The Horrible Thing On The Seventh Floor

Halloween is just around the corner, and it seems the perfect time to share a spooky story that I've only hinted about in the past several weeks of hospital tales: The Horrible Thing I Saw On The Seventh Floor.

When Kathy first entered the hospital with a terrifying diagnosis, I was in a constant state of panic. Every day felt quite literally like a matter of life and death. And I displayed pretty much every symptom of stress that bodies are capable of: shortness of breath, speeding heartbeat, chest pain and...and...the screaming trots.

I'm not talking regular diarrhea here, friends. No, this was noxious, still-bubbling green stomach acid which burned like a blow torch. And when it was time to go to the bathroom, every second counted.

Mind you, I couldn't use the bathroom in Kathy's room because everything that came out of her was being weighed, measured, and analyzed. So I'd have to hotfoot it to the only public bathroom on the 8th floor - a single-seater unisex bathroom which was first come, first served.

On Wednesday, September 29th, I felt the stirrings of blazing doom rumbling in my bowels and left Kathy's side to hit the bathroom. But the bathroom door was locked from the inside. I could hear someone else in there, shuffling around. So I waited. And waited. And waited.

Beads of sweat appeared on my brow. I was getting stomach cramps. The urgency got worse and worse. And then...there was a flush from behind the door!

I waited...and waited...and no one emerged. I heard more stirring from the bathroom and realized that someone was camped out for the duration, perhaps giving birth, having a heart attack, or enjoying a picnic lunch on the cool tile floor.

In desperation, I decided to make a run for the elevators so I could go to the 7th floor, hoping that the layout would be the same as the 8th. The elevator came, the door opened on the 7th floor (which was the same as the 8th except for dimmer lighting, fewer people, and everyone wearing gowns, masks, and hair coverings), and I bolted for the bathroom. It was open! Oh, sweet joy of joys! Blessed, scalding relief!

My business finished, I washed up and headed back through the dim hallway towards the elevators. And then I saw The Horrible Thing On The Seventh Floor.

It was a sign. A sign tilted in such a way that you couldn't read it when coming from the elevator, but was perfectly legible when going the other way. A sign that said: "COVID-19 Floor. Do Not Enter Without Authorization."

The bowels which had so recently held a reservoir of lava were suddenly packed with ice. 

In a daze, I returned to the 8th floor and went to Kathy's room. I told her that I might have been exposed and so had to leave immediately because of her weakened immune system. But she wouldn't hear of it and wanted me to stay with her in that frightening environment. And so I did, for two more hours.

It was on my way home that the full horror of what I'd done hit me: if Kathy died of COVID-19, it would be because I'd been too tired and confused to do the only logical thing and leave immediately. Instead, I'd taken leave of my senses and suddenly turned into Typhoid Mary.

I thought I had killed my wife. It felt like one of those awful nightmares in which you do something horrible and completely out of character, making you grateful to wake up to the realization that it didn't happen. Only it did happen and there was no waking up from it. I didn't know that I could feel even worse than I'd been feeling before, but I could and did.

A subsequent COVID test showed I didn't have the virus. And the month that has passed since that awful day showed that Kathy didn't have it, either - no thanks to me.

So you can have your Halloween ghosts, ghouls and things that go bump in the night. But none of them can ever be even vaguely as scary as The Horrible Thing On The Seventh Floor.

HALLOWEEN BONUS: ARS GRATIA ARGH...

Need a little last-minute decorating for a Halloween party or a really uncomfortable Thanksgiving? Then print out this painting by my Dad to hang on your wall! (Click this link to download a 20MB printable version)

Many Happy Returns?

Just a quick one, owing to the fact that I'm completely pooped. But not for any particular reason, as the day’s medical stuff went well. Granted, that’s with air quotes around “well,” but you get the idea.

Kathy’s blood numbers were very good - her platelet count has tripled in a week, which is great. Other numbers are moving in the right direction.

So this more or less spells success for the “induction” phase of leukemia treatment when they throw everything at a patient to keep them (mostly) alive. Next will be the “consolidation” phase, in which they try to clean up any straggler cancer cells in her body. 

The process will continue to be challenging: she’ll check into the hospital a week from now and be given chemo for 3 days instead of the 5 days she got last time. Then, rather than spend 3 weeks in the hospital trying to recover, she’ll be sent HOME and try to recover while I monitor her vitals and generally have a panic-stricken look on my face. Twice a week, I’ll also take her to the hospital for blood tests which will tell us if she needs a blood transfusion, platelets, or other treatment she can't get at home (in other words, anything other than an ice bag). And every 4-6 weeks, we’ll repeat the whole cycle - over and over - until such time as we may be eligible for a stem cell transplant, which is not a non-risky procedure. 

In the interim, her immune system is somewhat less than half of what it would normally be, and all of her vaccinations and natural immunities have been wiped clean. She'll need to start from scratch after that transplant, and in the meanwhile obsessive hygiene will be the rule in the Jarlsberg household.

We continue to take one step at a time and the path we’re on - however challenging - is the only path that can potentially lead to a good long-term outcome. So all in all, this was a good day and one I wanted to share with you.

And I also want to share that with Halloween right around the corner, Kathy dressed in black for her appointment today - including a t-shirt which created the illusion of her having a skeletal rib cage enclosing a hot pink heart. A bold choice to wear to a crowded oncology clinic, but that's one of many reasons that I love her.

Meanwhile On The Home Front

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!

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

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!

Homeward Bound?

"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

A Marrow Margin of Error

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.

-Stilton

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

What's Update

 Hello everyone,

This will be a short one as I’m beyond exhausted. Happily, the medical news (Thursday night as I write this) is pretty good - Kathy’s various indicators are all indicating what they’re supposed to, although she has some detectable bacteria in her blood (not what you want with no immune system) and so she’s being pumped with a lot of antibiotics to prevent any infections. She has no fever, which is a good and important sign.

Her energy was a bit less today, and her mood a bit down - both attributable to the long hospital stay, the constant interruptions, the inability to sleep, and more. She isn’t really hungry but has continued eating, and she has none of the chemo side effects one might expect like nausea, vomiting, or hair loss. So all of THAT goes on our gratitude list for today.

Upbeat letters and anecdotes about pretty much anything can help provide a good distraction for Kathy, as I’m running desperately low on conversational fodder. She’s really not into movies, books, or other such distractions right now, and the idea of Alexa-assisted karaoke even seems dumb to ME now, and that's saying something.

And on that note, I have some chores to do before an early (I hope) bedtime - then back to the hospital tomorrow to hopefully find Kathy having a better day.

As always, your prayers and good wishes mean a lot to all of us!

-Stilton