COMMENTS:

TO REACH THE COMMENTS SECTION, JUST CLICK ON THE TITLE OF EACH POST!

Saturday, January 22, 2022

(This Is) No Place Like Home

Throne for a loop

This may be something of an odd update, but everything in Life feels pretty freaking odd to me right now so what the heck? We’re closing in on week one of my living here at the hospital with Kathy owing to Covid restrictions, and I’m put in mind of Jack Nicholson’s stunned disbelief in “One Flew Over The Cuckoo’s Nest” when he learns that his fellow asylum inmates aren’t prisoners but are there voluntarily.


It’s definitely not comfortable here for anyone, but everyone is doing their best to make things as good as possible. And I don’t want to make anyone jealous, but I get complimentary hospital food. If I’m in the mood for free oatmeal in the morning, all I have to do is snap my fingers and wait about an hour and a half for it to be delivered.  Score!


As far as actual health news goes, let me try to cut and paste from some personal letters I’ve sent recently. I’m writing this on an iPad and any labor-saving tricks I can find are being put into play...


WEDS 1/18


I forget if I’ve already said all of this (brain fog!) but Kathy has just been started on a 10 day regimen of chemo - 7 kinds! Four intravenous, two injected into her skull port, and one pill. The idea is to give her milder chemo (but a broader spectrum) for a longer time - twice as long as any time before - to try to finally get her into remission. Given the length of chemo and some time to recover from it before a bone marrow test, it will probably be 3 weeks before we’ll know if it worked or not.


Today we asked Kathy’s oncologist if we were still on the path for a stem cell transplant and he confirmed that it’s still the goal, but he said “I won’t lie, at this point it’s a long shot.” Which isn’t what we most want to hear, but is still better than NO shot. At present, if it doesn’t work, we don’t know if there are any promising remaining paths for treatment. So for now we have to take it day by day and keep hoping and praying that things will go our way. And make no mistake, that’s still a possibility. Especially with additional hopes and prayers paving the way.


Daughter J and I are doing fine in a “not at all fine, really, but keeping it together at least half the time” sort of way. Her recovery from surgery is going great and she’s had all of her staples pulled out, much like a surgical Playmate of the Month. And while I’m still feeling the floors shiver and shake beneath me, I haven’t fallen over and nothing has gotten worse.  Oh sure, my doctor wants me to get a CAT scan, but I can’t really do that while here in covid lockdown. If things get too weird, I will reluctantly seek treatment.


Since that writing my condition remains the same. Usually no more than a mild inconvenience with only the occasional hint that I’m standing atop the San Andreas fault. And speaking of “faults,” we still don’t know who deserves the credit for this one on...


Thursday 1/20


Today’s main excitement (there are random smaller terrors throughout the days) was when Kathy was getting an intravenous infusion of a pus-colored antifungal medication which she needs steroids to tolerate (otherwise she gets awful back pain). But today they DIDN’T give steroids first, perhaps hoping to help with the 40 pounds of edema Kathy has put on in the past several weeks. And she didn’t get a backache!


Instead, she had an anaphylactic reaction and her throat seized shut. It started with labored breathing, then a little wheezing, then a LOT of wheezing and a feeling like something was wedged in her throat. I watched her blood oxygen numbers quickly tick down into the low 80’s while Kathy understandably and appropriately was having a panic attack. Help came quickly, though I think I was the first one who put together the steroid-antifungal-anaphylaxsis scenario, which hopefully sped up the treatment time. She was administered steroids, oxygen, and then had a respiratory therapist come in to give her medicated mist to inhale. After which (a couple of hours) she was fine, but we all had a bunch of adrenalin to process.


Since then there have been no immediate emergencies, but days and nights are a blur of tests, infusions, pills and alarms. Pee and poop (which, during chemo, are roughly as toxic as the acid blood of the creatures in ALIEN) need considerable management and a minimum of modesty. 


Kathy and I are glad to be with each other, but the days don’t fly by. No external entertainment is either appropriate or interesting, though we sometimes like to put nature scenes underscored with new age music on the TV just to have something to look at.


And Daughter J has to carry this emotional weight on her own just now. The people she could turn to either have covid, have been exposed to covid, or simply don’t want to risk catching covid.


(ASIDE: YOU ARE THERE! I’m writing this in the near pitch dark of the hospital room, the only light being the glow of this iPad and innumerable little screens and indicators scattered about the room. Kathy is desperately trying to get some sleep, but every time she moves her tube-riddled arm a tiny amount (technically 1.0 RCH) an alarm starts beeping warning that there is a “downstream occlusion” and whatever life-giving medicine is supposed to be pumping ain’t pumping. So you call the nurse who says “we’ll be right in” and nothing happens. Well, not NOTHING - every 3 minutes the warning beeps double in volume, ultimately reaching ear-bleed territory. We easily waited 5-10 minutes just now, and Kathy’s elusive and important sleep isn’t coming anytime soon. This will continue all night.)


In fairness, for sticking with this post you also deserve a little humor, so let me try. 


I have washed and Purelled my hands so frequently that my iPad no longer recognizes my fingerprints. Nor would the cops, which makes this seem like a dandy time for me to go on a crime spree.


On a related note, a relative of mine offered to sneak a bottle of medicinal liquor to me, but then his wife looked up the penalties. Apparently a bottle of smuggled booze is considered a life-threatening substance or device brought into a public place, and you will be instantly jailed under suspicion of terrorism. Unless you just hurl the bottle through a glass window while yelling “Black Velvet Matters!” (Black Velvet is the bourbon-ish inbred cousin of Clan MacGregor.)



57 comments:

Anonymous said...

Having gone through a similar circumstance a few short years ago and the horror that goes with it, I totally understand your current state of mind.
It's not necessarily what's happening that fills one with dread, but the possibilities.
My prayers are with you & your family; beat this thing and get well Mrs. Stilton!

CC

Anonymous said...

Having gone through a similar circumstance a few short years ago and the horror that goes with it, I totally understand your current state of mind.
It's not necessarily what's happening that fills one with dread, but the possibilities.
My prayers are with you & your family; beat this thing and get well Mrs. Stilton!

CC

Anonymous said...

Damn, Stilton, the hits just keep on coming. I've run out of things to say, other than that I'll keep on praying for you and yours.

Now more than ever, stay strong, brother.

John the Econ said...

Ugh. As always, we're with you.

Been wondering if you've managed to get any Clan MacGregor in there.

It's a shame you're not in California, where most crime is now legal as long as you report the proceeds on your taxes.

M. Mitchell Marmel said...

What you need is one of those M*A*S*H vodka dispensers that looks like an IV bottle. Problem is, with Clan MacGregor, it would look and taste like a urine sample... :D

Bill Moore said...

Hello Stilton,

Having been the US Army, and driving an ambulance in a war zone, I've seen (and helped) many folks through bad times.

Also, I am 82 years old, and since I am in good health, I help other folks who are less fortunate.

I've helped many folks who I had almost given up on, and they came back to the world of healthy folks.

I wish your sweet lady all the best,
Bill Moore

Sortahwitte said...

Stilton. Your hangers-on and looky-lous are all still here. Praying and sending best wishes.
Love, Glen and Sioux.

LSP said...

"everything in Life feels pretty freaking odd to me right now"

dam straight.

HankJ said...

Damn Brother, please hang in there and keep us posted as you can.

Peace

Unknown said...

So your decision was to move in with Kathy. GOOD on you! Your bed looks remarkably like the one I used at Columbia Presbyterian where my daughter was a patient. Oh, yes, hospital noises make sleep nearly impossible, and when you manage an hour or so, you feel like you've really accomplished something! Prayers for some good stats and fewer complications. Somehow we are given strength to do what has to be done. I'll say some extra prayers for extra grace for all three of you Kindest personal regards, Grandma Em

Ole Scrapper said...

Stay strong Stilton, don't forget to say your prayers and keep the faith. Glad you can stay together during this troubled time. We think of you and your often and when we do send prayer upward in your behalf. There is much love out here. Thanks for your labor of love to keep us updated... my natural incantation would find me a private hide and pull it in. Your courage is outstanding. Much Love Dave

Mark McKinney said...

Oh Stilton. These are troubled times. Hospitals can sometimes be the worst of all experiences. Since August I have been in the hospital four weeks. The covid patients are a real challenge for the staff. May we return to "normal".

Lee The Voice said...

still holding you up in prayer, Stilt. Also, lifting up your daughter. It must really be hard to go through surgery, recovery, etc, without you and her mom to lean on. Yes. I'm praying for her. I really am.

Kentucky Packrat said...

Alice, welcome to Wonderland. Be careful about accepting anything the Mad Hatter offers you...

I feel sorry for your family and everyone who has to go through this during COVID. It was insanity trying to go through it normally.

One practical suggestion: all of the IV equipment will have a "silence alarm" button. Once you've called the nurse, press it. If it's actually bad to press it, the nurse will fuss at you for doing it. If it's not, they won't say a word. (A few will even tell you how to do it, but they're not supposed to.) They're not timed by how quickly they respond to the IV alarm, but by how quickly they turn off the Call Nurse alarm in the room.

Do what you can to stay healthy and sane. It will not be easy, but you have to come out the back end of this alive yourself.

B. B. said...

This is the first comment I've left although I've visited your blog for some time. I've been praying for you, your wife, and your daughter. I asked a prayer warrior friend to pray, too. May God hold all of you, and enfold you in His tender loving care.

Dan said...

Still praying for you all.

Ole Scrapper said...

Stay strong Stilton, don't forget to say your prayers and keep the faith. Glad you can stay together during this troubled time. We think of you and your often and when we do send prayer upward in your behalf. There is much love out here. Thanks for your labor of love to keep us updated... my natural incantation would find me a private hide and pull it in. Your courage is outstanding. Much Love Dave

Kentucky Packrat said...
This comment has been removed by the author.
Mike aka Proof said...

Stilt, although I can sympathize with the boredom and the panic, I just wanted you to know that at least one person got your staple reference AND the RCH measurement you referenced.
Hang in there! God bless.

Anonymous said...

HANG IN THERE YOU HAVE LOTS OF PRAYERS COMING FOR YOU & KATHY & your daughter ma

Nancy Dickerson said...

Oh! Let's all give a cheer for alarms and chemicals and other assorted types of punishment! Honestly, doesn't it seem like you and your family have been through just about enough for a lifetime. May God give you peace and healing. You are in our prayers.

Anonymous said...

Dear Stephen. I am an 86 year old father of 3, grandfather of 4 and great grandfather of 4. The day you were born I was in boot camp at Great Lakes. Just writing to thank you for allowing your readers to share this journey with you; giving us the opportunity to offer prayers and support for you and your two remarkable ladies. In my case you are responsible for giving me he motivation to crawl out of a warm and cozy bed these winter mornings to attend weekday morning Masses that include these prayers.

Anonymous said...

"Downstream Occlusion" usually means some idiot is stepping on the tube, or there's a chair leg on it, or it's just a kink. Whatever someone just did? Don't do that.

I hope that's a joke about smuggled booze being a device for terrorism. Have they not seen any cowboy movies?

We're all thinking about you-all. Tough situation; you're abiding well.

Faith D. said...

All my best.

Anonymous said...

Prayers for Kathy and you. (Wayne in Indiana). My wife has had multiple strokes and I’ve spent a lot of nights beside her (before covid).
But I’ve never endured your situation. Can’t imagine how grueling it is for both of you. Prayers and more prayers!

Bobo the Hobo said...

Wow, Stilt, who would ever think God and the devil were in a competition for Can You Top That? However, being the optimist that I am, I give you some “worse” (?) scenarios (and you gotta feel bad for these guys):

The nursery school worker who has to listen to “Baby Shark” all day;
The Disney World attendant who works in the Small World ride;
The guy who has to formulate and produce any Gwyneth Paltrow’s candles;

And finally (if you ban me from your blog, I totally understand) -

Nancy Pelosi’s gynecologist!

See? Now don’t you feel better? πŸ˜†

Doc Claussen said...

Jeez bud, y'all are really going through it. Keep up the keeping up!

Bob Lee said...

Thank you for the updates and a little humor. We admire the strength of the three of you in a tough situation. Our thoughts and prayers continue.

TrickyRicky said...

I really don't know what to add to the above well wishes. Know that the three of you are still in my frequent prayers.

It's so uplifting to see your incredible and innate humor shine through. I too caught your RCH reference, took me back to my construction days a long time ago. Black Velvet Matters...Ha!

OldTexan said...

When my wife had surgery, not too bad and just a couple of nights in the hospital we had some of the beeping things going on during the night in her room and the next room, the over night nurses were a bit short handed and it drove me nuts sitting in the room with her. Multiply that time ten and it sounds like your situation dealing with Kathy's health and we are praying for the time when the turn will happen for the road to remission. I check in on your site several time each day the the love I read about as you and your family deal with this cancer is incredible. Blessings upon you and your house, the doctors and nursing staff and the loud machines as they do their job.

udaman said...

Gotta keep the sense of humor going. It will help keep you sane, mostly!

Mikey said...

I don't know how you manage to keep up your spirits (without the spirits you really need at a time like this!) and also maintain your sense of humor. Continue the good fight, you certainly have plenty of support from your internet community. (Deplorable Mikey in Florida)

John Yeargin said...

HOLD FAST!, brother.

John Yeargin

Grandan said...

It all comes down to PH and nutrition. Medical poison rarely HEALS. 1/2 teaspoon baking soda in 4 oz. Water morning and night on empty stomach may help. I throw in 1000 mg of vitamin C for good measure.
Blessings to you all.

Average Joe said...

Had a Covid-BS unrelated heart issue when the doc took 38 pounds of fluid out of my chest a couple. Upper heart aeorta total replacement. Bad stuff. Then spent two weeks alone in the hospital.100 percent worse than the surgery recovery. Heads need to roll after this bullshit, that's for sure, starting with Fauci. Worst 2 weeks of my life. Virtually no one, staff or patients there. No one has the right to keep from having Karen's hand to hold when I needed her most. This has been a game changer for me. Prayers for the family, Stilt.

Anonymous said...

It is said that God hears the prayers of children. I have a little boy in heaven and I ask him daily to intercede for Kathy as well as you and daughter J. May God bless you all.

JimC said...

Don't watch what they call news or commentary. You have more than enough to deal with. Hang in there and keep up the good fight. May God bless Kathy with a miracle and restore your better half to you complete.

You and your ladies remain in our daily prayers. God bless all of you.

Stilton Jarlsberg said...

@Readers- I’m feeling like quite the scoundrel today (Sunday) because despite hospital policy I’ve got all of YOU as visitors! Last night was almost comically sleep-free, But then, who DOESN’T have trouble falling asleep with all of the excitement of knowing that Diarrhea Day will arrive in the morning! And boy did it ever! Kathy has already had more outfit changes than you’d see at a Lady Gaga concert. Happily, immodium now seems to be working some sort of miracle, plus I now understand why they put a picture of the Little Dutch Boy on the label. Which I may have to turn into a Johnny Optimism cartoon.

Let’s see if I can do some individual replies (while loving EVERY comment here)...

@John the Econ- I’m alcohol-free for the time being, though not wildly enthusiastic about it. Is it still “12 steps” if you’re being dragged behind a pickup truck?

@M. Mitchell Marmel- True story: my Dad once had a friend who brought over a bottle of homemade wine for my folks to try. He poured my Dad a taster glass, my Dad sampled the bouquet, then he took a little sip and smek-smek-smekked his lips thoughtfully. His pronouncement: “Your horse has diabetes.”

@Bill Moore- Good for you, sir! I genuinely believe that on the other side of all this (and hopefully a good outcome), I’m going to be a kinder person and go out of my way to help others whenever and however I can. Mind you, I haven’t been an asshole up until now, but my perspectives about what is meaningful and important have taken a radical shift. At almost 70, I might finally be turning into a grown-up.

@Kentucky Packrat- As annoying as those alarms are, Kathy and I have agree that I won’t screw around with all of the shing medical equipment and electronics in here. I can, however, hold our door open to annoy everyone on the floor with the alarms until they’re silenced.

@Mike aka proof- Glad the RCH reference was caught. I just knew there would be someone here with scientific training. (Grin)

@86-year old Anonymous- Thank you so much for your service, sir! And thank you for those prayers, which mean a great deal to us.

@Average Joe- I’m so sorry that Covid kept you apart from Karen in a time of great need. I hate, hate, hate this. That being said, I reluctantly support the policy in this oncology ward because I don’t want Kathy to have fought this long and this hard and then be taken out because an asshole visiting the room next door brought in the virus. Similarly, I don’t want to accidentally BE the asshole next door. And din a larger sense, will we EVER get back to what we used to consider normal? I’m guessing no, but maybe that’s because I’m trying to focus all my optimism elsewhere.

Stilton Jarlsberg said...

@Anonymous- I read about the help we’re getting from your little boy in Heaven and words fail me (and my eyes are a bit leaky). Thank you.

Shelly said...

All I can say is keep up with the reporting here, good or bad. Radio silence causes one's mind to overreact. Prayers will continue no matter what.

Anonymous said...

Prayers will be continuous for all...lean on The Lord for your strength...There is a light at the end of the tunnel....Bless Y'all

Maoz said...

First of all, I want to reiterate* -- prayers going up daily for Kathy and Daughter J AND Stilt.

(I try not to overreitirate [re-reiterate?] too much; I keep reminding myself over and over again about it... ;) )

Bobo the Hobo: yuuuuuuck! Hahaha!

Average Joe said heads need to roll, starting with Fauci's. That gave me an idea for a business: Little Tony's Bowling Alley. With their own, uniquely designed bowling balls!

I guess those auditory sleep-disrupters are probably known in the vernacular as "the bleeping beeping".

Immodium -- here in Israel there's a brand of immodium, the name of which is STOP IT. With the tendency of some native Hebrew speakers to interchange "o" and "u", it often sounds like they're calling it STUPID.

Would've loved to have had the chance to meet your dad!

Maoz said...

Oh, and I forgot to add -- Stilt, if you have a little talk with the kitchen staff, ya think they might be game to try making the oatmeal with Clan Macgregor instead of just plain water?

PA Ray said...

πŸ‘πŸΌπŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»❤️

Velveeta Processed Cheese Food said...

Hospital food. Three decades or so ago, my father was in a big-city hospital for repairs after slipping on ice. The surgery went fine, but he was fading fast because he couldn't stomach the food. We started to bring in plenty of meat and taters from outside. He perked up and never looked back. I'm sorry you don't have that option with the restrictions.
Dad had a lot of food biases, dating back to his service in the South Pacific. He particularly hated anything sheep-related, due to the fetid Australian mutton they got. Plus, he was a life-long cattleman, so there was that, too.


Elbarto said...

You must know how Job felt.

Priscilla Garamella said...

Weren't you getting tired of hot, non-lumpy oatmeal anyway? You are amazing to have any bit of humor left in you at this point. Continued prayers for all of the Jarlsberg family. God DOES answer prayers!

Rod said...

My father was a strict meat, potatoes & bread guy and fastidious with his plate; even with his lunch box for work. He would make a big show of spreading his work-lunch all out before him before starting to eat. At a time when he was commuting long distance to work very early, about 5AM, Mom always had his lunchbox ready to go but one day she made an innocent mistake. Instead of putting the cube steak on the bread she put the hotpad on it. He caught a LOT of flack from co-workers when he bit into that; then some of them bailed him out with a bit of this & that. He was appreciative but not real happy with this & that. His return that evening was a bit disfunctional; but Mom knew it was coming. She had a really nice dinner ready and the beast was soon calmed. They went on to have been married 74 years. Hospital food theme reminded me of the hot-padsandwich; & I've had similar servings like that which really WERE some kind of meat.

OLDFART said...

Best wishes for you and Kathy. I will continue to pray for you voth.

Anonymous said...

Heavenly Father, please protect the dear Stilton family, keep them in your care and love, comfort them with your love. This we ask in Jesus' Name. Amen.


TVAG said...

Most anything I could think of has already been said--and better--by my fellow choir members.

I do pray for you and yours daily and will keep my adding my warbling note to the chorus of well wishers and friends.

Remember, "...The impossible takes a little longer."

TVAG

Murphy(AZ) said...

I am so happy for you that the hospital is allowing you to remain with your lovely bride. So many times, we've heard stories of families being barred from the bedsides of their loved ones. I wish for you that your "accommodations" are so sparce. The Stilton Estate will seem palatial indeed when you bring your Queen home.

Our prayers for you all continue.

John the Econ said...

For those of you still on the fence about donating blood, perhaps this will nudge you:

"Krispy Kreme announced Monday it would be offering one dozen, free Original Glazed Doughnuts to anyone who donates blood this week."

https://www.today.com/food/news/krispy-kreme-offering-1-dozen-free-donuts-blood-donors-rcna13285

Patrick said...

Keep on keeping on, Stilt. It's all the advice I have for you, and pretty much all those of us who have trod that ground could do while trodding it. And, when Kim was in the hospital for the various marvels cancer revealed in her body which were to be countered by the marvels of modern medicine: we found the various HGTV series able to take our minds off of what we were going through.

Gee M said...

The other day I ran myself over with my mobility scooter...please don't ask...after testing positive for Omicron and being told my brain was bleeding, I was a few days in the ER and sent myself home...in case anyone says anything dumb I won't notice...funny how uncle Joe seems so dumb with my brain on hold and all.LOL! Kathy...I can now completely relate.
Love you guys!

MSG Grumpy said...

I LOVE your Wedding story, Stil...HAPPY Anniversary by the way.
Prayers for Kathy's Healing and for your continued Blessed Union.
God Bless and Keep the entire Stilton Clan!

MSG Grumpy

Mark McKinney said...

I know that many of us (your followers) are playing for Kathy and for you! Happy Anniversary!