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.

Close, But...

 As has so often been the case lately, whatever results we expected to get from Kathy's bone marrow biopsy turned out to be something else. We think. Sort of.

As you may recall, the point of the agonizingly slow test was to see if all the cancer cells were gone from Kathy's marrow ("You may be a winner!") or whether they were still there in significant number ("We've got lovely parting gifts for you.")

After days of being told "today's the day" to get results, it actually happened today (Friday). "If we look at your sample through the microscope," said the doctor, "we can find no visible cancer." Hooray, right?! "But..."

Damn!

"But when we use sensitive genetic tests we can tell there's still a little bit in there. For now we will let your blood cells begin to grow again. If the good white cells come back strongly, then we will continue treatment. If the bad cells come back then we will need to have A Discussion."

Additionally, to be considered for a stem cell transplant Kathy will have to achieve remission (ZERO cancer) and stay in remission for at least two months. So all in all, the long-awaited test results only told us that there's a lot more waiting and uncertainty that has to happen here at the hospital before we know anything at all.

The news hit us pretty hard; we were already exhausted AND keyed-up. "More of this" wasn't what we most hoped for but it clearly beats at least one other alternative. So we're taking deep breaths and continuing the fight.

Despite being weak, Kathy outdid herself with physical exercise today (what she accomplished wouldn't sound impressive unless you knew what she's coming back from). Solid food? Oh yeah - take THAT cottage cheese and tropical fruit cup! The woman is a superhero.

Still, motivation can be hard to come by and a little unequivocally good news would go a long way for us about now. Personally, tonight I'll be praying that a conversation tomorrow begins: "Good news! We totally misread those finicky genetic tests!"

DEMOTIVATIONAL SPEAKER

When Kathy was struggling with her physical therapy exercises today, she grew frustrated about how little she felt she was accomplishing. Her nurse decided to cheer her up by saying: "It's like my professor in Nursing School said: How does an elephant eat an apple? One bite at a time!"

"One bite at a time," agreed Kathy.

"Uh, pardon me," said the least necessary man in the room (me). "But that's not how an elephant eats an apple! An elephant eats the whole thing at once! He pops it in, takes one crunch and it's done. An elephant couldn't take a bite out of an apple if he wanted to!"

"I never thought about that," admitted the nurse. "I've been using that saying for years! When my stepdaughter became a nurse, I taught HER that elephants eat apples one bite at a time."

"Well they don't."

And such is the manner in which I spread enlightenment and joy to others. Whether they want it or not.

Mental Hellth

For those who want to read no farther (and I can't blame you), let me give you the Cliff's Notes version of today's post: Kathy and I are going through new levels of Hell I'd never dreamed of, but hope still exists. Keep praying.

I begin with an email I sent to family and friends on Saturday night...

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SATURDAY

I left everyone at a scary cliffhanger with my previous update so I’m following up with this one that says, essentially, we’re still hanging on to that cliff.

My brain is mush now, so pardon me if I refer to things I’ve never mentioned or whatever. In recent updates, I think I mentioned that something had gone wrong in Kathy’s brain causing her to become non-verbal, disconnected from the world, and reacting dramatically to the unexpected touch. The next day (and especially night - I genuinely don’t know if she sleeps now) that upgraded to her saying “Uh-huh, yes” hundreds of times as if listening to a phone call. The next day and all night, she still couldn’t react to anyone but was singing nonsense songs. An improvement.

A CT scan didn’t show anything amiss. An MRI scan showed some likely swelling on the left side of the brain - cause unknown, but suspected to be a medication issue. The most likely culprit wasn’t even chemo but rather a powerful antiviral Kathy was being given intravenously because that’s standard procedure when chemo has destroyed (by design) someone's immune system. The next day (I think) which was yesterday, she had improved even more. A lot. She knew her name, knew where she was and was able to carry on actual (albeit limited) conversations with the people who came to the room to give her an EEG (brainwave) test. Her doctor was quite impressed with her progress and shared that Kathy’s blood numbers are currently looking good.  However, she was becoming aware enough to also realize how confused she still was, and couldn’t understand that there had been missing days for her. She was also seeing things, though nothing too major for a brain hard at work repairing itself. Still, she started becoming agitated (not badly, but a bit) and it seemed a good time to call for some medication to help her rest (she hadn’t slept the previous night, having sung constantly all night). 

A quick aside: we’ve now met nurses who are strong in every conceivable sense, smart, and angels of mercy. We’ve also met some who are dit-brains. On this particular occasion, we got the latter. She said that the usual tranquilizer of choice - Ativan - was forbidden by the doctor but he had authorized morphine or "Haladol." Morphine certainly seemed like overkill, so we thought that "Haladol" would be an okay tranquilizer. I can not begin to tell you how wrong we were.

When Kathy had Haldol (the nurse didn't even have the name right) injected into her line, she immediately had a panic reaction and labored breathing - not from allergic shock, but because of what the drug was doing to her. It was like she was plunging from a mental cliff.

 “Oh yeah,” says the nurse. “It relaxes most people but it makes some people a lot worse.” Well THAT would have been a handy warning 5 minutes earlier. And it turns out that Haldol isn’t a tranquilizer at all - it’s a powerful anti-psychotic given to people having a psychotic episode. But for other people, it puts them into a psychotic state. And that’s what happened here. 

I’m not going to go into details but it was bad. Horrible. Kathy developed off-the-charts paranoia and thought that I was at the center of a plot to murder her, everyone was in on it, and she was angry and physical about showing it. And more that I just won't ever talk about. By the way, at this point I still had NO idea what Haldol really was or what was really going on. “How long does it last?!” I asked. “About 12 hours” I was told. But that was wrong - because she should have been coming down about midnight, and didn’t. Not even barely.

By 3 a.m. I just couldn’t take it anymore and had to leave the room, having not really slept in about 48 hours. The "shaky floor" I've been standing on had become a swaying rope bridge. Nurses gave me permission to sleep on a leatherette couch under a cold window in a noisy public (but not busy) space. I’ve honestly never been more miserable in my life, but I slept. Or passed out.

When I got up the next morning and returned to the room, accompanied by one of the GREAT nurses, Kathy had calmed down a lot but was still in a very bad state. She was much more lethargic and had flattened affect, her voice had changed (sounding like another person), movement was hard (waxy flexibility - a symptom of schizophrenic catatonia), her breathing was labored, she believed that she was having constant epileptic seizures, and still held the idea that I was the villain in the piece although she allowed me to hold her hand and feed her spoonfuls of water. 

And after a few hours, I ran like a scalded dog.

Seriously, I came home and am currently so guilt-ridden that I want to puke. But it wasn’t a totally irrational or (hopefully) cruel decision. The doctor still believed that the induced psychosis was medication-related and could clear her system in a couple of days - hopefully to find her recovering brain still recovering (the EEG test had come out good). During the time the drug would be clearing her system, there was very little I could do for Kathy and I was at absolute wit’s end - having lived in the hospital for the last 3 weeks and going through a rollercoaster of emotional events. Additionally, I wanted to see and comfort Daughter J, who has had to deal with all of this on her own. So I struck a deal with the doctor to get a two-day pass from the Covid lockdown as long as I didn’t interact with anyone who could be carrying Covid. Which currently is everyone in the world except Daughter J. Having that permission, I quickly packed some things and told Kathy that I was going to visit our daughter but would be back and that I loved her very much. The reaction I got wasn’t reciprocal, but that was the Haldol and not Kathy.

So I drove home (that’s a good choice when sleep-deprived, right?) and had a happy and emotional reunion with Daughter J, and then went into a spate of housecleaning. Just to put order to some things, or have some control over my environment. Just to interact with the familiar, and in spaces defined by Kathy. Just because I've been running on fumes and momentum and you can't just turn off momentum. And that brings us up to right now.

One of the kickers in all of this is that Kathy’s current blood numbers are looking good; it’s not impossible that she’s in remission. The bone marrow biopsy scheduled for Friday was moved to Monday, and that’s when I’m back with Kathy. If the results are good, then we’ll again have the job of getting Kathy healthy enough to have more effing chemo again to receive a stem cell transplant. If the marrow test is bad, then our options aren’t happy ones.

But the point is that there’s still some hope. And I couldn’t crash and take a long sleep tonight without first sharing that with you.

SUNDAY (Real-time as I write this at about noon Sunday)

I slept 10 hours and would still be asleep if my bladder was cooperating. It took me only a few groggy seconds to determine that I wasn't waking up refreshed and revitalized but dazed and with myriad pains as if I'd been hit by a bus. 

I'm moving around slowly and doing more chores (even with Daughter J keeping up the house, lots of loose ends develop as the weeks pass). There is laundry to do. Checks to write. Personal pill cases to fill. Spoiled food to toss out.

I called into the hospital around 9 a.m. to see how Kathy was doing. She was sleeping and had apparently slept all night, which is encouraging news. Sleeping is hopefully healing. And tomorrow (Monday) I'll return to Kathy's side as they punch a hole in her pelvic bone and draw out the marrow to tell us if any of this had a point.

I'm really trying not to think beyond immediate and welcomely familiar tasks (like talking to you, right here, right now). Everything else is mentally off-limits; in a building fire, you're told to touch a door before opening it to determine if there are flames roaring on the other side. All of my mental doors are closed but searing to the touch. And I still have guilt, but I no longer feel like the worst person in the entire world. I just feel like a bad and weak person, so that's healing - right?

But I will continue to move sloth-like through this day and take pleasure in the company of my daughter and her dog. And I will hopefully join Kathy tomorrow, stronger, and find that she's coming back to reality. And for the love of God, let it finally be a better reality than this one.

The Beat(ing) Goes On

 

It's been a wild and exhausting few days here. Strap in, it's a bumpy ride.

Since the weekend, Kathy went into a steep mental decline. I spent days telling doctors, nurses, and everyone else that it was significant and getting worse. But to quote the oncologist "only her marrow matters." Fortunately, I eventually found someone who thought that Kathy's inability to stay awake, her tendency to mumble "Yesh...uh huh" endlessly day and night, her shrieking like a wild animal when touched (not by me, but when people have to change her), and her irises fixed and shrunk to pinholes was kind of interesting in its own right. So last night she finally got MRIs to see if her brain was bleeding again.

A brain bleed, by the way, is simply a specific kind of stroke. Most strokes block the flow of blood and everything downstream gets starved for blood and oxygen. In a brain bleed, there is a rupture which lets the blood escape - and again the downstream areas of the brain suffer for not getting blood and oxygen.

The night went nightmarishly slowly, of course, with Kathy endlessly repeating plaintive nonsense phrases ("I think I can SING-guh" or "I think I'm YOUNG-guh") and heartbreakingly non-nonsense phrases ("I want to go hoooome" and “Ouchhhh”) which went well past midnight.

This morning we got the results of the MRI scans and, amazingly, she doesn't have a brain bleed of any kind and, in fact, her previous bleeds are all healing nicely. Rather, the left side of her brain shows some swelling which Dr. "Only The Marrow Matters" thinks is a reaction to some of her newer meds. So she's coming off those and hopefully my real Kathy will be returning soon.

Because of all this, Kathy's critical bone marrow test has been moved up to tomorrow, with results following in a few days. If there's no leukemia in the marrow, then the fight can go on. If there is still cancer in there, then we're likely out of options. Hopefully that’s not what Kathy will be crawling out of this drug-induced dementia to face.

So please keep those hopes, good wishes, and prayers coming. For Kathy, Daughter J, and me too.