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

Waits and Measures

They say that “time flies when you’re having fun” and I can assure you with great confidence that the obverse is also true: “time drags like a drugged snail pulling an anvil uphill when you’re having no fun whatsoever and help help help get us the hell out of here.” And what that phrase lacks in style, it makes up for in veritas.

Kathy is doing "well" in the sense that she can and has felt even worse, but that's about as high as the bar goes. It's been two weeks since she completed (most of) this round of chemo, but the "good" blood numbers aren't coming back yet. White Blood Cells: 0. ANC (a healing factor in the blood): 0. Her platelets are very low and all borrowed - she gets a bag or two of them every day. After her previous chemo session, her platelets didn’t come back at ALL, which is what landed us in the hospital nearly two months ago.

She's very weak, though did a little moving around out of bed for several days now. A couple of jaunts from the bed to the door and back, and then a walk around the bed to sit in a chair for an hour (and yes, sitting in a chair is hard and exhausting).

Her doctor came by Wednesday morning and answered a few questions more directly than usual. He said her odds of actual recovery are "very low. Not zero but very low." Additionally, when we ask if she's still a possible candidate for a stem cell treatment, we get a real "it's not impossible, but it's not likely" vibe.

Everything rides on the blood numbers at this point. When Kathy's good blood cells start reproducing again, the goal will be to get her healthy and strong enough to go home for a couple of weeks (perhaps after a short stay in a rehab facility here in the same hospital), after which she'd come in for another 5 day hospital stay and chemo in hopes of finally getting into remission. After that? Who knows. Remission is an unpredictable thing which could last a year or more or just a couple of weeks. On the other hand, if it's the bad blood cells (called "blasts") that start coming back in earnest over the next few days, then it's likely that we'll be looking at palliative care.

Which, it turns out, simply means managing and slowing symptoms rather than trying to cure the disease. I'd always assumed that palliative care simply meant giving a dying person opiates to ease their passing. And that can be a thing too, of course, but it's not what we're talking about at this time. We hope.

A vaguely positive development is that I’ve established somewhat better lines of communication with the doctors and hospital staff to try to get some freaking questions answered. And I also took the opportunity to wage a few complaints about issues you’ve already seen documented here. Good idea? Bad idea? I genuinely can’t tell the difference anymore.

Everything now rests on seeing what Kathy's bone marrow does when it starts to recover (which gets harder and harder to do after each round of chemo - and she's had four major ones now - which is why this current wait is so agonizingly slow). As always, your hopes and prayers for those blood numbers, Kathy, and our little family mean the world to us.

FRIDAY MORNING UPDATE

The doctor just made his mini-visit to the room. He said another bone marrow test will be done on Monday, the results of which will determine whether continuing on this treatment path has any point. So yeah, our weekend is off to a flying start.

HITTING MY CRAZY BONE

It only seems fair that I try to find and share a little humor with you, though the pickings around here are slim and mostly weird. Still...

• When talking to our doctor’s second-in-command about communication issues, I realized that whenever I told her something the doctor had said to us, I was doing it with his Indian accent. I apologized when I realized I was doing it; she kindly said I did it very well. Which is true. Maybe I should grab a stethoscope and start giving second opinions around here.

• A funny thing I’ve noticed is that if you walk to your car carrying a cardboard Starbucks cup and shortly thereafter walk back from the car carrying the same cup, nobody wonders if it was only empty on the way to the car.

• It turns out there are no movies or TV shows that you really want to watch when Life gets this scary and crappy. So in the evening, Kathy and I turn on Youtube videos (mirrored to the television) with beautiful nature scenes and relaxing music. Which is pretty soothing until you remember Edward G. Robinson’s final scene in “Soylent Green.”

• The difference between a Duck Call and a Nurse Call is that sometimes ducks come.