Friday, January 14, 2022

Any (Cranial) Port in a Storm

The “Ommaya” was named by the first Italian patient to see himself in a mirror afterward

Greetings all, and welcome to the weekly/weakly meeting here at Stilton’s Whine Bar.

As I write this, I’m sitting in Kathy’s hospital room all by myself. I arrived early today (Thursday) hoping to catch a glimpse of one of those elusive will-o-the-wisps called “doctors.” That didn’t happen, but I did find hospital personnel preparing to roll Kathy (and her entire hospital bed) out the door to take her to brain surgery. Kathy was in a cheery mood about it all, because hospital life is so dull and depressing that she actually liked the sound of invasive brain surgery simply because it would be something to do.

So let me back up a step or two. After hearing nothing from anybody about anything ever, the doctor made his pop-in appearance yesterday and started, jovially, “Well I guess you heard about your cerebrospinal fluid and...”  I cut him off to say we hadn’t heard about that, how WOULD we have heard about that and, by the way, we still haven’t heard results from other tests taken a week ago.

“Oh,” chortled the doctor (a ringer for Kenny the radio station manager on the Frasier TV show), “there are cancer cells in your spinal fluid and brain. Thought you knew. So we’ll look into putting an Ommaya chemo port directly in your brain. Hang in there!”

He wheeled to go, but I spoke up - wanting to know the results of other tests. And whether this implanted skull-port would help the lesions on Kathy’s brain. And mostly, with all of this latest round of crap going on, was Kathy still in the running for a potentially life-saving stem cell transplant?

“Ooh, probably not. Yeah, that’d be hard” (he had one foot out the door and was so, so close to escaping).

“Because,” said I, “if there’s no hope or chance of recovery, then we’re really not interested in brain surgeries done just for fun.”

“Understood. That’s certainly something to talk about.” And POOF...he was gone.

So Kathy is currently having a hole bored through her skull (there are youtube videos you can watch if you’re curious) to make it faster and easier to pump toxins directly into her brain, unlike the slower filtered process by which the rest of us receive brain toxins from the media.

In order to try to stay in some sort of communication, I’m now trying to answer my cellphone when it rings, though the odds of my doing so successfully are pretty much nonexistent. Yesterday I got a call (and I never get calls) which I fumbled to answer thinking it might be something critical from the hospital. Instead, it was a telemarketer who wanted to talk to me about funeral services. I interrupted the sales pitch in my best Liam Neeson voice and said, calmly, coldly, and sincerely “if you ever call my number again, you will be using your own services.”

Which brings me up to the present for now. I’m in an 11th-floor hospital room crammed with the bric-a-brac of survival: Nutty Bar wrappers, coffee cups, toilet paper, ubiquitous bottles of Purell, aging newspapers, and biohazard wastebaskets. Next to the spot where Kathy’s bed should be, there’s an I.V. Stand which is making a goofy two-tone clown-horn honk every 15 seconds to say “Hey, the person I should be dripping into is missing!” I have a vague fear that if I turn around, it’s going to be Tickles the Clown, who has come to take me away for my sins against man and medicine.

And now it’s time for a really wretched coffee refill and more waiting. I’ll try to add more to this when I actually know something. 

——

About a half-hour after writing the above, I got a text from the surgical team that all had gone well. And within an hour, Kathy was back in the room with me - wide awake, happy, smiling and laughing. She had a white bandage covering the new addition to her noggin, but nothing huge. And while our overall situation hadn't changed, we still enjoyed a great day together - in part because we actually had something to talk about ("Hey, they drilled a hole in your head!") and because we could focus on just the events of the day rather than bigger worries. Which, it turns out, is a life skill I've always needed to be better about and am finally learning.

A fun moment: when Kathy was wheeled downstairs to one of those curtained holding pens before surgery, a nurse came in to check on her and Kathy told her, with a perfectly straight face, "I'm here for a routine colonoscopy." Apparently, this put the nurse into a moment of confused agitation before Kathy let her off the hook. Is it any wonder why I love this woman?

53 comments:

  1. Glad to see Kathy is still maintaining a sense of humor. Are you guys trying to bump Job off the Guiness Book of most problems in a lifetime?
    You may be succeeding! Your readers are still holding you all up in prayer. Cheer up! It could be worse! You could be Nancy Pelosi's gynecologist!

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  2. Keep your collective spirits up.

    We're all praying for Kathy and you.

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  3. “…we still enjoyed a great day together…”

    I’m not entirely sure why, but this made me insanely happy. God Bless you both and wishing you many more great days.

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  4. So glad to see that Kathy can inject some humor into this maddening experience.

    Prayers and wishes, JRMD

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  5. Prayers my friend to you and yours!

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  6. When I read this latest report all I could think of was those marriage vows of "in sickness and in health..." This is what true love is all about. May God watch over you and Kathy. Sending prayers for you both...

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  7. Stilton, you and Kathy are both something else. You’re right, it isn’t any wonder you love her. God bless you.

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  8. Yeah, a wicked sensayuma definitely runs in the Jarlsberg family.

    You keep hanging in there, and I'll keep with the positive waves, Moriarty. ;-)

    Johnny Optimsm idea: "Trepan? I thought he said BEDPAN!" :D

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  9. My G-d shower you, your family and your readers with His healing grace/angels to love, protect and heal. You folks are really special.
    G-d bless

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  10. Look on the bright side (yep, I found one!)...you may win a Pulitzer for Johnny Optimism after all this new material!
    Glad to hear spirits are up, even for such weird reasons; I await better times ...

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  11. I wish I could do more than thoughts and prayers, but pray I will.

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  12. And they said your humor wasn't cerebral.
    We'll continue with the prayers for Kathy and for more good days to come.

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  13. Mrs J has quite the fan club here ….. oh, and you, too. 😉

    Continued prayers for the best!

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  14. (Cerebral sense of humor -- Good one, Kent!)

    Well, if in the past I may have wondered whether Stilt's sense of humor rubbed off on Kathy, I think the preponderance of the evidence shows perhaps that it worked the other away around.

    Or...more likely, they both started out with Good Humor Genes. (And I bet you all thought it was ice cream they were selling from that truck!)

    Heavy-duty prayers continuing.

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  15. While Kathy's humor comes through as the highlight of the day, the overriding theme is the love that you have for each other. There was a time when I would have done anything for that kind of love and now, as I move closer to the end, I have found that I do, indeed, have it. You are an amazing pair and we will continue to pray for you. God bless us, every one.

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  16. And speaking of telemarketers (I'm still getting 5 to 10 calls a day), now when they ask "can you hear me OK?" I just say "No, but thanks for asking", and hang up. Prayers for you and Kathy still incoming.

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  17. Again, Stilton, you show an amazing and humbling strength in the midist of personal adversity that would crush a lesser person. The last paragraph was especially powerful and moving.

    In a lame attempt at some levity, there's a meme I would have like to have posted here, but do not know enough enough abut this platform on how to do so.

    But the meme goes like this: When the day is going badly, remember, somewhere there's a gynecologist who has Hillary Clinton as a patient.

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  18. Am amazed that you retain your sense of humor thru all this. May God continue to give you strength.

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  19. Friends........more prayers for you and your family.
    God’s silver lining is EXTREMELY difficult to see but keep the Faith. More prayers!

    Wayne in Indiana

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  20. "Am amazed that you retain your sense of humor thru all this. May God continue to give you strength." I couldn't have put it better than that. I hope the procedure brings relief and quick healing to your wife. God Bless the both of you.

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  21. Prayers for you and your family.

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  22. A sense of humor at a time like this. Wonderful! May God be with you and the family during these trying times.

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  23. Wow, I can see clearly why you love Kathy. With all the turmoil and baloney she has endured, (plus having a sickness requiring hospitalization and treatment), she still has the strength to be jocular... I love it.

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  24. I am happy to see your humor once again "goes to eleven." The description of the doctor "visit" to Kathy's room is priceless. Still praying and I still have "hope" that "change" for the better will come soon.

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  25. Continued prayers for brighter days ahead.

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  26. Hang in there Jarlsbergs. Praying for y'all and reminding myself that no matter what crappy thing is happening, there are always people dealing with crappier things.

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  27. I'll certainly continue prayers for you and Kathy, hope for the best. And to add to the gynecologist jokes above, Joe Brandon is more confused than Michelle Obama's gynecologist. Stay strong.

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  28. Once again I thank God for the medical technology that is out there that can help with issues like this. I also thank God for the fact that I have a good blood type and can donate on a regular basis to help people like you that I "know" and even the ones I don't know in any way shape or form. If you can please donate for the above reasons. If you haven't donated before it really doesn't hurt (think light pinch in your elbow) and takes on average maybe a half hour from the time you walk in the door.

    Prayers for you and your family and the medical team working to make things better.

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  29. God and His angels are wrapping you and your family with layer upon layer of unlimited love. Those of us who are earthbound with you will offer our continued prayers for everyone to make it through this mess. God grant you all better days.

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  30. Simply prayers continue, stay strong. Kathy is an exceptional woman. God bless all three of you.

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  31. I'm not sure why, but after reading about you and your family I feel better - more inspired, more positive, sort of a spiritual renewal. Maybe it's because your love, concern, and compassion - and yes, your sense of humor - shows that the human spirit is resilient and uplifting, even when facing a daunting state of affairs. Thank you.

    Stay strong!

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  32. As long as Kathy maintains a sense of humor, the fight is worth fighting. God bless her. And you.

    “Because,” said I, “if there’s no hope or chance of recovery, then we’re really not interested in brain surgeries done just for fun.”

    I was once faced with this decision regarding my father, who had a terminal condition and was in no condition to be able to make the decision for himself. Mrs. Econ & I often talk about such scenarios should either of us find ourselves there, and what we'd want the other to decide for us. We pray we never find ourselves there.

    Keep the humor.

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  33. Oh my goodness Stilton, what a sorry bumpy road full of potholes you all are traveling right now, prayers for a safe journey for Kathy and brighter days in this new year.

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  34. Your collective travails are beginning to sound like an old radio broadcast of a baseball game with each team scoring one hit as the game goes into extra innings. How long will this keep up? When will the Home Team finally clear a four-bagger and put this game away for good?

    As others noted, it's heartening to know you can both find something to laugh at during this s---storm of complications, and that kind of faith and courage should help you both clear any obstacle.

    My own prayers continue--not just "happy thoughts"--with the confidence that the harder the fight, the greater the victory.

    Promise us you'll never go silent--you're an inspiration and model for us all.

    TVAG

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  35. Oh my! A routine colonoscopy--through a port into her brain! Honestly! That was very funny. Might as well laugh, huh? As for the doctor . . . wonder if you got some zip ties and hogtied that sucker! Fix his wagon!

    May you and Kathy be blessed with peace and better health. God is in control even if we can't see out the windows.

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  36. Wow, what a terrible doctor! My wife went through something similar 3 years ago and I never once saw a doctor. Not sure which is better.
    Do you have local friends and neighbors to support you? Like with meals and transportation? Let us know if there is any way we can help.
    More prayers, virtual hugs and positive thoughts headed your way...

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  37. All of the above for you three. Oh it is a shame no one can be with you in person at this time. Do they not have any social workers that could call a meeting with the doctors and you and Kathy? Remember even Alice got out of Wonderland. If I remember the story correctly. We all love you all and will continue praying for healing.

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  38. Good to see that Kathy hasn't lost her sense of humor. Still praying for y'all, my friend.

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  39. OMG Stilton. I cannot believe how you and Kathy have been able to maintain an incredible sense of humor throughout this horrific and extended ordeal. My hat is off to both or you. It goes without saying that the three of you are in my prayers nightly.

    I would like to second the admonition of John25mm about blood donation. It's easy and quick. I've donated every 2 months for many years. I'm going in Tuesday for my first experience with platelet donation. It's more like a 2+ hour procedure and I have avoided it until reading of Kathy's tribulations. Plus there is currently a big shortage of platelets due to less donations during Covid, and I have an ideal blood type for platelets, so time to step up....

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  40. Your wife truly does rock. I wish you all the best...

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  41. I have always enjoyed reading your views on whatever topic pops out of your head, but I am sorry that your family is going through so many challenging events in a short space of time. May you continue to manage this with courage and laughter in the face of adversity. My thoughts are with you and your family. Thanks for allowing us to support you during this difficult time.

    Just another person that cares about those in need

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  42. Yes, concentrating on this moment and situations at hand...
    God is with you and your bride through the storm...
    Lean on His strength...
    God has a plan....
    Sending up many prayers continuously for y'all....

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  43. @Readers- Today (Friday) Kathy got misty-eyed in the best possible way reading your comments. They were especially welcome because it was a difficult day - not because of any new medical woes, but because it was another depressingly dull day of hospital life and feeling stuck in the mud. Who knew that surgery was so entertaining?

    The area where the port was inserted under her scalp looks for all the world like a stitched-up bite from Hannibal Lecter, but everything is healing nicely and the port should be ready to use in a few days. Oh boy, more chemo!

    As usual, I'm writing this as the day draws to a close and I'm only half awake. So I can't respond to every comment individually, but I'll cherry-pick a few in the spirit of conviviality...

    @M. Mitchell Marmel- I think the trepan/bedpan gag will work better if the order is flipped:
    Doctor: Did you give the patient in 301 a bedpan?
    Nurse: Bedpan? I thought you said trepan.
    Doctor: Ha! He needs that like he needs a hole in the head.

    @Gee M- I feel like I can produce a LOT of new Johnny cartoons when I get the opportunity.

    @Paul Donohue- Thank you for the nice words, and congratulations on finding that love in your own life.

    @Fred Ciampi- WARNING TO EVERYONE: If a telemarketer asks if you can hear them okay, NEVER SAY "YES." It's a scam in which they record you saying "yes" and then use that as "proof" that you agreed to have your phone service changed, or authorized a purchase, or agreed to some wildly expensive subscription. Don't get fooled!

    @Shelly- Thank you!

    @Greg- I remind myself of the same thing daily.

    @John25mm- I'm absolutely eager to make my first blood donation as soon as I can. There is a terrible blood shortage happening right now because of Fauci's "Pandora's Box Plague" and I'm scared for the people like Kathy who rely on transfusions just to stay alive. If there's anyone undecided about donating blood, this is a great time to get away from home for an hour and come back as a hero.

    @CenTexTim- Thank you for the very kind words.

    @John the Econ- It's important for all of us to have those talks about unpleasant choices and eventualities. And by "unpleasant" I mean sheer torture. The point of all the suffering inherent in being a patient can't simply be to prolong the suffering.

    @TVAG- At this point, I think it's physically and emotionally impossible for me to "go silent" for any length of time. I desperately need the connections, encouragement, and support of this wonderful community of friends.

    @Nancy Dickerson- I'd rather the doctor do his job well than communicate well. But there are a lot of doctors who can do both and I'll admit this is enormously frustrating.

    @JohnF- we have local friends and family willing to support us, but COVID makes it too dangerous to interact with them (because of Kathy's decimated immune system). If not for the plague, we'd have a lot of help. As it is, well, we're all doing the best we can.

    @TrickyRicky- If I'm able to donate platelets when life allows, I'll damn well do it - and I'll buy the drinks for anyone who ever tells me they've donated platelets. A single bag of platelets can make the difference between life or death, or determine whether or not someone can receive critical surgery with a reasonable hope of not bleeding to death. I feel like an effing idiot for not having really known or felt this previously in my life. I can never catch up on the blood and platelets I could have donated, but I sure as hell will try to do my share from now on.

    @EVERYBODY- You are the best. You are there with us in this fight every day and are propping us up more than you know. Thank you.

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  44. God & Jesus has thanked you for Kathy, and has thanked Kathy for you. Your love of each other and your laughter in all of this madness will prevail. Blessings to you both, and I promise to never complain about my medical madness again. Mary

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  45. She is quite a gal, I think.
    No hole in the head jokes. I promise.
    Prayers continue.
    .
    NSF

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  46. Among the multitude of mitzvot (could translate as "good deeds") you're doing, Stilt, is inspiring people to take such life-saving actions as donating blood or platelets (see e.g. TrickyRicky above). And yes, Kathy, you also share in doing this mitzvah.

    There's a saying that whoever saves one life, it's as if they saved an entire world. So by inspiring the aforementioned blood/plateletlet donations you two have racked up quite a tally of worlds!

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  47. Oh crap! Kathy reads this stuff? Next time I'll have my pants on.

    Yes, if you can give blood, please do so. (I'm scheduled to go Wednesday. Again, I hope Kathy likes Costco pizza) Most hospitals right now are down to somewhere between less than a day's supply and nothing, so it's vitally important. Most are not the least prepared for any kind of disaster. To give, you only need to be healthy. They don't care about your vax status beyond knowing which shot you got if you did get one, and that it was more than a couple of weeks ago. The life you save may be someone in your town, Kathy, or someone across the country. You never know. But you can know that you saved somebody for that one hour out of a day. That alone should be reason enough.

    Talk of unpleasant choices: Indeed. As I believe we've conversed before, the gift of my faith is that it has indemnified me from fear of death. Unfortunately, that doesn't help much with the process of dying up to that point, of which I am quite scared.

    Indeed, in our humble opinions, torture no reason beyond a short interval of time with more torture is torture by choice.

    Mrs. Econ & I are fortunate that we have no barrier talking about such things and are intimately familiar with each other's feelings and expectations on the subject. It's a blessing to have a spouse who understands and is prepared in this regard. I am grateful that you and Kathy have such a relationship. It is, in fact, what "love" is really about.

    And since Kathy is reading this: You really are in my thoughts and prayers. Anyone who puts up with a character like your husband must be a very special person indeed. God bless.

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  48. Kathy, this goes way back to when Stilton first "hired" Busty Ross to help with office chores. I told him his wife (I didn't know your name then) was a Saint. If you didn't know about it then; FYI he ready agreed. Years later it seems you both are.

    Ya'll hang in there. Long ago ours was nothing like what you're dealing with (well sort of like it I suppose); but both my wife & I had each other's backs as we both got through a rough three years... each the patient alternating with care giver in-turn; and we made it. Tt's fabulous what all can be done; and that was 19 to 22 years ago; Has to be better now. And we're really impressed with continued senses of humor in all this. That really helps. If it helps to also know: That was all in Texas. Texans are Nice & Friendly and Texans are Tough.

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  49. As a silliness on the blood donation issue I once had a Soldier that was getting on my last nerve and jumping up and down on it. I calmly told him that "I had just donated blood and they say that when you donate blood you save up to three lives. So if I take you out of the gene pool I'm still up by two." He laughed a little till he realized that there just might be serious. He was smarter than he looked.

    Again prayers to you and all of your family and the medical team working to make things better.

    I would also like to thank the others here in restoring my faith in humanity by caring for and wish well on Stilton and his family.

    If you can't help Stilton in person look in your own neighborhood and see if there is someone you can help there instead.

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  50. Made me laugh with that one, I can just imagine the look on the nurse's face. Keep your spirits up and look ahead. We are all with you in thoughts and prayers daily.

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