Monday, October 25, 2021

Meanwhile On The Home Front

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As landmarks go, being home from the hospital for a full week may not sound like much, but it's cause for celebration here in the Jarlsberg household. Because that's how long it's been since Kathy was discharged and put into the care of a very, very nervous guy.

Happily, things have been running pretty smoothly. As of today, Kathy has completely given up use of her walker for getting around, though still has to pace herself as she continues to rebuild muscle, energy, and blood cells. Her hair is thinning, but she's not worried about it - perhaps because I've made being bald look so good over the years. Or not.

The elephant in the room, of course, is figuring out just where we are in all of this and what comes next? Theoretically, we'll find out a bit more on Tuesday when there will be a fresh blood draw and analysis, followed by what will hopefully be an enlightening discussion with the experts.

In the meanwhile, I've recently taken receipt of every relevant publication from the Leukemia & Lymphoma Society (available free, for which I'm greatly appreciative) and so have plenty of anxiety-producing and hope-inspiring reading material to work through. I'll note, though, that all of the many booklets are a bit on the dry side and could really benefit from a little humor...

If anyone from the LLS happens to be reading this, I'm ready to provide services free of charge! Or to write you a personal letter of apology!

Seriously, we're grateful for each normal-ish day and hope to enjoy many, many more. And we're also grateful for the support, insight, positive thoughts, and prayers we've been getting from family, friends, and YOU. They make a real difference, so please keep them up!

Wednesday, October 20, 2021

There's No Place Like Home, There's No Place Like Home...

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You DO read Johnny Optimism, right...?

I'm delighted to say that Kathy has returned home! It turned out that all she needed to do was click her ruby IV bags together and, oh yeah, be put through weeks of Technicolor hell.

But after a month in the hospital being treated for Acute Myeloid Leukemia, she was allowed to come back home where, rather than being treated by a team of medical experts 24/7, she is being treated by a sleep-deprived idiot who may not be altogether sober after 5 o'clock.

The very idea of taking on this responsibility terrified me, because it's not like Kathy had suddenly achieved robust good health and a penchant for doing Olympic-level calisthenics. A point best illustrated by the following interactive experiment...

Right now, wherever you are, clench your butt cheeks together. Do it good and hard, like you're trying to crack a walnut in there. Hold for a count of five.

Did you do it? Surprise - you just killed yourself!

At least, that was Kathy's situation three days before her release. Her platelets (which clot blood) were so low that she wasn't even allowed to do the few exercises in bed which she'd previously been assigned. Including clenching her butt for five seconds - because it could cause her to bleed to death.

Since that time, she's received multiple bags of blood and platelets (thanks, nameless blood donors!) and so should be fine until her next doctor appointment in a week. And at that visit we'll hopefully learn where we are and what comes next. The greatest likelihood is a repeating cycle of in-patient chemo for a few days, followed by several weeks off.

Or not. Of the many things leukemia is, "predictable" is not one of them.

But Kathy is home and coping well with the indignities of using a walker and (at night) a bedside commode. It's my job to clean the thundermug, but it turns out to be less offensive than watching the news, so I'm doing fine.

We literally don't know what tomorrow will bring so we're appreciative of days like today which were relatively normal. Well, our new normal.

And as always, I'm at a loss for words for how much your ongoing support, comments, good wishes and prayers mean to us. Whatever you've been doing, you have my very sincere thanks - and please, keep it up!

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