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.