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?

Please, Sir, May We Have Some More Problems Please?

A perfectly good Insurrection Day spoiled

It’s been about a week since my last update and, as usual, I’m pretty much exhausted at the moment but will try to get you caught up.

As you may recall, Kathy has been hospitalized for a week now because her blood numbers (red blood cells, white blood cells, platelets, ANC) just weren’t coming back the way they should have after her most recent (but extended) round of chemotherapy. If you have no immune system nor any ability to stop bleeding, the hospital folks don’t really want you walking around loose. So Kathy has been stuck in the hospital (and stuck repeatedly with needles). Normally she would be injected with a “growth factor” to help speed things along, but it turns out that the growth factor also stimulates growth of nascent leukemia cells, which is really high on the list of things we don’t want. So she has to recover the slow way. Painfully slow.

But that poses its own problems, as was evidenced today. Because Kathy will have no truck with newfangled technology like smartphones, I don’t know her status until I arrive at the hospital each morning. And when I did today (Thursday), Kathy looked unusually wan and opened the conversation with “I have brain bleeds.”

She’d had a weird and bad feeling the previous day which she couldn’t really put into words. Then sometime this morning she again felt really bad and start seeing a star shape in both eyes, as well as stammering when speaking. They quickly ran her downstairs to get a scan (I forget which kind) which confirmed bleeding in the brain. Not massive, but even a little is too much. They weren’t sure if it was old blood or new blood, though I don’t think anyone REALLY thought it was old blood. We’re not talking aneurysm-type blood bombs here, thankfully, but rather a fingertip-sized spot on the surface of the brain, and about 4 other pencil-point-sized spots. At least one of these (I’m not sure which) is near her speech center.

I knelt by Kathy’s bedside as she was explaining this, and paid no attention to the custodial lady who was antiseptically mopping the floor on all sides of me. So when I stood up, I quickly slipped and crashed to the ground (who doesn’t enjoy physical comedy in a hospital room?) upsetting Kathy and causing multiple medical folks to rush to the room, only to shrug off the situation when it turned out to be a civilian who had landed on his ass. In fairness, I told them I was fine, which wasn’t entirely true but succeeded in making them all go away.

Kathy received multiple bedside tests to check for a stroke or neurological damage and nothing significant was found. She was still having the visual problem from time to time, but the doctor said “if it goes away then we won’t worry about it for now.” Okay.

So let’s talk about brain bleeds. To my understanding, which is damn little, they could be caused by three things: the first is that her platelet count was so low, her brain just decided that bleeding would be easy to do. The second is that leukemia cells have migrated through Kathy’s cerebrospinal fluid and taken up residence in her brain, where they encourage bleeding. The third is general bleeding and inflammation caused by a brain fungus, because why not at this point? No, it would be caused by Kathy having no immune system to speak of.

To help figure out the cause, Kathy will be given another series of scans first thing Friday morning to see if the bleeding has stopped (she’s been pumped full of platelets) or is continuing. She will then be given a spinal tap to see if there are leukemic cells in her cerebrospinal fluid (and presumably bathing her brain). Her blood is already being cultured to test for a fungal infection, and among the five (count ‘em) bags of stuff they were pumping into her today, one bright yellow bag was a powerful anti-fungal because it would be a bad idea (really) to wait for a diagnosis before starting treatment.

Unfortunately, the anti-fungal medicine is “a tough one to tolerate,” as we discovered when Kathy got stabbing pain shooting across her back. The drug was disconnected and after Kathy was filled with steroids and benadryl, re-administered with much less pain.

If the bleeding was simply caused by low platelets, then maybe the additional platelets she got today will handle the problem. This is the result we should all be hoping and praying for. If it was caused by a brain fungus, then maybe the drug will knock it out. This too is a highly desirable result. If, on the other hand, there’s leukemia in Kathy’s brain, they will be surgically inserting a port directly into her skull so they can pump chemo in there. And none of us likes the sound of that, am I right?

Backing up a beat or two, the brain bleeds have had a neurological impact - but hopefully nothing too severe or permanent. Kathy passes all of the “I didn’t have a stroke” tests with flying colors, but has some minimal aphasia (difficulty coming up with some words), stammering (particularly when agitated, and why the HELL wouldn’t she be agitated most of the time lately?), the occasional spots in the eyes, and a couple of spells of extended and wandering conversations with people which are cogent but don’t really have relevance to the moment. And Kathy has NEVER been a motor mouth, so I made a point of telling the medical folks “that’s not how she normally is.”

Happily, brains can bounce back from stuff like this - IF the root problem(s) can be taken care of. While, oh yeah, fighting blood cancer. On that front, she had a bone marrow sample taken on Wednesday, and we should learn more about what’s going on in there by about Sunday.

And that was our busy day. Daughter J continues to mend from her surgery and will bravely confront the Texas DMV on Friday to get a new driver’s license. I will be heading to the hospital ASAP Friday morning to offer handholding and, if necessary, another cheap laugh from a spectacular pratfall.

Good wishes, thoughts, and prayers PLEASE.