Bedside Mannerisms

It’s funny because it’s true. Also not funny for the same reason.

I wrote a perfectly good rant to go with the cartoon above, but discretion got the better of me. 

Kathy has had a rough couple of days with a lot of stuff going on, but that’s not unusual at this stage of chemo. As her doctor once said, “if you feel bad, the leukemia feels worse.” Then again I may have hallucinated those exact words, but it’s a comforting thought so I’ll keep it anyway.

Diagnostically, there’s nothing new. Well, that’s not quite true - when I asked a physician’s assistant if Kathy’s recent spate of new symptoms was due to an infection, I was told “Yes, she has infectious diverticulitis and ulcerating diverticulosis of the colon.” Then a few minutes later I was told, “No wait, that’s another patient.” Which is why it’s so important to get a second opinion before having a heart attack. Instead, when the doctor rounded, he confirmed that Kathy has no infections right now (though is wildly susceptible) and her multitude of unpleasant symptoms are all due to chemo.

“This is expected,” he said, “the only thing that really matters is how her marrow is doing.” The marrow test is said to be happening on either February 7 or 8 with results a few days after that. Until then, we can’t know what the big picture is, but we can at least hope for Kathy to get feeling better as the chemo leaves her body.

As always, your support, good wishes, and prayers are all greatly appreciated!

A Happy Anniversary

Today is the day Kathy and I celebrate 38 years of matrimony. Or at least we think it’s 38 years - we don’t have our marriage license available to look at just now. Moreover, it gets confusing because we were together for years before making things legal. We’re actually closing in on 50 years together.

Our wedding day was perfect, at least for us. Because it was totally spontaneous and decidedly modest in scope. At the time we were living in a genuinely nice mobile home in southern Indiana, a scenic location which suffered only slightly from proximity to the city’s open-air sewage-settling pits at the water treatment plant. If the wind was blowing from that direction, we darn well knew it.

My older brother lived in Hawaii and was getting married. Being of very modest means, we didn’t plan to attend and had already sent our regrets. But with the travel bug in our heads, we considered instead making a trip to Disney World. To put us in the mood, I hung a sheet from the ceiling and projected pictures of Disney World from a Viewmaster projector - the kind that displayed those little 3D discs for kids. After going through the Disney World slides, we started looking at pictures of Hawaii (I hate to brag, but I have an extensive collection of Viewmaster discs). At which point we decided “what the heck, let’s go to Hawaii and surprise everyone!”

However, it also occurred to us that Hawaii is a classic honeymoon spot, so we could kill two birds with one stone simply by getting married at the city courthouse (did you see the movie “Breaking Away”? It’s the same courthouse where the kids get married).

On the big day, I decided to get Kathy a lovely corsage which would live in her memories (and perhaps a Tupperware container) for decades to come. So of course I went to Kroger to get one. When I told the gal behind the counter what the occasion was, she was tickled and put together a genuinely lovely corsage - then insisted on giving it to me free as a wedding present. Score!

Kathy and I arrived at the courthouse with our witnesses in tow - we each brought a friend from work. And once we were ushered into the courtroom, we had to wait our turn while the judge finished some other business. He threatened to throw one guy in jail for reasons I can’t recall, then listened to the details of another case and demanded a rape kit be put into play. Romantic, huh? 

But the judge couldn’t have been nicer as he summoned us up front and began reading the all-important words which would bind us. Unfortunately, every time he came to a spot where my name should be inserted, he just read “John Smith” off the page. I was afraid to dispute this for fear of being thrown in jail or being subject to a rape kit. 

As Kathy and I emerged from the courthouse as man and wife, we encountered a TV cameraman from the local station where my twin brother worked. So in a time before consumer video was even a thing, we got professional video of us walking, talking, and waving happily without needing to pay an actual photographer. Score!

Despite our modest budget, we wanted to throw a nice little reception for our friends, so we invited them to a nice little fern bar that had cheap drinks during Happy Hour ("I'd like to make an announcement! You all have to buy your own drinks!") and free finger food munchies. A good time was had by all, and we were soon joined by my boss from the radio station where I worked (not coincidentally just across the street from the bar) and the good man not only toasted us but insisted on picking up the bar tab for the entire group. Granted it was only a group of about 10 and the drinks were half-price, but it was still a lovely and appreciated gesture. A free wedding reception? Score!

As things wound down and Happy Hour pricing went away, a friend from work and her husband offered to take us out for a really good steak dinner. And in Bloomington, Indiana that could only mean one thing: “Janko’s Little Zagreb” (it’s still there - you can see it online).

We ordered steaks and all the trimmings and the best wine we knew how to order (“Is red good with meat? Let’s do red!")

When the bill arrived, our friends reached for it - but I grabbed it first. I hadn't paid for anything all day, so insisted that I pay for the meal and drinks. And the bill was...$38. Which may even have included the tip - I don't recall. But we definitely DID tip. You don't want to get sideways with Janko in a town as small as Bloomington.And shortly thereafter we flew to Hawaii which is when and where the picture above was taken.

As far as I'm concerned, it was the perfect wedding day - especially since I'd managed to land my perfect soulmate. Today, we celebrate that occasion 38 years ago and ask you to celebrate with us. And in the spirit of tradition, you'll have to buy your own drinks.

(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?

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.