I really don’t want to write this update, but I owe it to all of you. Kathy’s bone marrow biopsy results came back and this fourth brutal round of chemo essentially did nothing. Well, nothing to the leukemia - it pretty much destroyed all of Kathy’s good blood products.
I could make a long narrative of this, but won’t. There is no longer a medical possibility of a cure for Kathy. All she could do is sign up for an unending cycle of chemo after chemo with no discernible point - so that’s not what we’re doing. Kathy will be moving to hospice where AML patients tend not to last very long.
Over the course of the day we’ve gotten the crushingly bad news from the doctor, met with a hospital caseworker, then met with a hospice representative, and more or less finalized a location where Kathy will be going soon. Maybe even Thursday, except the roads in Dallas will be covered with dangerous ice, and we’re not feeling wildly lucky when it comes to taking risks at the moment.
The hospice facility is said to be excellent, and we’re getting a so-called “semi-private room” which will actually be fully private, with me occupying the second bed. It will be close to home, so Daughter J and her Mom can finally be together for awhile.
And because Life just can’t get enough of kicking us in the balls, Kathy’s mouth is still full of sores that keep her from being able to talk more than a few words at a time. We have everything to talk about, very little time to do it...and mouth ulcers.
Kathy has made her peace with leaving. I am in no way at peace with losing her.
Prayers for our family will be greatly appreciated, as always. And thank you for being here for us.
-Stilton
271 comments:
«Oldest ‹Older 201 – 271 of 271Sad news indeed.
We are still praying for a miracle. We are still loving the three of you. You are family.
Love, Glen and Sue.
I have no words that would help. Just know that all of us are here to be the towel you need, when you need us. You're family, and we'll always be here for you.
As a long-time reader who never comments, I am sad that my first is to extend my sincerest condolences to you and your family, Stilton. I sincerely hope you can find comfort in the memories of all the great times you and Kathy shared, and I will continue my prayers for you and Kathy. Sincerely, Jonesy in Ohio
Stilton and Kathy, we have you in our prayers and thoughts.
Stilton, so very sorry to hear this heart-breaking news. I will continue to lift your dear wife in prayer as she makes the journey home. This time of suffering can also be transformative and grace-filled for your family. I pray that is so.
I'm so sorry for this terrible news. Know that you are all in my prayers as you navigate this reality. My prayer is that Kathy has accepted God's free gift of salvation, Jesus, and will soon be in His very presence.
So sad. Prayers for you all.
There is a saying in the Talmud: "The wicked prosper, while the righteous suffer." I was treated for AML at Walter Reed in 2008. That gives me some perspective. Why a wretch like me survives while an angel like Kathy perishes is beyond my wisdom.
In addition to prayers, if there is something you would request of us, now is the time.
With warm respect and deep sadness,
Elam Blacktree
I am so sorry to hear this. We went through something similar with my Father last fall, pancreatic adrenocarcinoma, end stage.
The worst part was when he was transitioning, my brother thought he should get up out of bed to look out the window. Dad just wanted to be left alone to rest.
All these years of enjoying your work online, I feel closer than many friends IRL.
You are all in my prayers.
--mech
Stilton, you are the epitome of strength and grace under pressure. I pray for you and your family.
I am so very sorry to hear this. Stilton's Place and Johnny Optimism have been a part of my morning routine for a long time. Every Monday, Wednesday, and Friday, they have been like having coffee with a dear old friend. My heart goes out to you, Kathy, and your family. Life does not seem fair at times. I hope you can find some peace during all of this.
Terribly saddened to read the latest update. All these years of getting to know you only by the wit from your posts, yet my heart breaks with yours. All I can offer is an arm around the shoulder and prayers for you, Mrs J and your daughter. God Bless.
Mr. Cheese,
I am so sad to hear this. My prayers are with you and your wife and daughter. What a terrible blow. My wife is 10 years met breast cancer and each time we go to the oncologist, we dread hearing what you just heard. It is a matter of time. Cherish the time you have left, ease her passing as much as possible and be brave, for her.
The Inukshuk
I lost my mom to stage 4 endometrial carcinoma November 2020. It's not much comfort but the hospice workers were amazing. I could never do what they do. I will continue praying for your family. You're going through about the worst experience in human existence.
Stilt, my heart is breaking for you. What a terrible thing to face. I know, though, that with God's grace and mercy, you will come through this.
I want you to l know that I am still praying for Kathy, and for you.
Should you need, PM me, and I will send you my phone number.
Lee
I knew this was coming after reading the Waits and Measures post. I went down the AML road with my Mother for 18 months. I mentioned that when I put up my first post. The AML path is a heartbreaker to say the very least. Get all your family members there to see Kathy ASAP so they don't miss her. Your correct, when Kathy goes to be with God, even though you know with all your heart it is coming, your never ready for it. I am so sad for you and your family. I wish the miracle I had prayed for Kathy would have happened. Sadly some times the answer is no. I wish I had more comforting words for your family.
I am so sorry. I am praying for comfort for Kathy and strength for you.
I wish I could offer words which would actually be of comfort, but there really are none. I hope the sheer number of thoughts and prayers on your behalf will be of some help.
Prayers sent up, Stilton, we are with you.
I lost my wife of 37 years just over a decade ago. It still hurts and when Kathy moves on it will continue to hurt for you as well but you will both get through this. Kathy moving to the next stage of our existence and you learning how to survive and maybe even thrive a little bit after the due passage of time. I still mentally ask my wife what she thinks about things and get impressions of answers. I hope you will to, they bring a great deal of comfort.
Hospice is a wonderful, wonderful program. If you get a chance read "Final Gifts" by Maggie Callanan and Patricia Kelley it is a series of stories of patients in the hospice program and brought me understanding.
God bless you and Kathy
MsPony made excellent comment above. And this thread is well above 200 in a short time.
Proud of all of you; What a fine E-family this is. I hope the connection & love is realized and it HELPS you & all of us. I've not much more to say now; still waiting to hear more about the similar situation here. But good thoughts to all.
Plus it's just dang cold here; tired of winter. And there's a new war on. The first hot war started in Europe since 1939. I won't say more about that. Let's not get wrapped up in all that noise right now.
Praying for you and yours through this terrible time.
After reading your update last night, I fell asleep praying for Kathy and you and Daughter J. I dreamed that Kathy started improving once you arrived at the hospice facility, and I woke singing a song about miracles and salvation!
(If you're interested in trying an alternative treatment path, I came across some fascinating information about healing frequencies and sound/light therapies - at icnr.com and hope4cancer.com respectively.)
I am still praying and believing for healing. Nothing is impossible for God! He is your Creator and Redeemer and knows each of you by name. He loves you so deeply and personally. May you feel His presence surrounding you in every moment.
Holding on to hope!
May the long time sun shine upon you, all love surround you, and the pure light within you guide your way on
No words, only prayers. May God bless your family always.
Bless you.
My deepest condolences to you, Kathy and the rest of your family. Leukemia, almost by accident, has become a serious cause for me. Several years ago a friend here in Mountain Home, Idaho had her husband diagnosed with leukemia, which eventually won the battle, but asked if I'd participate in a golf tournament to benefit the cause. I did. A led to B which eventually led to me volunteering to take pictures of her tournament every year. Golf for a Cause, Mountain Home, Idaho. I do hope for a miracle for Kathy, and you, but know that I am thinking of your family daily.
My heart goes out to Kathy, your daughter, and you.
I had hoped for a better outcome and am so sad to hear the news. We used hospice services when my mother passed. Something to consider is that the hospice was able to set up a hospital bed in her house for her final days. They were kind and very helpful, and after spending too many days battling a UTI, she was able to go home, and we were able to spend time with her. God bless you and Kathy and your families.
Stilt, I've been reading your column for years, and I don't believe I've ever commented, because I didn't feel I had anything to add. But as someone who has been battling cancer since 2003 with the fierce assistance of my wife, I just want to say that your support has meant more to Kathy than you can ever truly appreciate. God bless you both.
I am so sorry. And I will continue to pray for you, and your wife and daughter.
No words but a hug.
God's love to you and your family. Kathy you and your daughter will be in my prayers.
So sorry Mr. Jarlsberg. My heartfelt prayers and healing spells for your whole family. I know this is a very difficult time for you and daughter Jarlsberg. You have given all of us many years of laughter and entertainment and for this to happen to your family is just heartbreaking. Draw strength from the love we all have for you and yours.
So sorry to hear.
Prayers for you both, and your daughter.
I am very sorry. My prayers for you and your family.
I know what you are going through. My wife is dying of ALS (Lew Guerings Disease) and we have little time left together. My prayers are with you and your family.
As many have said, there are no words. We are praying for you, for Kathy, and for your family.
Stilton, prayers to you and Kathy.
Prayers for your family!!
I heard about your blog from Big Country and this is the first time I have read it. So, so, so sorry to hear about your wife's illness and prognosis. Praying for you both.
I can only add to the comments, thoughts and prayers of the others who have posted. I have read your blog continually since I first discovered it years ago, so feel like I know you personally. Stay strong. (Deplorable Mike in FL)
Know that you have a huge support group here. If you need anything let us know. Prayers and virtual hugs for you all. Maybe reminisce with her about all the good times you've had. Obviously tell her you love her a million times and maybe read her a book? Some classic she never got to read. I lost mine suddenly so never had the chance to do those things. Tough to even say but try to make the most of whatever time you have, stay as positive as possible and never give up hope. Miracles do happen occasionally. Maybe some anti viral for the mouth sores...
I'll add my prayers too, for you all.
Stilton, I share your pain as I lost my brother this summer to leukemia after he defeated MDS via stem cell transplant. Know that, as her quality of life deteriorates, it will be a blessing for her to finally be able to rest. That in no way makes it easier for you to handle. We, my wife and I, are sending prayers, and good vibes to you, and your family. She sounds like she's facing everything with dignity.
Of course my grief is not the same as your grief.
But I grieve for you all, none the less.
This is awful, I won't stop praying.
It's quiet here now, and I'm thinking about you. I understand a little bit about you...like Tom Selleck's character in the Jesse Stone movies (9), you drink just enough and no more...and while I'm sure you appreciate all the caring voices praying for you and your family, like myself you are more less religious than spiritual. I think it's not a question of you getting right with G-d but rather G-d getting right with you. Never a settled question in times of great sorrow.
Tomorrow is just around the corner, wishing it brings you, Daughter J, and Mrs.J some much-needed peace; my thoughts are with you all...
Greg
Thoughts and prayers to you and your family..
Prayers for you, her and the rest of the family. May peace be with you ... Ken
Praying for both of you.
@Readers- Let me just get straight to it: we love you folks. I have read every comment here to Kathy and they mean so much to us. Tears were shed, but the good kind. Snot also dripped and I'm not even sure it comes in a good kind but you get the idea.
We're here in hospice now and everrything is just off the charts weird and distressing. Under other circumstances I'd be writing a black comedy monologue about all of this, but these aren't other circumstances. We don't feel like we're getting any real support from the hospice agency or the actual facility, although we're being told that it's because everyone goes to a skeleton crew (irony unintended) on the weekends. Who knew that end-of-life support was such a M-F 9-to-5 deal?
Tomorrow (Sunday) Daughter J can finally come for a visit and see her mother for the first time in two months. Sadly, although Kathy is perfectly lucid, her mouth sores prevent her from speaking more than a word or two - and just when everything needs saying and time is running out to say it. Still, Kathy and I were still able to communicate a lot of important and loving sentiments together today and I trust the same will be true between mother and daughter tomorrow.
Please continue to pray for us all. And many thanks to so many of you who have offered more personal help. I can't really take anyone up on the offer right now, but it still means a lot to us. And I may track a few of you down for additional support or conversation when current events have resolved.
If I make updates, they'll be here in the comments. For now, I just wanted to thank you all again for helping us carry this weight.
Stilton: So glad daughter J can finally come visit her mama. One small ray of gladness in the gloom. Our prayers are still with you and your family.
Beyond awful. My sincerest and deepest condolences to all.
OK, here's a bit of levity about tears & snot (and both are good things). One of many jokes among SCUBA friends is: What's the main thing you need be a diver? It's not so much about being a great swimmer (but one does have to comfortable in water); and it's not about macho (in fact that can be a problem). ANSWER: You have to look good with snot on your face.
Another is: Do NOT get them mixed up: Spit in your MASK. Pee in your wetsuit.
We're with you all.
@Rod- the joke about snot on the face reminds me of the penguin who brought his car in for repair on a hot day, and the mechanic told him he should just kill time for about an hour while he diagnosed the problem. The penguin wandered around and eventually stopped at an ice cream parlor for a triple-dip cone. As he strolled back to the auto repair shop, the penguin's ice cream was melting faster than he could lick it, eventually making a huge mess on his face.
When he reached the auto repair place, the mechanic said "It looks like you blew a seal" and the penguin said, "no, it's ice cream."
LOL! You now stand 1-0 in this little snot-topic; & I think your lead could grow.
I pray for her and you both. May God be with you.
@Readers- Consensus opinion is that this is Sunday so I'll just go with that. It's pretty much another shitty day here in hospice. The degree to which this place is understaffed, uncommunicative and unhelpful cannot be overstated. Frankly, we're pretty freaking sick of the idea that more and better staff are here from Monday to Friday and on the weekends the terminally ill are on their own.
A short while ago Kathy needed to use the bedside toilet so we hit the button to call for help. You'll note that I don't call it a "nurse" call because there's only one nurse in this whole building for a 12 hour shift, and another one at night. Everyone else is just labor and not an honest to Jesus English speaker to be found.
Between the two of us we managed to get Kathy onto the commode without killing her and finally (10 minutes later?) a slip of a girl with no grasp of English entered. We explained that getting Kathy from bed to toilet was a two person job (with me being one of them), that Kathy would need to be "cleaned up," and that a new pad was needed to replace the soiled one on the bed. She blinked uncomprehendingly and then left, never to return.
We eventually got things sorted out, but it's not like our nerves aren't already rubbed raw. Yesterday's fun was discovering that whoever emptied the foley urine bag didn't seal it properly, creating a yellow pool under the bed. A worker mopped up all she could with bathroom towels and then announced that, it being 4 in the afternoon, housekeeping had gone home - "but remind them and they'll clean it tomorrow." A far cry from the hospital with its obsession on trying to create a germ free environment for the immuno-compromised.
We've been told that the many support services and medical expertise we've been promised (and billed for) will finally show up in some form on Monday. Anyone want to bet whether that will make this experience better or worse?
Daughter J got to visit today and it was important but so hard and so emotional. She could barely get out what's in her heart, and Kathy can't really say anything back. The whole visit lasted about an hour, but she'll try again tomorrow. We're not measuring the value of the time spent together by either length or number of words. Just being together is what means everything now.
"Wow Stilton, that's awful," you might be saying to yourself "At least you don't also have a sudden flare-up of painful, white hot hemorrhoids." But that's where you'd be wrong.
"For fuck's sake" seems hopelessly inadequate. Find another hospice.
Stilt & Kathy,
The only light at the end of this dark tunnel is the large amount of fodder you will have for your wonderful blog. Plus, at that time Kathy will be with the angels rejoicing. I hope you will name names, people, and times. Our prayers are still with you, Kathy, and Daughter J. May God Bless. Amen.
@M. Mitchell Marmel- We've been assured by those in a position to know that as awful as this place is, it's head and shoulders above other places. Daughter J once worked in one of those other places, so I know this is the Ritz-Carlton compared to some of those abattoirs. We promised to stay through Monday to see if it gets better.
@Fred Ciampi- I'm looking forward to not putting all of you through any more than I have to. We'll move on to lighter subjects. Which doesn't mean I won't try to be nettlesome elsewhere about all of this.
Almost surely not as intense as yours with Kathy; but not so long ago I went through 4+ years (but VERY FORTUNATELY) with crisis mode being in-play with only one very elderly and ill parent at a time. It seemed a call of duty to be observant and keep notes; and THEN by God I was going to get the Sumbitches when all that was all over. Maybe write a book too.
But somehow by the time it was all done and wrapped up at Care centers, Homes, Funeral Home Church, Family, Friends, Immediate estate matters & the surely going to Hell money-grubbing banks and insurance companies etc.... I would really just choose to forget most of it and move on. Forgot the bad stuff asap and put the effort into recall & legacy with the good stuff. Plus we are dealing with huge big business & government machine which took a long time to perfect the bullshit we have now.
Another TWO also important considerations: Do no harm. (a) Any such attack would surely pull-in good caretakers who were kind-hearted and doing their best but are also having to deal with the cookbook. They ALL seemed afraid to make any step out of line by accident and clearly not on purpose. And outside the machine about 1 on 1000 might want to hear all about it. And NONE of them are in positions or politicians who might be able to do something about laws & big business. AND (b) I DIDN'T WANT MY PARENTS TO SEE ME IN ATTACK MODE.
However: I did have to calmly have very direct conversation with Regional Director of the Hospice organization and explain things to them. IE: I hired them and I know the problems and I know how much they charge even if they won't disclose it because Medicare billing statement WILL tell me... so they'd best start listening to me or I WILL (1) Fire them all, (2) Immediately replace with a well-briefed competitor, and (3) Will also report & explain to everyone who will listen or read; including industry officials. Things got better after that. But then I dropped it all. Needed to do that in order to move on.
The less you go down the wrong trail; the shorter it is to get back on track... so do your best and try to handle it with grace. I think Kathy will do better as well.
Stilton,
Extremely rough times for Kathy, you and daughter. Not much to say but that I have been ruminating about the 'situation' since the day you posted this.
Do take care.
@Rod- Sage advice. I won't actually be looking to fight with anybody over anything for the foreseeable future and certainly not at this specific time. I don't want any more angst or anger so I certainly won't be seeking it out. I did complain about the Haldol nightmare at the hospital, and that will apparently be reviewed as a formal complaint. But that's not a fight and I've got nothing to win and nothing to prove. I'd just like the hospital to do a policy review to make sure the same horrible thing doesn't happen to anyone else. Although if my absolutely truthful recounting of things that happened puts a couple of people in the hot seat, that's fine with me.
May your Faith grant you strength. Prayers for both of you.
So sorry. Prayed and am praying for you both and for your families.
May God bless and keep you both in his perpetual light....
My prayers are on the way.
Respect, Sir...
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