They say that “time flies when you’re having fun” and I can assure you with great confidence that the obverse is also true: “time drags like a drugged snail pulling an anvil uphill when you’re having no fun whatsoever and help help help get us the hell out of here.” And what that phrase lacks in style, it makes up for in veritas.
Kathy is doing "well" in the sense that she can and has felt even worse, but that's about as high as the bar goes. It's been two weeks since she completed (most of) this round of chemo, but the "good" blood numbers aren't coming back yet. White Blood Cells: 0. ANC (a healing factor in the blood): 0. Her platelets are very low and all borrowed - she gets a bag or two of them every day. After her previous chemo session, her platelets didn’t come back at ALL, which is what landed us in the hospital nearly two months ago.
She's very weak, though did a little moving around out of bed for several days now. A couple of jaunts from the bed to the door and back, and then a walk around the bed to sit in a chair for an hour (and yes, sitting in a chair is hard and exhausting).
Her doctor came by Wednesday morning and answered a few questions more directly than usual. He said her odds of actual recovery are "very low. Not zero but very low." Additionally, when we ask if she's still a possible candidate for a stem cell treatment, we get a real "it's not impossible, but it's not likely" vibe.
Everything rides on the blood numbers at this point. When Kathy's good blood cells start reproducing again, the goal will be to get her healthy and strong enough to go home for a couple of weeks (perhaps after a short stay in a rehab facility here in the same hospital), after which she'd come in for another 5 day hospital stay and chemo in hopes of finally getting into remission. After that? Who knows. Remission is an unpredictable thing which could last a year or more or just a couple of weeks. On the other hand, if it's the bad blood cells (called "blasts") that start coming back in earnest over the next few days, then it's likely that we'll be looking at palliative care.
Everything rides on the blood numbers at this point. When Kathy's good blood cells start reproducing again, the goal will be to get her healthy and strong enough to go home for a couple of weeks (perhaps after a short stay in a rehab facility here in the same hospital), after which she'd come in for another 5 day hospital stay and chemo in hopes of finally getting into remission. After that? Who knows. Remission is an unpredictable thing which could last a year or more or just a couple of weeks. On the other hand, if it's the bad blood cells (called "blasts") that start coming back in earnest over the next few days, then it's likely that we'll be looking at palliative care.
Which, it turns out, simply means managing and slowing symptoms rather than trying to cure the disease. I'd always assumed that palliative care simply meant giving a dying person opiates to ease their passing. And that can be a thing too, of course, but it's not what we're talking about at this time. We hope.
A vaguely positive development is that I’ve established somewhat better lines of communication with the doctors and hospital staff to try to get some freaking questions answered. And I also took the opportunity to wage a few complaints about issues you’ve already seen documented here. Good idea? Bad idea? I genuinely can’t tell the difference anymore.
Everything now rests on seeing what Kathy's bone marrow does when it starts to recover (which gets harder and harder to do after each round of chemo - and she's had four major ones now - which is why this current wait is so agonizingly slow). As always, your hopes and prayers for those blood numbers, Kathy, and our little family mean the world to us.
FRIDAY MORNING UPDATE
The doctor just made his mini-visit to the room. He said another bone marrow test will be done on Monday, the results of which will determine whether continuing on this treatment path has any point. So yeah, our weekend is off to a flying start.
HITTING MY CRAZY BONE
It only seems fair that I try to find and share a little humor with you, though the pickings around here are slim and mostly weird. Still...
• When talking to our doctor’s second-in-command about communication issues, I realized that whenever I told her something the doctor had said to us, I was doing it with his Indian accent. I apologized when I realized I was doing it; she kindly said I did it very well. Which is true. Maybe I should grab a stethoscope and start giving second opinions around here.
• A funny thing I’ve noticed is that if you walk to your car carrying a cardboard Starbucks cup and shortly thereafter walk back from the car carrying the same cup, nobody wonders if it was only empty on the way to the car.
• It turns out there are no movies or TV shows that you really want to watch when Life gets this scary and crappy. So in the evening, Kathy and I turn on Youtube videos (mirrored to the television) with beautiful nature scenes and relaxing music. Which is pretty soothing until you remember Edward G. Robinson’s final scene in “Soylent Green.”
• The difference between a Duck Call and a Nurse Call is that sometimes ducks come.
68 comments:
OMG the Indian accent! ROFL! Too bad they probably wouldn’t let you wander the hallways with a stethoscope, Robin Williams style! It would be so much more fun than watching Soylent Green…er, nature scenes. Love you guys, keep hanging in there. —Suzy
….and hey, my account finally works for commenting! Apparently I needed to use the web version instead of the mobile version.
@Jill of all Trades- I can’t help it, I’m a “voice guy” and have always expressed myself in a wild variety of cartoon voices, accents, and celebrity impressions. This was useful in my radio days but is less so when creeping out people who don’t know me. I can’t visit anywhere without picking up the local accent by osmosis within a few days (notable cases being Hawaii and South Dakota).
And it’s good to see you’ve figured out the technical bugaboo. Glad to have you here! (But then, you already knew that)
Sorry you’re all going through that. I came from Ireland when I was very young. My normal accent is Northern New Jersey but my wife laughs because it comes right back if I’m talking to people from The old country or sometimes if I get really annoyed. Now we live in the South and guess what?
"The difference between a Duck Call and a Nurse Call is that sometimes ducks come."
Funny, but not in a good way! Better than a cattle call, I guess!
The one bright thing in this whole morass, is that before, there were other snails pulling other anvils up other hills, and we hurried by them without noticing or a second glance.
We sometimes get sensitized for the better for the experience.
If nothing else, Joe Biden says he can get you a job at a 7-11!
Hang in there. Prayers for you, Kathy and the sprout.
Oh Lord! The "Soylent Green" reference really hit home.
What must be by any standard the DARKEST dysptopic version of the future is the film of the same name, and to this day the bitter, dark, heartbreaking beauty of the late sequence you referenced has kept it really too much for me to watch.
Pray God that you're not at that point now or ever.
All of us will continue our prayers begging for Divine Intervention for Kathy, but no less for your own courage continued strength.
I daily hang on this site for more news, and I confess this post is not very encouraging, but now is when prayer really must be in earnest--it's getting to be crunch time.
Always at your back,
TVAG
"The difference between a Duck Call and a Nurse Call is that sometimes ducks come." Now that was funny. Soylent Green is not the movie to be thing about but understand. Prayers continue for you, Kathy and Daughter J.
A saying I learned 40+ years ago, and still modify it for the circumstance is… When news is good, it’s very good. When news is bad, it better than nothing. (For the original saying, substitute the word ‘sex’ for ‘news’.). Anyways, Kathy, daughter J and you are still in ours prayers for a complete recovery and happiness in your new normal.
“God Bless” as Mr. Red Skelton would say.
The only thing worse than a doctor being partly clear is when they're 100% clear.
Do not be afraid of Hospice/pallative care. They will help you stay in your house as long as you can, and help with comfort and all supplies. If it takes a while, Kathy can even visit the ward for a day or two if you need a break, as well. Milady and I almost waited too long; we signed up on Thursday, and we went to the floor Saturday because Milady was having trouble eating.
I've been where you're at, and the biggest thing to remember is how many people are praying for both of you, and that you are not alone in this.
Also, keep doing whatever it takes to stay sane yourself. Each step along the way, you have to be sane for the next one. I have a friend who came very close to the madhouse himself when his wife was sick, so it's not hard to do. There will always be regrets, but you MUST live through it.
1 of course the prayers go forth non stop;
2 When I was recovering after heart surgery, years ago, the hospital had one TV channel that was 24 hour nature scenes and soft music, and that did me SO much good; i hope it helps sooth your precious bride an you as well.
3 A corollary to the nurse joke - What is the difference between God and a neurosurgeon?
God doesn't think He is a neurosurgeon. ( feel free to substitute any other narcissistic doctor who needs a dash if contempt to offset his unbearable hubris )
Love you all -
j
Really appreciate the ongoing commentary - I understand the two-way benefits here
Been dealing with glioblastoma for the last two years and can't affirm the comment above from Kentucky Packrat enough...
Hospice folks are amazing...make sure you see what's available in your county
That seems to be the arrangement - county or regional - My mom had access to hospice services for a couple of years in the midwest - and my girl here has been able to use similar services and guidance - they are fantastic folks
They are NOT the last week or two of assistance but are available for a wide range of help that I never knew was available
Speaking of Indian accents, Spike Milligan and Peter Sellers did hilarious impressions based on their childhood experiences in India...
For example: https://www.youtube.com/watch?v=r3Zz9qlNuiM
Prayers. Constant, imploring and heartfelt prayers for all of you. God bless.
Prayers sent your way.
Keeping up the prayers.
My Gosh. No words can convey frustration as patiently as you do. I can only imagine what thoughts are left unwritten. Your family has certainly been put through the wringer.
I hope your daughter is feeling better as well.
Prayers for both of you to come out of this nightmare soon.
.....Wayne in Indiana....
Stilton...you are doing exactly what you are called to do. Being with Kathy is your calling. It’s such a dark drama that you are both enduring! It’s almost impossible to comprehend. But reaching out to God and the Holy Spirit for peace, calm, strength and healing can help you during this journey. Please know that we’re praying for you and your family! God bless! Stay strong!
Prayers are with you and your loved ones.
Stay strong, Stilt.
Praying. As Paul wrote: "Pray ceaselessly".
@Mike - If nothing else, Joe Biden says he can get you a job at a 7-11! . I snerted.
My Italian-American bone marrow offer still stands, Stilt. If nothing else, Mrs J should be able to up her spaghetti sauce game.
Prayers continue for you and Kathy. Wish there was a way we could all share some of those burdens for you. Stay strong and God bless.
Stilt, you all are in a difficult place now and having been an active part of a Cancer (capital C) support group at our church for years and helped folk through recovery and palliative care I know this stuff is never, ever easy. As you move on down the path no matter which direction this takes you won't have to second guess yourself because you will know you have done everything possible. Love is an essential with hope it will turn for good and greater Love if it does not which makes little sense but that's the way I have seen it work.
I have had Cancer three times with good outcomes and know that each six month check up might turn the other way which also happens and that's all right. Your sharing with us your journey is important and the awareness of your journey, with some humor, is important. One outcome of my situation is that my son who lives in Colorado and turns 50 this year became interested in Cancer support and he has been on the board of directors for a Cancer group that raises money and supports people in their area as they go through this stuff, son has an internet marketing company and he has spent a lot of time, without charge, helping his group stage bigger events and draw more people and money in. The more people know and understand they more they can help, the awareness thing.
Last thing is I loved to visit with the nurses and aides and hear their stories, especially those from India and Africa, I usually started out my conversation asking what part of Texas they were from and then I would listen to some great stores about their journeys and families. I totally cracked up one nurse on evening when I had a catheter hanging out my little gown that I would have to keep in for ten days and I said that this was great, I can go home tomorrow, drink a whole six pack of beer watching the football game this weekend and never have to get up to go to the bathroom. Dumb joke but it got a laugh. Blessings for Kathy and you Stilt and your daughter as you move on through the next few weeks with lots of Love and hopefully some laughter.
Oh dear! I wish they would stop already with the chemo! For pity sake! May God take mercy on you, Kathy, and daughter J. And the ducks really do answer rather quickly. Sorry about the others.
You are doing a great job staying sane. Very impressive.
Nobody knows what's going to happen. You are right to keep hoping. A friend of mine had cancer so bad the treatment very nearly killed her; her hair never grew back; but she got better and she even went back to work, for years (as a surgeon!!). It happens.
Another friend told me a great story about his sister: the doctor thought she wasn't going to make it, and said to her in front of her kids that she should be putting her affairs in order. She said to the kids, Here's what I want you to put in order: we're going to Disneyland after this is over -- you buy those tickets now. They did, and she is okay now.
Nobody knows. Keep hoping, keep praying, and keep laughing.
We are pulling for you and for Kathy!
With love and admiration,
Sarah
I would be more than willing to be tested to see if I match Kathy for a bone marrow donation. I am type o+ and I have been a blood donor. May God put His loving hand on you and Kathy and your daughter to help you all get through what ever lies ahead. Be kind to yourself. You are teaching each of us how to truly love our spouses. I sincerely pray for peace, love and understand for all of this.
Stilton, you and Kathy obviously have the patience of Job. May God bless you both and daughter Jarlsberg as well. I am praying up a storm for you as well as two other couples, family and close friends, who are going through similar trials and tribulations. That you can find any humor whatsoever in these times is a great testament to your inner strength and character. Keep the faith my friend.
Renewed prayers for Kathy to be able to come home. Hospitals are no place for sick people.
“Cure sometimes, treat often, comfort always.” — Hippocrates
I believe you've got the last part of that saying down pat.
Stay strong, brother.
@Readers- I apologize for the discouraging nature of today’s post, but being honest allows me a little catharsis and also gives additional prayer detail for those who choose to assist in that way. Most important point is that there’s still hope. Let me try to respond to a few comments...
@Kentucky Packrat- I’m (somewhat) less terrified of so-called palliative care at this point, but “hospice” is another matter. Hospice CAN last a long time - years, even - but not for AML patients. Hospice provides all sorts of comfort services but does not do blood products. Survival is measured in days. As far as staying sane myself, I’m trying but it’s not easy. Thanks to Covid, my family is unable to take advantage of the physical support we could normally rely on from others. There are a lot of things to do which, currently, only I can do and that on a 24/7 basis. So truthfully, I haven’t figured out how to institute good “self care” advice.
@OldTexan- I’m delighted we still have you with us. Three bouts of Cancer is easily three too many. Many of the nurses and aides here are very friendly and easy to talk to. Due to my hearing loss and masks, I’m afraid the staffers from foreign lands (including the other side of the Rio Grande) can sometimes be very difficult to understand. Which is frustrating, but “frustrating” sort of defines my days anyway.
Dang. Praying for you guys!
I am so relieved that others with mild hearing loss have had so much trouble conversing with masked people and especially those with accents. You don't realize how much lip reading you actually do until you can't. I had an MRI this week to try and figure out what's going on in my gut and they made me wear a mask in the machine. The test required taking a deep breath and holding it for a long time. This happened multiple times during the test. When I could breathe, it was my own hot air trapped in the infernal mask. Did I mention I have COPD? This was an exercise in how not to suffocate. I can assure you reading about the travails you and Kathy are experiencing make my own seem so insignificant. I am holding you, Kathy and Daughter J in my heart and praying for the best outcome.
Just so you know: I love the line about the duck call. I'm stealing it. I will pray for forgiveness when I pray for your family.
May God take a special liking to you and your family and start sending some miracles.
Many prayers for You! In His Great Love, Bob
Still on my prayer list.
Pretty stressful week, eh, Stilt?
RE: The Starbucks cup. I didn't know Starbucks coffee was amber and smelled of peat fires.
Sure is true about the duck calls.
Stay strong, my friend. there are hundreds, if not thousands of people praying for you and Kathy. I am one of them.
We are still praying for solutions and healing. I cannot fathom the distress that you, as her caregiver, are going through. Our prayers are for you also and the strength required to uplift Kathy in this process.
My late wife had the ability to pick up accents...she could do West Virginia and Texas quite well, but her specialty was Irish. She had more than one actual Irish person ask her what part of Ireland she was from....
I lost her six years ago to an incurable cancer, bit by bit over six months, so I do have some idea of what you're going through. All I can say is, hang in there.
My heart breaks for you guys. I keep you guys in my prayers every day. This may be cold comfort, but in some way, this shall pass and we all must face this or something like it eventually. You and your wife are showing tremendous strength and love.
May God continue to give you strength and His peace.
Rarely if ever comment here, there usually being so many commenters already I feel lost in a crowd, but just had to let you know that your trials are followed at our house, and you have our prayers.
Not even sure this is "advice"; it's more like my Lesson-learned. But when looking back 7 to 3 years ago when the process of my very aged parents' declines first started I was keen on their care, noticing a lot of stuff, getting upset, reporting etc. And indeed some of that (hopefully not too much) may be necessary; but be as nice & understanding as possible. Still: Things took their courses with each of them & they eventually succumbed.
Now with that having ended 3-4 years ago... and I think it'sa HEALTHY thing: The good times going far back are most remembered; and all that seeming urgent but kind of outlier stuff are nearly forgotten. The point being: Don't give up reasonable hope; but try to maximize the good times; Have the good conversations while the opportunity for that is still possible. Let the bad stuff go; forgotten. Quietly prepare for best proper Rememberance, Memorial & Legacy.
Know what's even worse than how time drags when you're not having fun? How much time drags when you're not having fun but you're supposed to be. Like, you're on vacation, supposed to be having fun, but aren't (for whatever reason).
Dear Stilton and Kathy, I have not posted before but I have been reading ever since Kathy got the news she was sick. I have been down the AML road with my dear Mother. It was 18 months of hell on Earth. She did the chemo, experimental drugs, everything possible to save her including blood transfusions every other day. I remember trying my best to make her well, but nothing stopped the AML. I have prayed everyday that Kathy and you had a better experience. Today's post was eerily familiar, I have walked in your shoes. This journey is not a path I would want anyone to travel. I will keep praying for a miracle for both of you.
I'm just checking in before bedding down on the sofa here in the hospital room. A good night's sleep is not expected. But here are a few responses...
@Lee the Voice- You are a very perceptive man.
@Pete Madsen- I am so very, very sorry for your loss. Your wife sounds like she was a delight. I wish I was there to give you a manly hug (and get one back).
@mindful webworker- Thank you so much. People don't have to leave comments to be fullblown family members around here. You just know it if you are. And somehow I know it too.
@Rod- I don't complain about little stuff here at the hospital, and you'd be amazed at what I treat as "little stuff" these days. And my complaint wasn't about raising hell but rather about bringing attention to something that deserves a policy review.
Your advice about celebrating the good right now is fine, but I'll admit it's hard to implement. We're not currently reliving good times so much as just living miserable times. I wish it were otherwise. I'm hoping we'll get a chance to revisit good times together in the future.
@Anonymous- the phenomenon you refer to is absolutely real!
@animal lover- I am so sorry for what you and your mother endured. And 18 months...! Our ordeal started Sept 17, 2021 but it feels like an eternity. I'm at a loss for words other than to say I care, and I'm deeply thankful for the care and support you're sharing now. One of the most damnable parts of all this is that I've never needed in-person support more, but thanks to Covid it's impossible. Which is all the more reason that I'm grateful for you and everyone else here.
I've been there, in those hospital rooms with the gravely ill. While you cannot know what will happen over the course of her disease, you need to realize that this is also very hard on you.
You are not getting sleeping pills or pain relief. You are not sleeping well, eating well, or getting the comfort of your loved ones. You have not been able to help your daughter heal, nor to spend the time with her.
Take an occasional break. Ask if there are nearby exercise facilities (with showers and maybe a whirlpool), that you could use. Indulge yourself in a good meal from GrubHub (or ask a friend to pick up and deliver it). Don't be afraid to ask for specific things - often, people would be happy to help, but don't know what to do.
Your presence is helping your wife. Unfortunately, it is also wearing you out. I will pray for you both.
"Hospitals are no place for sick people."
Unfortunately, the necessary treatment to stay alive is only found there.
A few weeks ago I couldn't stand being there, so in spite of being multiply injured I insisted on going home...not quite as bad as Mrs J's plight, but I have a few visits a week from a therapist and a housekeeper 5 days a week for 3 hours. I should survive even as I find as much funny in my plight as possible.
With a concussion, a broken ankle and a badly sprained one on the other side, I sit on the couch and painfully drag myself into the men's room a few times a day. Did I mention my 71 yo unvaxxed self had Omicron a few weeks back, and my COPD got much worse? Yet...I have all my years of fun adventures to try and remember...no family but hey, could be worse, they could be here annoying me! It's funny 'cause it's true.
Stilt...please heed all the advice on surviving Kathy's bad time, EVERYONE
needs you around...
STILL NOT A ROBOT! :)
@Linda Fox- I appreciate the advice and am sorry for the time(s) you've been in these uncomfortable shoes. Some of your suggestions would be hard to implement (other facilities) owing to Covid restrictions and the fact that Kathy literally has no immune system working right now. Even without Covid, I'd still have to observe the same precautions to keep Kathy safe.
The biggest, hardest thing is not being able to be with my daughter and comfort her. She hasn't seen her mother this year and has seen me for maybe 48 hours in the past month and a half.
As far as asking people for things, I'm not too proud - I just can't think of anything I could ask for that people could give. Other than emotional support, which you're helping give.
@Gee M- Holy Cow! That's an awful lot of stuff to hit at the same time. Remember when medical emergencies used to wait their turn to show up one at a time? I'm guessing those days are gone for we getting-oldsters. Get feeling better!
Stilt...thanks for sparing the time to think about all my complaints, seeing as how your worry plate is so full right now. I have to laugh at how Fate gives some of us what we deserve for all the past misdeeds we have done... Maybe in a past life, I was a very naughty boy...ala Monty python.
still NOT a robot!
TrickyRicky's comment about you having the patience of Job reminded me: I wanted to say that when someone yelled at you to "get a real job!" -- they didn't mean THAT Job!
Feeble attempt at humor....
Prayers still continuing for the 3 of you!
hey...feeble is still funny...!
A new week, and renewed prayers for the Jarlsberg clan. I wish there was more I could offer.
Fun flies when your doing time.
This works for almost everything.
Heltau
@Readers- It's Tuesday afternoon here in the hospital. The doctor breezed through earlier to say that he will probably have the results of Kathy's bone marrow test "when I come by tomorrow." Wow, don't make a special trip or anything.
The best case scenario is that we'll find out that Kathy can keep fighting a battle she doesn't want to fight anymore. Although I don't want to paint that too bleakly - she could regain the will to carry on if given a chance to genuinely rest from the 24/7 assault she's been under.
As a special gift from the doctor, he's approved another chemo shot into her noggin port today.
Let's hope for a best case scenario. On the other hand, "On the Noggin Port", might make a great reboot of the Marlon Brando, Karl Malden classic! Hang in there, Stilt!
Stilton...I can sense your weariness and other emotions...whatever comes tomorrow is what comes. Kathy wants to stay in this wacky and heartless world, so worry less and wait 'n' see what tomorrow brings...if this were a musical we'd all break out in song.
Kathy will let you know which way she wants to go... in the meantime, your online family will hang around and offer up our heartfelt prayers.
@Mike aka Proof, Gee M, and Everyone- We got a preliminary report on the bone marrow test this evening, and "best case scenario" is officially off the table. So tomorrow (Weds) we'll probably be learning about the "best worst-case scenarios."
I'll update when I can. Until then, I think we need to shift our prayers into straight up "begging for a miracle" mode.
Praying right now for that miracle. Love, Glen and Sioux.
Cranking the positive waves up to 20...
"Here's to begging, with open hearts and minds, for the miracle." What a hard rocky road journey Kathy, you and daughter have been going through and now we pray for a miracle and my our Lord's blessings be with you all.
{3M, I seem to recall you posting a misheberach early on. Maybe you could repost it now.}
Cranking up the dial on the prayometer, Stilt.
Also on the virtual-hug-ometer.
Hugs and continued prayers…..
Maoz: https://www.myjewishlearning.com/article/mi-sheberakh-may-the-one-who-blessed/
Amen.
We stand with you, and our prayers continue for your entire family. God is awesome; He will not abandon you.
I am praying that you both find peace with the hard decisions that are now unavoidably in front of you. I wish there was some other way to help you both, but it's Kathy and your journey.
(tears in my eyes as I write this)
May God bless you and your decisions.
Praying for that miracle.
Bad news, alright.
Prayers continue, reinforced by the thoughtfully posted link to the Mi Shebarach. My Wife and I prayed it together for a dear friend who is in a bad way today, and printed it out for future use.
Stilton, it's "Get St. Jude on the line," time now, for certain.
We trust you both to make the best decisions, but we pray for wisdom and guidance for you, too.
It would be too flippant to quote Buzz Lightyear, but he has a point.
TVAG
Re Kathy's intraoral sores/ulcers. A product is available that can be applied intraorally and which sticks to the intraoral mucosa like glue. The product can be infused with acyclovir or a number of other associated products designed to fight intraoral herpes, or for a palliative approach, benzocaine or lidocaine. I left dental practice 17 years ago and my aging mind doesn't remember the name of the ointments available.
I don't know if such treatment would be appropriate here, but you might want to at least bring it up with the medical/dental staff. There might be some value to a palliative approach, especially if it gives Kathy enough relief to communicate.
I haven't commented on your posts before, but I have closely followed the saga of your wife's battle with leukemia. It seems, at this juncture, her battle, while well fought by you both, is lost
If I may, as someone who has lost someone very dear to me before, may I say, you are so very fortunate to have found your dear Kathy, in all of the clutter of life. You have loved, and lived, and now sadly you must say good bye. I wish I could be more articulate. Cry as much as you need to, and then cry more. God bless you both.
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