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.

2021: Begin the Begone

Traditions are meant to be broken, which is why I'm going to eschew (gesundheit!) my usual "Year in Review" post about 365 days of disastrous politics in 2021. And they were disastrous, with Joe Biden and his merry band of Constitution-loathing liberty-rapists doing their best to destroy everything we hold dear. But I'll waste no further time reflecting on those mendacious bastards nor the wretched sway-backed horses they rode in on.

Instead, I'll give you the only thing that I really can - which is an "end of year" medical update on the Jarlsberg family.

For starters, we had an interesting day on Thursday. Following her latest round of chemo, Kathy needs to go into the hospital every 2nd or 3rd day to have a blood sample taken, after which she gets a transfusion of blood and platelets as needed - a process which will continue until her body can start making those things itself. When we went in today, Kathy’s blood test presented us with a new first; rather than just having a low platelet count, she had no detectable platelets at all. 

This is not a good thing for two reasons. The first is that if you do any bleeding, it will quickly become a dangerous or even life-threatening event. The second is that pretty much any damn thing will make you bleed. Flossing, a stubbed toe, too vigorous a sneeze, clenching your butt (seriously, they warn you not to), clapping your hands, etc. Basically, you’re a water balloon in a cactus garden.

This being the case, our oncology contact person told Kathy “you’re not going home today” and “we’re going to wrap you in bubble wrap and keep you in a bed” after which they rolled her off in a wheelchair. Did I mention that just walking is too dangerous? Yeah, just walking is too dangerous.

So Kathy was admitted to the hospital and they soon got an intravenous line into her and, by the time I left, she’d already received one bag of platelets which will hopefully be enough to seal the hole they made in her arm just to put the platelets in. Medicine is funny that way.

Her white blood cell count was also preposterously low, though I give our contact person an “A for effort" in trying to put a good spin on it. While a normal white blood cell count should be between 4.5 and 11, Kathy was told “two days ago you only had a 0.1, but today you’re up to 0.7!” (Cue the sound of a lame New Year's Eve party horn). Put another way, Kathy has no immune system working right now, which is another reason for her to stay someplace clean and soft and surrounded by doctors with no risk of tripping over empty scotch bottles on the floor.

Considering all of this, Kathy’s mood is pretty good. It’s never fun to be in the hospital, let alone when you’ve just been told that it’s because you might not survive a day OUTSIDE the hospital, but at least she wasn’t feeling terrible (nor great, but "not terrible" isn't bad these days).  And unlike most times she’s been checked into the hospital lately, she won’t be getting bags of poison pumped into her. Rather, she’ll just be getting things intended to make her healthier, safer, stronger, and more...um...clotty. 

The goal is still for her to have gall bladder surgery when possible, then hopefully a crucial stem cell transplant when possible. It’s those “when possibles” that are a moving target, but we intend to get there.

Daughter Jarlsberg continues to recover quite nicely from her “giant thing-ectomy.” Yesterday ("a day without a doctor visit is like a day which I can’t even imagine") she had a 2-week follow-up appointment and the doctor was well pleased with how she’s coming along. He also pulled out half the metal staples from her long, long incision and the rest should come out two weeks from now. Or sooner if she doesn't stop picking at them.

Daughter J is still sore, but no longer needs to use a walker to get around. She’s had a backache, though, because her muscles are having to relearn how to balance without that 30-pound weight on her front side - her center of gravity is in a whole new position!

But one way or the other, we’re all staggering toward 2022 as a family, hoping that it will go easier on us than 2021 did. In the meanwhile, best wishes to you and yours and very sincere thanks for your continuing support, good wishes, and prayers!

Holiday tip: after burning your 2021 calendars, don't forget to sow the ground with salt!