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. 

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.