|A perfectly good Insurrection Day spoiled|
It’s been about a week since my last update and, as usual, I’m pretty much exhausted at the moment but will try to get you caught up.
As you may recall, Kathy has been hospitalized for a week now because her blood numbers (red blood cells, white blood cells, platelets, ANC) just weren’t coming back the way they should have after her most recent (but extended) round of chemotherapy. If you have no immune system nor any ability to stop bleeding, the hospital folks don’t really want you walking around loose. So Kathy has been stuck in the hospital (and stuck repeatedly with needles). Normally she would be injected with a “growth factor” to help speed things along, but it turns out that the growth factor also stimulates growth of nascent leukemia cells, which is really high on the list of things we don’t want. So she has to recover the slow way. Painfully slow.
But that poses its own problems, as was evidenced today. Because Kathy will have no truck with newfangled technology like smartphones, I don’t know her status until I arrive at the hospital each morning. And when I did today (Thursday), Kathy looked unusually wan and opened the conversation with “I have brain bleeds.”
She’d had a weird and bad feeling the previous day which she couldn’t really put into words. Then sometime this morning she again felt really bad and start seeing a star shape in both eyes, as well as stammering when speaking. They quickly ran her downstairs to get a scan (I forget which kind) which confirmed bleeding in the brain. Not massive, but even a little is too much. They weren’t sure if it was old blood or new blood, though I don’t think anyone REALLY thought it was old blood. We’re not talking aneurysm-type blood bombs here, thankfully, but rather a fingertip-sized spot on the surface of the brain, and about 4 other pencil-point-sized spots. At least one of these (I’m not sure which) is near her speech center.
I knelt by Kathy’s bedside as she was explaining this, and paid no attention to the custodial lady who was antiseptically mopping the floor on all sides of me. So when I stood up, I quickly slipped and crashed to the ground (who doesn’t enjoy physical comedy in a hospital room?) upsetting Kathy and causing multiple medical folks to rush to the room, only to shrug off the situation when it turned out to be a civilian who had landed on his ass. In fairness, I told them I was fine, which wasn’t entirely true but succeeded in making them all go away.
Kathy received multiple bedside tests to check for a stroke or neurological damage and nothing significant was found. She was still having the visual problem from time to time, but the doctor said “if it goes away then we won’t worry about it for now.” Okay.
So let’s talk about brain bleeds. To my understanding, which is damn little, they could be caused by three things: the first is that her platelet count was so low, her brain just decided that bleeding would be easy to do. The second is that leukemia cells have migrated through Kathy’s cerebrospinal fluid and taken up residence in her brain, where they encourage bleeding. The third is general bleeding and inflammation caused by a brain fungus, because why not at this point? No, it would be caused by Kathy having no immune system to speak of.
To help figure out the cause, Kathy will be given another series of scans first thing Friday morning to see if the bleeding has stopped (she’s been pumped full of platelets) or is continuing. She will then be given a spinal tap to see if there are leukemic cells in her cerebrospinal fluid (and presumably bathing her brain). Her blood is already being cultured to test for a fungal infection, and among the five (count ‘em) bags of stuff they were pumping into her today, one bright yellow bag was a powerful anti-fungal because it would be a bad idea (really) to wait for a diagnosis before starting treatment.
Unfortunately, the anti-fungal medicine is “a tough one to tolerate,” as we discovered when Kathy got stabbing pain shooting across her back. The drug was disconnected and after Kathy was filled with steroids and benadryl, re-administered with much less pain.
If the bleeding was simply caused by low platelets, then maybe the additional platelets she got today will handle the problem. This is the result we should all be hoping and praying for. If it was caused by a brain fungus, then maybe the drug will knock it out. This too is a highly desirable result. If, on the other hand, there’s leukemia in Kathy’s brain, they will be surgically inserting a port directly into her skull so they can pump chemo in there. And none of us likes the sound of that, am I right?
Backing up a beat or two, the brain bleeds have had a neurological impact - but hopefully nothing too severe or permanent. Kathy passes all of the “I didn’t have a stroke” tests with flying colors, but has some minimal aphasia (difficulty coming up with some words), stammering (particularly when agitated, and why the HELL wouldn’t she be agitated most of the time lately?), the occasional spots in the eyes, and a couple of spells of extended and wandering conversations with people which are cogent but don’t really have relevance to the moment. And Kathy has NEVER been a motor mouth, so I made a point of telling the medical folks “that’s not how she normally is.”
Happily, brains can bounce back from stuff like this - IF the root problem(s) can be taken care of. While, oh yeah, fighting blood cancer. On that front, she had a bone marrow sample taken on Wednesday, and we should learn more about what’s going on in there by about Sunday.
And that was our busy day. Daughter J continues to mend from her surgery and will bravely confront the Texas DMV on Friday to get a new driver’s license. I will be heading to the hospital ASAP Friday morning to offer handholding and, if necessary, another cheap laugh from a spectacular pratfall.
Good wishes, thoughts, and prayers PLEASE.
You and Kathy have my fervent prayers.
My, but that's a lot of stuff to go through! Maybe the Good Lord is front loading this decade so you guys can coast through 2030? We will continue to pray for you all: Kathy that she heals up nicely, your daughter, so she can learn to dribble without the basketball sized growth, and you that your strength and sense of humor will be maintained as you nurse your ladies back to health. Forgive me for quoting Dan Rather here, but, "Courage".
Praying of course.
Praying for y'all
Nothing but good vibes continue to you all, Stilt. Sincerely.
Dr. Frederick Frankenstein: Whose brain did you put in him?
Igor: Err... Abby something...
Dr. Frederick Frankenstein: Abby who?
Igor: Abby... Normal. Yes that's it, Abby Normal!
Dr. Frederick Frankenstein: Are you saying that you put an abnormal brain in a 7 foot tall, 54 inch wide GORILLA!!!???
Dr. Frederick Frankenstein: Damn your eyes!
Igor: Too late.
Praying for you, Kathy, and your daughter...
Nothing funny to say here. Constant prayers for both of you.
Every day, sir. Your family is in our prayers.
Prayers continue. What more can be said? Do try to avoid the floor though,
Best wishes continue. I must say you are a brilliant writer Stilton, even in the darkest of times for you and your family. Sending healing prayers for Kathy and your daughter, and stamina, and whatever else you need for yourself.
After all this is over and you and Mrs J are relaxing on the porch, drinking adult beverages, I suggest you seriously consider enrolling in medical school where you could CLEP the finals. Honestly, Stilt, y’all have had quite the medical education!
Prayers from here for you and your family.
So sorry to hear about this setback - I'll double...no, TRIPLE...up on the prayers.
Lit a candle...
Prayers sent, Stilton! And they will keep on coming!!!
I have no words other than I am praying for the 3 of you and the medical staff around you.
My prayers are sent and my words inadequate.
Peace and health, please Lord.
Are you trying for Trifecta Group Rates on your insurance?
Prayers from here for you and your family. We are asking friends to join in to expand the circle.
God and His angels please watch over your family!
Praying for you, Kathy, and your daughter.
Whispering prayers 🙏 🙏
I am so very sorry that my prayers, and positive thoughts, haven't been the cure. Had brain surgery when I was 23 and had to 'learn' a new vocabulary: hospital closet door looked like a refrigerator, and so on. The words get mixed up and there are still many pauses in-between words: friends know that my brain is searching for the word & sometimes they offer one which can cause a lot of laughter. I know 3 people named Brenda & 2 named Debra & never, ever get that sorted out. I'm now 82 so new people seem to think that I have Alzheimer's or dementia. And so it goes.
Tell Kathy that her 'word search' is normal (for those of us who have had their brains messed with) and all is not lost. There are not a lot of choices so don't fret - at least about 'words'. Swear words are always at the ready. I will pray longer & harder for you and yours.
Hang in there, Stilt--- (And stay off the floor, y'hear?) Prayers, of course.
Sorry to hear about your and Kathy's continued problems, hope all works out well in the end. You amaze me with your continued ability to write and display your sense of humor. Stay strong and keep up the efforts. Never give up!! But then I think you are hard wired not to. Prayers and best wishes always. (Deplorable Mikey in Florida)
Jeez, just when one thinks things could only go up..... Hooping things do go up for you and yours soon.
Prayers and good thoughts continue. Praying for a better 2022 for you and yours!
Sending lots of prayers for you guys and her medical staff.
Thoughts and prayers always.
May God bless Kathy, you, your daughter and all the folks trying to help her heal. Simply can't imagine all the pokes she is having to endure! Will continue to ask for healing for your family.
May God give you and Kathy strength.
Wow! If it weren't for bad luck, you wouldn't have any luck at all. Prayers continue. Remember: "Slippery When Wet" is more than a road sign. They way things are going for you I would suspect that even gravity is out to get you. Beware of black cats. Hell, beware of black coffee.
Be well. (Or as well as the circumstances permit.)
Sorry to hear about Kathy's setback, continued prayers for all your family.
Prayers will continue for you and daughter and Kathy. Has she had the bone marrow transplant? I would be honored to test to see if I could be a donor.
Once again, I realize my various issues are small potatoes. Pulling for all of you.
Leave the floor spinning to pro's like Curly and keep fighting the good fight. Thank God your daughter is feeling better. Continued prayers going forward.
I feel like I got "brain bleeds" just reading that whole thing. I can't even imagine what both of you are feeling going through it.
As always, our thoughts and prayers are with you.
Bless you Stilt. The burden must be heavy and labor intensive. You and Kathy have courage in spades, we pray for you to remain strong in the high tide currents. Keep all your notes and when you're through a book on this trail of tears world be quite appropriate.... heh. Love, prayers, and sarcastic humor now being loaded in the 18-wheeler parked at our back door. Stay tough. Dave in South Dakota.
My wife has I.T.P, a low platelet disorder. From time to time she needs blood or platelet infusions. Sometimes she has Rituxan infusions to 'jump start' the platelet count. Ask about that.
Take this shit one step at a time.
Medical science has made huge, wonderful advancements in the last 10 years!
Prayers for your all.
Wow! Here's hoping your next report will be better news. Sending kind thoughts, strength and lots of prayers...
Prayers continue from this corner of SE Georgia.
Stilton, you and your family have all my best thoughts and prayers. In August this year I lost my wife of 53 years after a four years of multi-problems. I can relate to your battles. Hang in there and God bless.
I must offer a cautionary tale Stilt. My wife went through chemo and radiation for a small bowel tumor. She is cancer free now, three years later with only some residual neuropathy from the chemo. BUT....what they did not tell us, and we did not know, is that chemo exacerbates osteoporosis. And virtually all post-menopausal women have osteo to some degree. It was shortly after new years, and six months post chemo when she slipped on ice and fractured her pelvis is seven places. Six weeks in the hospital, and months of rehab work at home to recover from that. She did not need surgery fortunately, but we now know that her skeleton is as fragile as a bag of pretzels.
I bring this tale of woe only to say that Kathy CANNOT be allowed to "have a fall", EVER! You did not mention that you broke anything in your fall, but neither of us is a spring chicken anymore, and healing up anything takes ever so much longer for us older coots. Stay safe, and take care of yourself. As I've said before, you're no good to anyone else if you melt down.
I have no proper way of explaining how your problems effect me and mine. You are like family....our family. Fervant prayer for Kathy's total recovery is a daily occurence and has been for as long as we have been aware of the leukemia. I live in Lewisville, Texas.And you are part of our lives. I pray that God will place His Holy Hand on Kathy and you.
Dearest Stilton, this is not the news any of us wanted to hear to start this new year. But we deal with what is before us, don't we? I believe you and Kathy deserve Profiles in Courage awards - she for the battle she is waging, and you for your valiant efforts to shepherd her through this nightmare. My prayers continue to be given up for you both.
Continued prayers for all of you.
I am praying for you and Kathy. Why do bad things happen to good people?
Thank you for keeping us in the loop during a time of incredible stress and sadness. Kathy is unbelievably courageous! As are you and Daughter J. I'm flooding heaven with prayers for you all.
Mike aka Proof ...
Just sayin'...it was actually the Cowardly Lion in the Wizard of Oz who first put that forth as a battle cry. Dan merely appropriated it. I have real love for the Cowardly Lion, Danny boy not so much...
I herewith ask you to take one of my future "Reprieves from Death" and apply it to Kathy Jarlsberg, who is much more deserving of an extended life. Really.
Stilton...G-d bless your house. Things will work out...Baruch Hashem
I am praying ass I write this, for Kathy's healing, and for your strength to handle the hard times you are going through, in Jesus' Name.
We continue to pray for your family. I am amazed at your ability to retain a sense of humor in light of your problems but I'm thinking that that's one of the methods God gives you to help you cope. Kathy and Daughter J. are lucky to have you - and you, them.
A bad report, but bravely delivered!
I must ask--rhetorically--which precautions do you take for "sterility" prior to visiting each day? Do you wear fresh scrubs, a mask, etc, before you go to her bedside?
As well as staff appear to be keeping the place clean, there's really no measure too extreme at this point to keep her safe from all the errant bugs out there.
I know it sounds dumb, but have you considered giving your clothed self a light spray of Lysol or other disinfectant before entering Kathy's room? Not exactly the bewitching cologne that drives women mad, but perhaps not too extreme an additional measure of protection.
My sincere prayers for all hands in your storm tossed boat. May you enter safe harbor soon and for good.
Praying as hard as I know how and begging prayers of others. May God be with you all,
Stilt....you and Kathy and J are now in our international prayer group... in the U.S., Australia, the U.K, Israel, et al. Here is the prayer that has gone out on behalf of all of you:
Lord, we come to You again today, pleading and beseeching help for this family, for Kathy and for her daughter, J who just got out of the hospital herself. We know that You are already aware of Kathy’s illness before we even come to You, but You tell us to ask and to knock and the door will be opened unto us. In following Your Word, we are sending tendrils of gold in prayers to Your throne again for Kathy, for her daughter J, and for her husband.
These last two years have brought so many of Your children closer to You because of all we’ve been through, losses too numerous to mention, and illnesses that have taken so much time to recover from for many of Your kids. You’ve heard all our prayers, You know our bodies and how You created them so perfectly, and You know the pain of having loved ones suffer and being aggrieved over the inability to do anything that will help. But we have YOU, and we come to You in and for all things, to praise, to worship, to glorify and to ask for Your help.
Kathy is suffering, Dear Lord, she needs Your gentle touch and breath of healing. She needs Your angels surrounding her and ministering to her and to her husband and daughter. To her daughter J, for a healing touch as well, but also for comfort as her mother lays in a hospital room being treated for leukemia and now other problems from same. You are our healer, our great physician and we ask that You will help Kathy, and rid her of this disease. This small family needs a miracle Lord!
Surround them with Your comfort, Your love, Your Holy Spirit and give them Your peace, a peace those who belong to You know so very well. Especially comfort her husband, give him strength to see Kathy through this ordeal, and for all of this precious little family to draw even closer to You Lord.
As always, all praise, all glory, all thankfulness, and all blessing go to You Lord, the one true God.
Thank You for hearing our hearts and prayers Lord! Asking as always, in Jesus’ Holy Name. Amen and Amen
All the best....
Continuing daily prayers for you and all your family....it is a long winter, however, be assured that spring will come...
Many more prayers for your family and you.
Stilton, you have my deepest respect for your fortitude and loyalty to Kathy. I can't imagine the trials and tribulations all of you are going through. Prayers continue unabated from this corner.
Praying for you all
I'll keep you both in my prayers Stilton. I've been following you for years, but this is the first time I've posted. Hoping your Kathy comes through all this soon.
Happy New Year SJ.., Thank God, you, Kathy and Daughter are all alive to see another day..days become weeks, and weeks..you know..the thing.., but seriously.., You are the Angel for your family.. Please take care of yourself, when you can.., you have so much on your plate..baby steps my friend..
Prayers for All..
Take Care Amigo..,
Danger Will Robinson..
@Readers (who are all family at this point)- Thank you so much for lifting us up with your comments, prayers, advice, and jokes (yeah, I'm looking at you M. Mitchell Marmel). This was an especially challenging day, in part because Kathy needed that spinal tap / lumbar puncture to help us know what's going on in her brain. Unfortunately, they can't do the procedure unless her platelet count is high enough - and she couldn't get platelets today because the hospital was out of them. Well, there was one bag, but that was being saved for a critical emergency, like if Careflight flew in a guy who'd lost his arms in a threshing machine. The COVID crisis has greatly reduced the number of people giving blood and platelets (maybe because the government is telling them they'll die if they leave the house). So it will be Saturday before she can even have the test, after which things may get really intense.
In the meanwhile, let me respond directly to a few comments while again reassuring you that ALL your messages are read and greatly appreciated.
@Julie- I'm so glad that you're still with us and have friends who can appreciate a bit of word confusion. Our daughter is a speech therapist who is trained to help with things like that, so if Kathy has lasting problems we can at least get free treatment! Though happily, today she wasn't showing any neurological problems.
@Velveeta Processed Cheese Food- It's amazing the way this situation has demolished the many things that used to cause me anxiety. This is a rotten way to gain perspective, but it's certainly effective.
@Ole Scrapper- My notes have become increasingly brief and confused, so I don't know that there will be anything book-ish to come out of this. Although I like the sound of the title "The Big Freaking Miracle That Came At Exactly The Right Time."
@John Yeargin- I'm not sure about Rituxan but I'll ask. I know Kathy was getting some kind of infusion today that improves clotting but wasn't platelets.
@Pete- I am so very sorry for your loss. Kathy and I have been together for almost 50 years. There isn't so much a "her" and "me" anymore, just an "us."
@Greg- Kathy already had osteoporosis before all of this started (and had previously fractured her spine and broken a wrist). We were already paranoid about falls, but we'll be taking even more steps to avoid them in the future.
@Pip McGuigin- I genuinely feel like we are family here, by choice. Which is why your support means a lot to me.
@TVAG- As far as my sterility protocol, I'm almost certainly not doing enough. Oh, I'm good with the hand-cleaning, mask-wearing, and avoiding other humans thing, but I'm not spraying myself with Lysol - in part because the hospital already strikes me as having "good but not great" sterility procedures and I'm not sure that what I do will make that much difference (although I'm very, very careful).
@Joan Swirsky- I seem to have something in my eye... Thank you (and your entire group) for what you're doing.
@Anonymous- I feel less like an angel than a pack-mule these days, but consider myself fortunate to be able to shoulder as much of this as I can. People quite rightly tell me to take care of myself, and I try to - but there are so many things that need doing which can't be allocated. Which is why at the end of a long day I spend a little extra time on this page to soak up additional strength and support from you and everyone else here.
@EVERYBODY- Thank you!
Prayers and best thoughts. Y'all are on my Sunday prayer list as well.
Saying prayers for you both. Hang in there, both of you!
May the Lord continue to be with you!
Stilton.....prayers for you both as you travel this extremely difficult highway. My wife has had 4 strokes and while everything is not perfect, God has blessed us. We’re home together. And yes the human brain has amazing recovery power! Be strong!
Continued prayers! Wayne (in Indiana!)
You may not get a comment from me every week, but you, your wife, and your daughter are always in our prayers!
Prayers continue to ascend.
Heal. I saw, Heal.
As said above, prayers for all of you continue, we love your humor and want the best for you and yours.
We are in your corner for the long haul. Love and prayers. Glen and Sioux.
Stay strong, my friend.
Callahan's Ecumenical Prayer Team putting the prayer machine in low gear for a long, hard pull!
Hi Stilt. I haven't posted a comment for a while. For reasons I won't bore you with, my opportunities to get online are inconsistent. But rest assured, though the internet access may be spotty, the prayers are not. Every day Kathy bat [=daughter of] Jane, and Daughter J, and Stilton get special mention.
There's a Yemenite Jewish song to the effect: Even if the doors of the nobles are locked, the doors on high (i.e., the gates of prayer) are not locked. It was written something like 400 years ago by Shalom Shabazi, and recorded in modern times by Ofra Haza. Sometime during your vast leisure time it might be interesting to give it a listen (even if you don't understand Yemenite-accented Hebrew).
And fer cryin' out loud, tell those custodial ladies to stop leaving banana peels on the floor!
Forgot to mention the name of the song: "Im Nin'alu"
Prayers are flowing for your bride, daughter and you...
Praying for the Jarlsberg family in their hour of need.
A new week, a new set of prayers for the Jarlsberg clan. I'm eligible to donate blood again this week, and will be doing so with Kathy on my mind.
Praying for all y'all, and plan to call the Red Cross to see if they'll let unvaxxed folks donate blood/ plasma.
@chipmunk, you do not need to be vaxxed to donate blood. The only restriction is that you can't currently be suffering COVID symptoms or have been vaxxed within the last few weeks.
That you can stay upbeat at all with everything your family is going through certainly shows your true character. Kathy did very well in choosing her life partner. I am praying for all of you, for Kathy's and your daughter's full recoveries and for your strength in navigating it all. May God hold you all in His arms and send healing and comfort.
@Friends- The days continue to be harrowing but not insurmountable, and we still continue to hope that one of these days we'll get some good news. In the meanwhile, I thank you again for your ongoing support and prayers. You folks are the best.
Ditto what Priscilla said.
God bless and hold all of you!
Asking for God to take better care of you and your family.
My wife has a brain aneurism several years ago.
They clotted it up with arthroscopic surgery to install a platinum coil and it worked.
The cerebrospinal fluid eventually mopped up the spilled blood, just like its 'sposed to.
Busy doctor dude needs a lesson in family communication.
I pray for her health and your family's peace and strength.
While Kathy is a one of a kind - so are you Stilton
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