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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
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85 comments:
Hi Stilt!
What a mixed bag.
Sounds like all of you continue to fight the good fight. My VERY BEST to all three of you.
Homeward bound. Godspeed…
No Stilton is good, Stilton!
So happy things are going in the right direction, and equally ticked that you are not getting answers you need. Maybe ask for a conference call among a friend who is a nurse, the Doctor and you? Perhaps a nurse can ask the right questions and get answers that take away some of the stress. And thank you for this update. Prayers continue. G
Coming home sounds good. Let's hope it happens soon! And hope you get your bite right soon, too, so you can give more attention to the missus without being distracted...or extracted!
Stilton, being a primary caregiver (the one who really cares) is no fun. Everyone else is just pulling a shift. Keep on the bastards to get answers, but lots of the time they just don’t have them. Trust God and your instincts. That’s really all you’ve got.
I’ll keep you in my prayers.
Godspeed and carry on!
Good news on the wifey front, Stilt! Keep pecking away at the problem,
(you ol' pecker!) and methinks you'll eventually have a GREAT outcome---
and a once-again healthy spouse!
All the best to you and the missus!
Continuing to pray.
One who has not lived through the experience of a loved one in a serious medical situation has no idea the toll it takes, physically and mentally, on all. We feel helpless because we cannot contribute directly so are left sometimes with only prayers which are often the best medicine toward healing. Stilton,. you have my prayers, all I can give, and hope for Mrs. J a speedy and complete recovery.
Ed
I'll be honest Stilt. Good news from you and your family is better than any commentary you might make on the current state of affairs. You're in our prayers.
Keep the faith. You sure have had a plateful lately. It seems the first 100 years are the toughest. Bless you.
Again, take all the time you need. We'll be here.
God bless youse guys.
Is there a visiting nurse available to get you started at home? When my wife had her hip replaced they sent someone by the house a time or two to make sure she knew how to user her walker, could keep flexibility, and such.
Whatever, I'm sure there's some really good youtube or tiktok videos to instruct. (yes, that line was meant as humor.)
Again, may God bless you and help you through this neighborhood in the vale of tears.
What Rick Nigh said.
And don't forget, we're all keeping TVAG's conga line going!
May God provide you the strength to be the anchor at this time.
Thoughts and prayers are for you both.
Good Luck
How you can manage to say amusing things despite the horrors that you and your family are enduring is just amazing! May God continue to bless and heal your wife and family.
(insert Kermit yay here) I'll take whatever good news I can get... :D
Good to see you're keeping your sense of humor. Remember to take care of yourself, you're not going to do your wife any good if you're worrying yourself sick. (If I knew how to insert a thumbs-up emoji, I'd insert one here.) Still sending hopes and prayers, my friend.
I'm sending you and Kathy healing wishes and prayers, Brother Stilt. May The Almighty shine his light upon you. Amen.
Regardless the circumstances, “home” with its smells, furniture, family, and familiarity is the most comforting thought. However short MRS jus visit may be, I’ll take the win. 👍👏👏👏👏
You and Kathy have a lot of people pulling for you all for a successful conclusion to this health nightmare....prayers and good thoughts.
God bless your family,Stilt. We miss you.
Thanks for sharing with us, your extended family. We are all rooting for both of you.
I pray that all goes well. At least it will make it easier on you both. I know being at home is my kind of thing when I'm a patient. And it will help you too - just to be home. Home is a wonderful word - as is love. Hugs.
I'll be sending good thoughts to the Mrs. And to you, while I'm at it. Good luck!
May she get uninterrupted sleep at home. That helps a lol.
https://www.youtube.com/watch?v=0ZIoriMyLqM
Praying that Mrs J recovers quickly - for her sake - for yours - for your close family and friends - and lastly so that what needs hitting about hospitalization and treatment can encounter your gifts
It's good to hear that Kathy is on the road to recovery. Push the doctors for information, sometimes you just have to get in their face, (with a mask of course!). I hope and pray that all goes well. (Deplorable Mike in Florida).
So nice to hear good news from you. I truly hope the Most High will care for her (and you, ya old reprobate),
BTW, this made me laugh out loud: "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."
Great news Stilton, although the lack of useful information is worrisome and I'm sure, very frustrating. I'm glad to see that the famed Stilton humor is resurfacing, another great sign. I can't wait to hear about the horror on the 7th floor....I think.
Godspeed to all of your family.
Just get a social worker and a family member with you to demand a conference with her doctor/doctors. That is the only way we got answers when my daddy had cancer.
May GOD give you and Kathy the strength needed to continue this battle. HE is with you both all the time. The hospital should also arrange for some kind of home care. STAY STRONG.
All Good News! She'll do better at home than stuck in a hospital around a bunch of sick people. They wouldn't have sent her home unless she is well enough to recover there. Oncology isn't as precise as we might want or wish. There can be a lot of "wait and see" as well as a lot "Hope and Pray". And we all wish for "Hope and Change for the Better".
We'll keep praying and hoping for both of you.
That tooth sounds like a pain in the...mouth.
My best wishes for your family.
I guess the medical profession has come a long way. Daughter-in-law was in the hospital for four months 10 years ago. Wishing the best for Ms. J and you!
Dear Stilton and the Stilton Family,
There are thousands of people on your weblist who are thanking you for maintaining you sense of humor in these trying times both at large and on your own homestead and infusing this humanitarian "vaccine" to us all as a refreshing view of what humanity is supposed to be, showing us how to conquer our challenges.
We continue to petition God for our Stilton family. Peace, rest, good sleep, freedom from pain and nausea, helpful info from the caregivers, tasty and digestable food. Also, big nosed nurses that know how to wear a mask. Love, Glen and Sioux.
We are hoping for the Best for you and Kathy
Praise be to the loving God for healing
My thoughts and prayers are with Mrs J and all of the Jarlsberg family
Loved the classification of "ole reprobate" and the blue veined cheese was a hoot. You Sir are my kind of guy... in the face of the monsters poke fun at them. Love to you and Mrs.. Make the home as warm, happy and blessed as you can. Take your vitamins and sleep as you can. Bless you and yours.
@Readers- I’m here at bedside and Kathy’s fever returned last night but is receding now as she tries to doze. The doctor, in his fleeting appearance, revealed that when Kathy comes home it will only be for a week or so, after which she’ll be checked into the hospital again. Why, for how long, and what this means are the latest frustratingly unanswered questions. So a rough start to our day.
Certainly the roller of life. We pray on both the peaks and valleys.
Thanks for the updates in your furiously busy lives now, hope you can rest & best wishes to you & your family
My thoughts and prayers are with y’all!
It is a rough road ahead for you and Kathy. Just know that I'm praying for you every step along that road. The Lord is with you even more so. Just noticed your added note. Be strong for both of you.
...I am just so moved.
I'm praying for you, Kathy, and your daughter. My heart goes out to you.
As I've said many times, hospitals are no place for sick people. I'm certain that being at home will boost Kathy's well-being substantially. Or at least she'll be getting a better night's rest.
Hang in there. She needs you even more now.
Dare I say Hope & Change? Sorry for the setback this morning. If our prayers and wishes are answered, she will be home for good in no time. And if you can actually hold a meet up, I will be there.
Stay strong, buddy. We're pulling for both of you!
Sending my prayers as well. Hoping a short time at home means better rest for you all.
Blessings and prayers for Mrs. S and you
Good news, after all that! May things improve.
<3
I'm hoping against all reason that the photo at the end of your post today WAS "The Thing on the Seventh Floor!"
Any chance you simply ran into a full length mirror and snapped a panicked photo?
The Conga Line is getting longer with each update from you, and I want you and Kathy to hear us as we snake through the country, though the interior soundproofing is likely keeping our song out. So just imagine the growing chorus of your friends and extended family generating enough positive energy to float the Rock of Gibraltar to the peak of Everest, and both of you back HOME.
Prayers flow irresistibly as the tides of Mont St. Michel!
TVAG
TVAG beat me too it! Figured the photo was the Thing, or you when you saw the Thing!
And just a wild guess but being sent home for a week to recover before the next round of whatever sounds like good news. Means she is well enough to leave protective isolation, and being home is way better than the general recovery rooms where all the other patients are.
Lots more prayers and positive thoughts!
Keeping y'all in our thoughts and prayers...
Keep concentrating on the positive...
Love you and your family! Your humor has sustained me through the insanity of today's politics. Praying for continued good news. God knows your family deserves it.
Keep rocking it!!!
Good news indeed! We're *STILL* rooting for you - both!
Good News!!
Hang in there, Stilton. This is about your wife. Thanks for letting us know how she's doing. We get it.
Stilton, you don’t know me from Adam, been enjoying your blog since day one but I’m not one to comment. You and Mrs. Stilton have been in my prayers. As a dear friend of mine likes to say, I’ve done several laps around my Rosary Beads for you both. God bless.
Hospitals aren’t much fun, are they? I pray Kathy is home soon. Love and prayers to you all.
@Friends- It was an emotionally challenging day today. After an extended run of no fever, Kathy developed a temperature again last night (Tues). Tylenol got things back down where they belong, but until the doctors can figure out and beat the fever thing, she can’t come home.
Since they’ve eliminated most possible sources of infection, today Kathy’s PICC line was removed for testing. The PICC line is a device which allows them to plug in multiple drip bags of stuff (chemo, saline, antibiotics, blood, platelets, etc) without puncturing her skin every time, because the receiving end of the PICC line is attached to a slim tube that runs directly to the heart (to pump stuff around). A handy device, but sticking them in and pulling them out isn’t risk free. Come to think of it, pretty much NO part of all this is ever risk free.
Additionally, the lingering effects of chemo cause multiple problems and physical challenges, and those get wearying. If and when Kathy comes home, she’ll be using a walker and requiring home health visits from a physical therapist (and maybe others?) to start building back her strength and stamina.
We also learned today that the game plan will be for Kathy to come home (hopefully soon), after which she’ll start a schedule in which she’s hospitalized for 3-5 days about every 6 weeks for more chemotherapy and recovery. How long that lasts, I really don’t know - and frankly, we’re not currently ever thinking about much more than the next 24 hours.
As always, your prayers, good wishes, and positive thoughts mean a lot to us!
PS: Yes, I'm the guy wearing the mask in the picture, but I'm not exactly the terrifying thing on the seventh floor. I hope to share that story one of these days.
Make sure your take good care of her. Help her out like rolling to bed over to the stove so she can cook without getting up. That always helps.
stay strong! you two can get through it.... and bit of ganja helps after Chemo, just sayin'
My heartfelt prayers for your wife, you and the Jarlsberg clan!!!
@Stilton, I felt queasy just reading that. May she be home sooner than later.
Just stay focused on the love. We'll keep you all in our prayers.
robert kendall
Not in Texas. Anyway, Stilton is an outlaw, just not that kind!
I live in Colorado where I can toddle over to a dispensary and do my business, but I grew up in Texas. I hope all the power of thousands of prayers and wishes for Miss Kathy work to remove the need...from my lips to G-d's ear... Baruch Hashem.
@Friends- Today (Thursday) was a MUCH better day, and I don't want to jinx it by getting too detailed. But unlike yesterday, everything was moving smoothly. Here's hoping we have more of those!
@Stilton: Excellent! Glad to hear it. Keep those positive waves going, folks! :D
May Kathy's recovery be inversely proportionate to Joe Biden's rapid loss of cognitive ability!
Stilt: In several years of dealings with multiple care facilities with my aging parents I found that the most useful person for information on most topics is the HMFIC "Charge Nurse" in the ward or on that floor. Because of work days and shift changes etc. it can be difficult to know who that is. Doctors are hardly available but usually good if you can catch them and get their attention; but anyone below the "charge" or head floor nurse may not know much except their particular orders. They might still provide some useful information and observations; but maybe not warrantied information. Good luck at home.
still praying for God to bless you with strength and your bride with healing. my wife has angio sarcoma and went through 5 cycles of the red devil. so i know that news like that makes it damn hard to focus on anything except the one you love. i thank God for every day i have with her.
Hang in there and you and Kathy will be in my prayers. God bless you and Kathy. your Coffee couple and Johnny and his dog were some of my favorite cartoons.
New week, new prayers. Blessings for the Jarlsberg Family.
Praying just now for you and Kathy, and will continue to do so. Believe me, you have uncounted thousands of friends who are pulling for you. We do care.
I do hope Kathy has a good week and comes home very soon.
You're an amazing writer, even with all you (two) have been through. I remember the old Reader's Digest, "Laughter is the Best Medicine," and think of how Mrs. J. will beat this wrap with all your help. I'm the caretaker for a post cancer (one never knows for certain) husband and your descriptions are SPOT ON. Thank God there are medical miracles and doctors and staffs who facilitate them... and despite the current state of our country, we're fortunate to enjoy one institution that still functions with precision and true grit. Stay the course and keep finding humor in our darkest hours, both in life and for the USA.
Adding prayers for your entire family. This is a group fight!
Mrs. Jarlsberg has enough to deal with being Mrs. Jarlsberg. Here's hoping she has an outstanding recovery, miraculous even. And thanks for being my go to spot on the interwebs.
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