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.)