(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.)

Standing On Shaky Ground

Several weeks ago, I noticed an odd thing about the otherwise sturdy and modern hospital where Kathy is fighting leukemia. As is the case with most high-rise buildings, there is a little alcove where you wait to catch one of the multiple elevators. But oddly, the floor in that area shakes just a bit. Not a lot, but sort of a surprising amount for a building you don't want to collapse under you. However, I assumed that elevator shaft design probably was engineered for a little extra give and take.

In Kathy's latest extended (and ongoing) visit to the hospital, she was promoted to the 11th floor. The chair where I lived much of the day was between the windows and her hospital bed...and oddly, that floor was shaking too! Oh sure, tall buildings are built that way, but it still felt odd in an environment where unsteady patients are trying to do basic physical therapy tasks. 

Curious (and bored), I downloaded an app that would measure vibrations when you lay your phone on a flat service. I stood near the window area of the room and waited until things were shaking pretty significantly before putting down the sensitive meter and seeing that the vibration rate was...zero.

The building wasn't shaking - I was. And random little gravity waves were starting to suddenly pull on me - sometimes straight down, sometimes to one side or the other. And the condition was worsening. So I finally fessed up to Kathy and Daughter J, and made an appointment for a video visit with my doctor at 10 am today. I'm hoping he'll laugh and say "allergies," but I'm betting he'll say "we'd better look at that. How about an MRI as fast as you can possibly get here?"

But there's a doozy of a complication, because of course there is.

Since some damn fool gave Anthony Effing Fauci tax dollars to fund the creation of a seemingly unstoppable plague, the hospital is instituting a new COVID visitor policy today. I can live in Kathy's hospital room if I like, and even wander around the interior of the hospital. But if I so much as walk outside, then I'll be barred from the hospital until the new lockdown is over. And the previous one lasted eight months. And of course, the "stay or go" decision has to be made today.

Who knew Hell had this many circles, so much evil imagination, and such an interest in my family?

Kathy is a fighter but she's sick and tired of being sick and tired. She needs someone there to help (try to) keep up her spirits, as well as to act as her advocate while she has (hopefully temporary) hearing issues and chemo brain. On the other hand, she reminds me that I'm frequently boring as hell, and just having me stare at the wall in gloomy silence isn't the sure-fire good time that you might assume it is. She also feels like I can get more things accomplished for her on the outside rather than just turning into a sleepless, unwashed zombie who spends nights sucking air through a CPAP machine while sitting upright in a Naugahyde chair.

But if I don't stay, I might never see her again. Or at least I can't get that horrible thought out of my head. Maybe the hospital would let me back in (just once and if I get a COVID test) if Kathy starts having a rougher time. Or maybe this particular lockdown won't last 8 months, now that the Biden administration is throwing around unreliable free tests kits and ineffective masks while blaming the unvaccinated for carrying and spreading Omicron just like the vaccinated do. How can that not solve the crisis?

As I've previously established here, Kathy is something of a technophobe - so when I'm not with her, I'm really, really out of touch with her. That's hard for me to deal with for even a day...let alone for weeks of months, especially if I'm only getting short and cryptically terrifying messages from the hospital once a day.

I don't know what to do, but I'll have to make a choice today. Or maybe it will be made for me: if my symptoms suggest a real physiological problem, I'll have to leave the hospital and hear the lock click behind me. Or if Kathy gets a disturbing health update today, then my place is with her. Period.

Neither choice is good. Neither choice, based on current information, is clear. But here we all are anyway, in the world that Wuhan broke.

Your good wishes, back slaps, jokes, and prayers mean a lot, so please keep them coming. And you may want to pray for Kathy's nursing staff as well - some old guy keeps giving them Johnny Optimism books as a weird but sincere way of saying "thank you."

————————UPDATE————————

It’s just past 11 am on Monday and I want to update everyone and clarify a few things (which weren’t necessarily clear to me at the time of the writing above). SPOILER ALERT: Our lives haven’t gone to hell yet and hopefully won’t.

To begin with, it turns out that the lockdown isn’t for the whole hospital. It’s only for the oncology floors where patients range from “super-vulnerble” to “Oh, my God - don’t breathe on them!” And that’s a smart policy to protect our loved ones, especially since there are stupid people loose in the world. One patient recently had a visitor (you’re only allowed one per day) who felt sick and didn’t use a mask. Within hours, the patient also had COVID. So “trusting people to be smart and responsible” clearly isn’t a viable policy option.

Of my balance issue, my doctor of course wanted blood work and a CAT scan, but he has no way to arrange that at the hospital I’m stuck in. He also said it doesn’t sound like Parkinson’s or anything similar, so for now I can let it ride until, well, I can’t. Happily, it’s still at the “annoyance” stage.

Getting care at THIS hospital is hard, but again the policy makes sense. If a visitor feels ill, they need to report to the emergency room for examination and possible treatment. And sitting around in a waiting area with a bunch of people who are conceivably infectious. So we’ll say “no” to that for a while, but it’s an option. 

The visit from Kathy’s oncologist this morning gave us some vague new insights into where we are. She’ll continue getting chemo through her brain port (probably two injections a week). Then, since she still hasn’t achieved remission after her initial rounds of chemo, she’ll be starting a new round in a few days. The chemo itself will be somewhat milder this time, because of Kathy’s age and overall condition. Our goal is still remission and stem cell transplant.

As for my residency question, we’re going to take it day by day. I’m here for now, and each new day can be a “decision day” - with the possibility of hospital policy changing at any time to (hopefully) take the pressure down a few notches.

At the moment, things are going okay here, Kathy and I are in relatively good moods, and life goes on.

Any (Cranial) Port in a Storm

The “Ommaya” was named by the first Italian patient to see himself in a mirror afterward

Greetings all, and welcome to the weekly/weakly meeting here at Stilton’s Whine Bar.

As I write this, I’m sitting in Kathy’s hospital room all by myself. I arrived early today (Thursday) hoping to catch a glimpse of one of those elusive will-o-the-wisps called “doctors.” That didn’t happen, but I did find hospital personnel preparing to roll Kathy (and her entire hospital bed) out the door to take her to brain surgery. Kathy was in a cheery mood about it all, because hospital life is so dull and depressing that she actually liked the sound of invasive brain surgery simply because it would be something to do.

So let me back up a step or two. After hearing nothing from anybody about anything ever, the doctor made his pop-in appearance yesterday and started, jovially, “Well I guess you heard about your cerebrospinal fluid and...”  I cut him off to say we hadn’t heard about that, how WOULD we have heard about that and, by the way, we still haven’t heard results from other tests taken a week ago.

“Oh,” chortled the doctor (a ringer for Kenny the radio station manager on the Frasier TV show), “there are cancer cells in your spinal fluid and brain. Thought you knew. So we’ll look into putting an Ommaya chemo port directly in your brain. Hang in there!”

He wheeled to go, but I spoke up - wanting to know the results of other tests. And whether this implanted skull-port would help the lesions on Kathy’s brain. And mostly, with all of this latest round of crap going on, was Kathy still in the running for a potentially life-saving stem cell transplant?

“Ooh, probably not. Yeah, that’d be hard” (he had one foot out the door and was so, so close to escaping).

“Because,” said I, “if there’s no hope or chance of recovery, then we’re really not interested in brain surgeries done just for fun.”

“Understood. That’s certainly something to talk about.” And POOF...he was gone.

So Kathy is currently having a hole bored through her skull (there are youtube videos you can watch if you’re curious) to make it faster and easier to pump toxins directly into her brain, unlike the slower filtered process by which the rest of us receive brain toxins from the media.

In order to try to stay in some sort of communication, I’m now trying to answer my cellphone when it rings, though the odds of my doing so successfully are pretty much nonexistent. Yesterday I got a call (and I never get calls) which I fumbled to answer thinking it might be something critical from the hospital. Instead, it was a telemarketer who wanted to talk to me about funeral services. I interrupted the sales pitch in my best Liam Neeson voice and said, calmly, coldly, and sincerely “if you ever call my number again, you will be using your own services.”

Which brings me up to the present for now. I’m in an 11th-floor hospital room crammed with the bric-a-brac of survival: Nutty Bar wrappers, coffee cups, toilet paper, ubiquitous bottles of Purell, aging newspapers, and biohazard wastebaskets. Next to the spot where Kathy’s bed should be, there’s an I.V. Stand which is making a goofy two-tone clown-horn honk every 15 seconds to say “Hey, the person I should be dripping into is missing!” I have a vague fear that if I turn around, it’s going to be Tickles the Clown, who has come to take me away for my sins against man and medicine.

And now it’s time for a really wretched coffee refill and more waiting. I’ll try to add more to this when I actually know something. 

——

About a half-hour after writing the above, I got a text from the surgical team that all had gone well. And within an hour, Kathy was back in the room with me - wide awake, happy, smiling and laughing. She had a white bandage covering the new addition to her noggin, but nothing huge. And while our overall situation hadn't changed, we still enjoyed a great day together - in part because we actually had something to talk about ("Hey, they drilled a hole in your head!") and because we could focus on just the events of the day rather than bigger worries. Which, it turns out, is a life skill I've always needed to be better about and am finally learning.

A fun moment: when Kathy was wheeled downstairs to one of those curtained holding pens before surgery, a nurse came in to check on her and Kathy told her, with a perfectly straight face, "I'm here for a routine colonoscopy." Apparently, this put the nurse into a moment of confused agitation before Kathy let her off the hook. Is it any wonder why I love this woman?