickly tick down into the low 80’s while Kathy understandably and appropriately was having a panic attack. Help came quickly, though I think I was the first one who put together the steroid-antifungal-anaphylaxsis scenario, which hopefully sped up the treatment time. She was administered steroids, oxygen, and then had a respiratory therapist come in to give her medicated mist to inhale. After which (a couple of hours) she was fine, but we all had a bunch of adrenalin to process.

Since then there have been no immediate emergencies, but days and nights are a blur of tests, infusions, pills and alarms. Pee and poop (which, during chemo, are roughly as toxic as the acid blood of the creatures in ALIEN) need considerable management and a minimum of modesty. 

Kathy and I are glad to be with each other, but the days don’t fly by. No external entertainment is either appropriate or interesting, though we sometimes like to put nature scenes underscored with new age music on the TV just to have something to look at.

And Daughter J has to carry this emotional weight on her own just now. The people she could turn to either have covid, have been exposed to covid, or simply don’t want to risk catching covid.

(ASIDE: YOU ARE THERE! I’m writing this in the near pitch dark of the hospital room, the only light being the glow of this iPad and innumerable little screens and indicators scattered about the room. Kathy is desperately trying to get some sleep, but every time she moves her tube-riddled arm a tiny amount (technically 1.0 RCH) an alarm starts beeping warning that there is a “downstream occlusion” and whatever life-giving medicine is supposed to be pumping ain’t pumping. So you call the nurse who says “we’ll be right in” and nothing happens. Well, not NOTHING - every 3 minutes the warning beeps double in volume, ultimately reaching ear-bleed territory. We easily waited 5-10 minutes just now, and Kathy’s elusive and important sleep isn’t coming anytime soon. This will continue all night.)

In fairness, for sticking with this post you also deserve a little humor, so let me try. 

I have washed and Purelled my hands so frequently that my iPad no longer recognizes my fingerprints. Nor would the cops, which makes this seem like a dandy time for me to go on a crime spree.

On a related note, a relative of mine offered to sneak a bottle of medicinal liquor to me, but then his wife looked up the penalties. Apparently a bottle of smuggled booze is considered a life-threatening substance or device brought into a public place, and you will be instantly jailed under suspicion of terrorism. Unless you just hurl the bottle through a glass window while yelling “Black Velvet Matters!” (Black Velvet is the bourbon-ish inbred cousin of Clan MacGregor.)