Roomatism

It's Monday afternoon as I write this and Kathy and I have had a decent if low-key morning following a decent if low-key weekend. Kathy mostly naps, although she alternately makes a compelling argument that she's never actually sleeping. All I know is that we're not making enough noise in this room for the neighbors to complain.

Daughter J visited multiple times over the past several days, Kathy is in no particular distress (though is visibly weakening day by day), and I have discovered that the Karmic price of stealing Kathy's uneaten "mehanical-soft" institutional food is a constantly roiling gut and copious, sonorous flatulence.

Speaking of which, that concert I co-wrote that played in Fort Worth last weekend was a big hit, and it actually contains an ode to flatulence called "The Toot Suite."  Why a world class symphony was playing such a proposterous thing is a story for another day. Because eventually there WILL be another day and what I hope are pretty good and unexpected stories from my scarlet past. (I swear I just imagined M. Mitchell Marmel saying "Frankly, Stilton, we don't give a damn" and posting a laughing emoji).

Kathy asked today if I'd been posting to Johnny Optimism and I told her that Johnny had been on hiatus since the new year came in, but that he'd be coming back in the future because that little guy and his friends help me drain a lot of bile from my soul. Plus rueful laughter is halfway to laughter of the kind that doesn't scare people and make them move away from you. Kathy understands Johnny and what he means to me, and approves of the mission continuing. Plus, it turns out that there are a lot of nurses who like sick jokes.

I titled this post "Roomatism" because I'm unsure whether I'm going to eventually leave this facility with a horrible fear of being closed in a room, or a horrible fear of emerging from a room. Currently, I really REALLY want to spend time outside. Although it sounds like this coming weekend that might be a good way to freeze to death in North Dallas. 

And speaking of being indoors and outdoors, I no longer have any idea (did anyone, ever?) what to think about Covid protocols. I guess I'll keep avoiding social occasions where people are unmasked, "social occasions" being defined as being with anyone other than my daughter. Mind you, I'd LIKE some human interaction and support, but I just can't get that from masked people. Maybe I'll learn how to make zoom calls. Whee.

I think I recently saw an article in which the CDC was saying the best way to keep from getting Omicron is to avoid groups of unvaccinated people. But last time I gave a rat's ass, I seem to recall that both vaccinated and unvaccinated people could catch, carry, and transmit the virus. Which would sort of make tht CDC advice unscientific bullshit, right? I don't know...and medical science and I are going to have a pretty chilly relationship for awhile anyway.

Not that medical science would want to cuddle up to me anyway; I think today marks officially two weeks since I've had a shower. I changed my shirt once, though, so I'm pretty sure I'm good. And here's a time-saving lifehack I've developed: just sleep in your damn clothes - in the morning you're ready to go!

Well, I'm not fooling anyone that this is anything other than rambling just as an excuse to spend time with you good people, and raise the virtual population inside this room. I share your comments with Kathy and they all mean a lot to us. Keep 'em coming, keep us in your thoughts and prayers and, if you encounter me in the hall here, keep your distance - seriously, two weeks without a shower. Yeesh.

PS: A special shout-out to Mary the moonlight power walker (Kathy says "hi!")

Hospissed

 For those of you who have taken enough of a beating, let me give you absolute permission to just skip reading this blog for awhile (if you promise to come back!) because for now, this space is just going to be about venting to keep me from going mad (I was already crazy, but in a lovable way).

In much the same way a robin heralds the return of Spring, we can tell it's Monday here in Hospice Acres because we saw a white staff member. Like the swallows to Capistrano, management returns on Mondays. The boss dropped in to see how we were doing, we mentioned still being in a total state of ignorance, the half-hour waits when the call button is pushed, the lack of supplies and, because I ran out of tact a long time ago, I asked why the whole frigging staff is Jamaican.

This was laughed off and I was assured they aren't ALL Jamaican, although he conceded that it's "quite an international group." I explained that between their accents and my hearing aids, there was no real communication. "I have bad hearing too," said the manager. "Yes, it's hard."

He then explained that we're lucky that there are employees at all in this job environment, when so many have found it profitable just to stay home and wait for the money to roll in.

We also saw the perky white social worker today who popped in just long enough to ask if we'd be "free" (uh, yeah) at 2 o'clock tomorrow to discuss our "care plan" and get basic orientation. This will be on day 5 of our stay. Anyone besides me see the inherent flaw in that timing?

But theoretically, several representatives of our hospice team (a different agency) will drop in today to offer us support, counseling, and guidance. I'd say there's maybe a 50% chance anyone shows, and no more than a 10% chance that we'll be any more supported, counseled, or guided when they leave.

The space we're in is essentially a dorm room with two remarkably cheap, noisy, and uncomfortable hospital beds. There are no trappings which would suggest that this is in any way a medical facility. I will occasionally leave the room and slalom my way through the dementia patients in wheelchairs (and God bless the poor souls) to get a tepid cup of coffee. Or visit the trunk of my car in search of a missing mouthful of Clan MacDesperation.

Kathy still can't speak because of her mouth sores and a universe which apparently really, really hates us. She's not sleeping well, and it doesn't help that she/we know the supposed end game but don't know what to look for now, what to expect in the future, or know how the blow(s) will be cushioned. But yeah, orientation on day 5 will be fine, thanks.

All of this being said, I doubt that other such facilities are better and I believe that many would be even worse. I don't think the home hospice we considered is likely an option at this point.

We're together, which is what's crucially important, and hopefully Daughter J can visit again today or tomorrow (after yesterday's emotional visit, she didn't sleep much last night). The bond between the three of us is about the only tangible thing we have left, so it's a good thing it's such a strong one.

Sorry for the doom and gloom, but please know that your comments, support, and prayers continue to lift us up. And to end on what will need to be considered a positive note, the Fort Worth Symphony Orchestra will be dedicating this weekend's concert to Kathy, in part because I co-wrote it, and in larger part that I could never have survived as a creative writer if Kathy hadn't been the breadwinner (in shitty jobs) until I got my professional legs under me.

Updates and trips to the trunk of my car as necessary.

Hard Times

I really don’t want to write this update, but I owe it to all of you. Kathy’s bone marrow biopsy results came back and this fourth brutal round of chemo essentially did nothing. Well, nothing to the leukemia - it pretty much destroyed all of Kathy’s good blood products.

I could make a long narrative of this, but won’t. There is no longer a medical possibility of a cure for Kathy. All she could do is sign up for an unending cycle of chemo after chemo with no discernible point - so that’s not what we’re doing. Kathy will be moving to hospice where AML patients tend not to last very long.

Over the course of the day we’ve gotten the crushingly bad news from the doctor, met with a hospital caseworker, then met with a hospice representative, and more or less finalized a location where Kathy will be going soon. Maybe even Thursday, except the roads in Dallas will be covered with dangerous ice, and we’re not feeling wildly lucky when it comes to taking risks at the moment.

The hospice facility is said to be excellent, and we’re getting a so-called “semi-private room” which will actually be fully private, with me occupying the second bed. It will be close to home, so Daughter J and her Mom can finally be together for awhile.

And because Life just can’t get enough of kicking us in the balls, Kathy’s mouth is still full of sores that keep her from being able to talk more than a few words at a time. We have everything to talk about, very little time to do it...and mouth ulcers.

Kathy has made her peace with leaving. I am in no way at peace with losing her.

Prayers for our family will be greatly appreciated, as always. And thank you for being here for us.

-Stilton