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!

Home for the Horrid Days

As my dear friend Johnny Optimism says, "things could always be worse." After which, for Johnny, they always get worse. And there's a little of that going on at stately (well, sickly) Jarlsberg manor just now.

Going back a few days, Daughter J's surgery was successful and the surgeon removed a 30-pound cyst from her abdomen. That's three 10-pound bags of potatoes for anyone math-impaired (I'm looking at YOU Elizabeth Warren, AOC and, what the hell, every Democrat except Joe Manchin). "Bob" was removed intact and posed for a precious (and impressive) baby picture which you can see right here if you're the medically curious type. 

Daughter J now has a long abdominal incision held together by dozens of metal staples. Daughter J herself is being held together with hydrocodone.

At the time of the surgery, Daughter J's mom was still stuck in a different hospital. Kathy's 3-day chemo visit turned into a 10-day visit with additional chemo because her leukemia, like a bad party guest, apparently doesn't know when to leave. Then as a bonus, Kathy got diarrhea which kept adding days to her hospital stay (it's hard to get well when your immune system has been decimated by chemo).

On Saturday, I left Daughter J with her aluminum walker and opioids to visit Kathy. She still had the trots and everyone who came into the room wore a plastic apron with sleeves, a face shield, gloves, and a mask. But surprisingly, we were told that Kathy could come home that very day! Yay! And so we packed up and got Kathy (quite weak from treatment) back home.

I couldn't believe the change in our fortunes as Daughter J began heading (slowly, with the walker) towards the den for a reunion with her mother. And then the phone rang.

It was the hospital. "We just put the pieces together and realized that we might not have mentioned that your daughter must not get anywhere near your wife!" Because Kathy didn't just have diarrhea - she had (and has) C.Diff, which is a magical hospital-acquired bacteria that is wildly contagious, hard to get rid of, and can cause people to have whole sections of their colon removed or just kill 'em outright. Which would have been nice for me to know when I was in close quarters with her at the hospital and packing all of her stuff (C.Diff is easily passed by touching something that an infected person has touched). 

At special risk of infection (and having a funeral where everyone is snickering about death by poop) are people over 65 (me) and people who have just had surgery (Daughter J). So my two women needed to stay well-removed from each other as they toddled around with their walkers.

But fortunately and somewhat heroically, I could still take care of both of them...right up until about two hours ago, when I suddenly began vomiting violently without even having used Clan MacGregor as an emetic. Our home resonated with the sound of "ARRRRRRK!" but it was not the herald angels singing. And yes, I've been taking care of myself, but when the Devil has you in his crosshairs, there's only so much you can do.

This is not an opportune time for me to be sick, nor for our house to be quarantined and thus keep additional caregivers out. So I'm hoping I just have food poisoning and not something which will infect anyone else in my household (and which will hopefully pass quickly).

Because "hoping I just have food poisoning" is pretty typical of what passes for holiday optimism in the new normal around here.

"The barf bags were hung by the chimney with care..."

MONDAY MORNING UPDATE

Huzzah! I made it through the night with no recurrence of vomiting nor any other symptoms of illness. So apparently all I had was my latest lesson in humility and gratitude - a reminder that things really COULD be worse. All the chores that have recently felt like hard labor will today feel like a gift because I can do them.