Wednesday, October 13, 2021

Homeward Bound?

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"Honest, Sweety, the Amazon reviews say this is JUST as good as the expensive hospital machine!"

The very good news is that Mrs. Jarlsberg may be able to come home from the hospital in a few days! 

That being said, she's not cured, not particularly healthy, not comfortable at all, not nearly over the effects of chemo, and not necessarily ready to be cared for by an aging doofus instead of a 24/7 staff of medical experts. But it will mean a lot to all our spirits to get her home again (restoring the heart and soul of our home) as she continues chemo treatments on an outpatient basis. I think.

I say "I think" because we continue to fail to get useful information from anyone. I've been carrying a list of unanswered questions as basic as these:

• Where are we in the grand scheme of things?
• Is she doing well?
• What happens now?
• What challenges should we expect or prepare for?
• How does one care for a leukemia patient at home?
• What medicines is she on and why?
• After having her immune system wiped out, is she no long vaccinated against ANYthing?

And much, much, much more. Like learning new dietary restrictions, because there are certain foods that are hazardous to people with compromised immune systems. As God is my witness, one list of forbidden foods warns of the perils of any "blue-veined cheese" - specifically Stilton.  Although I don't know if the parts of me that aren't blue-veined are as risky.

It's a pity that I don't have the energy to do justice to the many amusing anecdotes I could share about recent days.  Like when your wife really, really needs a bag of platelets but we're told "the blood bank is out of platelets." Or when a crusty nurse's aide insists on wearing her plain-paper Covid mask two inches below her nose while breathing directly on a woman with a thoroughly compromised immune system. 

And remember that emergency root canal I had? I had to pay $3200 up front and then the temporary fell out within 24 hours. Today I had to return to the clinic (stealing time away from Kathy after a tense and sleepless night) because the exposed tooth shards were slicing up the inside of my cheek.  And someday, a long time from now, if everything goes well, I'll share the story of the Horrible Thing I saw on the Seventh Floor. Even now my blood runs cold, and I'm not kidding.

We're a long, long way from being in the clear...and that's fine. A long and rough road ahead looks a lot better than the "dead end" sign we were originally presented with. We're grateful for each day, and even more grateful that there is growing cause for hope.

For the time being, you can pretty much expect that health updates will be the subject of this blog. In part because this is my whole world right now, but also - importantly - because the support you've been giving us is still needed, appreciated, and making a difference.  I don't know how we'll ever put together a proper in-person gathering, but when it happens the drinks are on me - and I'm not talking about Clan MacGregor.

Thank you for continuing on this journey with my family. And for being part of my family. Keep those positive thoughts, good wishes, and prayers coming!  -Stilton

Friday, October 8, 2021

A Marrow Margin of Error

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I couldn't include Kathy in the picture because it would be a Hippo violation

As usual, I’m way too pooped to write very much, but want to keep everyone in the loop.

All in all, today (Thursday) was a good day for Kathy, although “good” is a lot more complicated than it used to be a few weeks ago. Most importantly, her bone marrow biopsy results came in and were good. Maybe they were great. Conceivably almost perfect. 

I’m vague because it’s damn near impossible to get straight information out of the doctors. So here’s the deal: what we ideally want is all of the cancer cells in the blood and marrow to be 100% wiped out, after which Kathy will receive a drug which will get her body building white cells and bone marrow again - only healthy (we hope). But Kathy’s result showed that she still had 0.1% cancer cells. Almost none, but not quite none. 

Which is where the doctor had to make an “educated guess” based on his expertise and experience. That 0.1% might represent cancer cells that are still in the process of dying…so maybe she DID get ‘em all (or is about to). The problem is that if too many are still viable, the same drug that gets everything cranked up to high speed again will also stimulate the growth of those cancerous cells. 

But the other option is another round of tough chemo, and that’s not a fight anyone walks away from unscathed. Those toxic chemicals are designed to do damage and they're good at their job. Kathy is doing well, but she’s fighting fevers (which can be quite dangerous) and has a variety of other challenging and risky side effects which are all being handled, but which we certainly don’t want to make worse. So the doctor, taking all of this into consideration and without ever using the “remission” word (although that might just be an oversight), has decided to move ahead as if Kathy is in remission and see where it goes from there.

So this was probably really good news, but it’s unsettling too - like having a front-row seat to watch a guy juggling nitro-glycerine.

Outside of sleeplessness, an uncomfortable skin condition (chemo effect), a continuing barrage of fevers (treated with Tylenol and ice bags), endless IV bags of blood and platelets, etc, Kathy is doing well and keeping her mood up. She exercises daily (confined to a chair for the time being), is doing a great job of eating, and our conversations are very normal and punctuated with laughter…when we can think of things to talk about. It turns out that the only thing in our heads is hospital stuff, and that’s what we DON’T want to talk about. Oh, we occasionally drop four-letter commentary on the current state of affairs, but our hearts aren't in it.

Daughter J and I regroup each evening to take comfort in each other’s company (I'm the only visitor allowed) and look forward to getting Kathy home where she belongs. And hopefully that will happen soon, but right now we’re very much taking things a day at a time. Which, believe me, is all we can handle.

As always, thanks to all of you for the amazing display of support, good wishes, and prayers. They all make a difference. We never really knew how many of you were family until now.


Wednesday, October 6, 2021

Day By Day

Yes, that's the Southpark version of the Jarlsberg family

I'm overdue in sharing an update, mostly because of my new habit of falling into a coma about an hour after coming home from the hospital every day.  So I've given myself seven minutes (really) to write what I can.

Progress continues in the right direction, which isn't necessarily the same as an easy direction. Kathy completed her first week of chemo, then a week of recovery (trust me, it's no spa vacation - it's still pretty bad), then on Monday had an all-important bone marrow biopsy to measure progress.

Taking a bone marrow sample is insanely painful, which is why they sedate the patient whenever possible. When you're in the hospital recovering from chemo and leukemia, that sedation isn't possible. Instead, you're told to take two deep breaths immediately before experiencing pain that makes you see colors with no names. Kathy came through this quite well (albeit understandably shaken for a while) but is in no hurry to repeat the process.

The results will likely be ready on Thursday, Oct 7. In a perfect world, we'll be told that she's in remission and can start a new drug regimen to start rebuilding her bone marrow and immune system. In a slightly less perfect world, her system won't be ready for the drug "jump start" of things, and she'll need to add another week or so to her expected stay so that her systems can do some recovering on their own. And the third possibility is that we've made progress...but not enough yet, and will have to start a new round of differently-targeted chemo.

Waiting for those results isn't easy; Kathy has been fighting fevers for the past few days. Which really isn't what you want when your immune system is in the dumper. But she's getting IV antibiotics and medicines galore, and she's being well looked after. Although she was inflicted with a too-nervous husband today who added an unneeded note of panic to the medical goings-on. Just doing my job, folks.

To help make sure that I'm not personally a disease vector, Wednesday afternoon I'm visiting a drive-thru Covid testing place to see if they can touch the back of my skull (from the inside) with a Q-tip. I can't say I'm looking forward to it, but I'm sure not going to complain about it to a brave woman who just had bone marrow sucked out of her with a massive syringe.

The ongoing support we've gotten from all of you means more than I can say - especially now that I've more than filled that 7 minutes I was going to devote to this update. But please know it all counts.

Since Thursday is likely going to be important, I ask that if you're so inclined you double-down on your good wishes, positive thoughts, and prayers for Kathy's test results. And I thank you from the bottom of my exhausted heart.    -Stilton