It's been a wild and exhausting few days here. Strap in, it's a bumpy ride.
Since the weekend, Kathy went into a steep mental decline. I spent days telling doctors, nurses, and everyone else that it was significant and getting worse. But to quote the oncologist "only her marrow matters." Fortunately, I eventually found someone who thought that Kathy's inability to stay awake, her tendency to mumble "Yesh...uh huh" endlessly day and night, her shrieking like a wild animal when touched (not by me, but when people have to change her), and her irises fixed and shrunk to pinholes was kind of interesting in its own right. So last night she finally got MRIs to see if her brain was bleeding again.
Since the weekend, Kathy went into a steep mental decline. I spent days telling doctors, nurses, and everyone else that it was significant and getting worse. But to quote the oncologist "only her marrow matters." Fortunately, I eventually found someone who thought that Kathy's inability to stay awake, her tendency to mumble "Yesh...uh huh" endlessly day and night, her shrieking like a wild animal when touched (not by me, but when people have to change her), and her irises fixed and shrunk to pinholes was kind of interesting in its own right. So last night she finally got MRIs to see if her brain was bleeding again.
A brain bleed, by the way, is simply a specific kind of stroke. Most strokes block the flow of blood and everything downstream gets starved for blood and oxygen. In a brain bleed, there is a rupture which lets the blood escape - and again the downstream areas of the brain suffer for not getting blood and oxygen.
The night went nightmarishly slowly, of course, with Kathy endlessly repeating plaintive nonsense phrases ("I think I can SING-guh" or "I think I'm YOUNG-guh") and heartbreakingly non-nonsense phrases ("I want to go hoooome" and “Ouchhhh”) which went well past midnight.
This morning we got the results of the MRI scans and, amazingly, she doesn't have a brain bleed of any kind and, in fact, her previous bleeds are all healing nicely. Rather, the left side of her brain shows some swelling which Dr. "Only The Marrow Matters" thinks is a reaction to some of her newer meds. So she's coming off those and hopefully my real Kathy will be returning soon.
Because of all this, Kathy's critical bone marrow test has been moved up to tomorrow, with results following in a few days. If there's no leukemia in the marrow, then the fight can go on. If there is still cancer in there, then we're likely out of options. Hopefully that’s not what Kathy will be crawling out of this drug-induced dementia to face.
So please keep those hopes, good wishes, and prayers coming. For Kathy, Daughter J, and me too.
80 comments:
Prayers for her, and you.
Our hearts go out to you Stilt. God bless Kathy, you and your daughter.
Definitely you have my prayers for you and all of your family.
Continuing prayers for you and yours!
Wow. Let's all keep fingers crossed and hopes up.
Stay strong my friend.....
Wow. Let's all keep fingers crossed and hopes up.
That's the thing about being on such a cocktail of drugs; anything is possible.
Prayers for the best outcome.
And it's not just Kathy. I feel like the whole country is in a state of a steep mental decline, and most of us aren't even on such a witch's brew of drugs.
Redoubled prayers for all three of you and especially Kathy. God's will be done.
🙏🙏🙏
Stay strong. My wife has leukemia but is doing fine for now. I only hope I can do as well as you have been doing when the time comes.
We have such hope for you and yours, sir.... bright blessings to you all.
Mike in Canada
Words fail me. My utmost best wishes to the two of you.
Praying.
Sounds like this might be the "crisis," which when passed points the way home. If not... it points the way HOME.
That MRI report is most encouraging, but still only a detail in the Big Picture.
Praying for the marrow test tomorrow to be what everyone needs--and deserves--to hear.
This is the time, everyone, to get in there and make prayer work.
That you have kept your ability to laugh--however bitterly at times--is your earthly salvation. Your tips for caregivers--brilliantly amended--deserves to be hung in every ER, OR, ICU, and Bedroom in the place.
Looking for your next post--as soon as tomorrow?
Truly, Stilt, God Bless.
TVAG
Continued prayers for you and your family.
I can’t imagine what you all are going through. Peace and Blessings to you.
God bless you, Kathy and your daughter.
Like John the Econ said, anything is possible with drug cocktails.
My Mom had MS and when she'd get the flu and some dehydration she would go 'bonkers'.
Talked real stupid!
Hang a bag of potassium and she'd be normal in under 20 minutes.
Potassium was within normal range, but low.
She didn't just have low potassium brain fog, she went bonkers. "fragile brain"
For maybe the 2nd or 3rd time in my life, I'm at a loss for words. Good karma your way...hang in there - all of you!
While not in the habit of posting my religious beliefs, I sent up a prayer to St Jude. Should anyone else wish to pray for Mrs J’s healing:
O Holy St. Jude, Apostle and Martyr, great in virtue and rich in miracles, near kinsman of Jesus Christ, faithful intercessor of all who invoke your special patronage in time of need, to you I have recourse from the depth of my heart and humbly beg to whom God has given such great power to come to my assistance. Help me in my present and urgent petition. In return, I promise to make your name known and cause you to be invoked. St. Jude pray for us all who invoke your aid. Amen.
Like my friend, Rabbi Morris says, “It couldn’t hoit.”
Gah! Hit “post” too soon.
If you would like to,post a prayer to St Jude’s shrine: https://shrineofstjude.org/prayer/prayers-to-st-jude/
Stilton, Just read a piece in the 2/3/22 Seattle Times title Study: Treatment Cured Leukemia Patients, by Laura Ungar of the Associated Press. If you cannot access it please send me an email address and I will forward it.
Ed H.
Oh, man, Stilton, that sounds so hard. You are all in my daily prayers for comfort, strength, and healing. And may God bless the doctors, nurses, and staff with wisdom and skill.
Our thoughts and prayers are with your family.
Stilt, I can't imagine. Prayers to you and the family.
Link Ed referred to is
https://apnews.com/article/science-health-cancer-leukemia-gene-therapy-7bb38e71a15c83c84f201a0fa19b0a3d
Paul
I can't pray long, hard, loudly enough for you!! I pray that I never have to experience what you're going through - I don't know if I could be as strong as you. You are a FINE example of strength!!
Keep the faith Stilton
Bobo the Hobo's prayer. Beautiful. Said it more than I could. Prayers being said and good thoughts for you and Kathy and your daughter. Praying for peace and healing.
Some consolation Stilty, it's Friday here (Australia) so you got that right.
You and Kathy and Daughter J continue to be in my thoughts and prayers.
God Bless.
Like like your version of the Caregiver Advise better than what I was told. The prayers and good thoughts will continue Stilt...For all Three of you!!
Not one to post on blogs, but I am one to pray. I’ve done many laps on my Rosary for you, Kathy and your daughter. God bless you and your family.
Continued prayers.
@Readers- Well, I THOUGHT I accidentally posted too soon, but it turns out that this was when I needed your comfort and support, so I guess the timing was actually perfect.
Interesting (and encouraging) to hear about the delirium-type effects others have had from medication. I can’t tell you how hard it is to be in this room and have Kathy here and gone at the same time (at the moment she’s repeating “Yes, uh-huh” on an endless loop).
Apparently the bone marrow test will take place on Friday morning, after which she’ll get an in-room EEG to see what her brainwaves are doing. So that’s yet something else to worry about as if we needed more.
@Joe Perez- If and when that time comes, I hope that it’s easier and more rapidly successful for your wife.
@Bobo the Hobo- All prayers are more than welcome. As I’ve explained here before, I consider myself spiritual but not religious. That being said, I haven’t missed a day of praying since Sept 17 (when all this hit the fan). Nor did it keep me from seeking out a chaplain here to talk to today and gratefully accepting his prayers. Thank you, Sean, you’re a good listener and a kind soul.
@Ed H- I saw that article and I know that the doctors here are familiar with the procedure. It would be great if Kathy could get that and it would work. How likely that is to happen, I don’t know - but we’re sure overdue for a GOOD surprise.
Information is what you need and tomorrow you will have more information, prayers for the indication that the fight will go on and in the end healing and remission. Stilt, you and Kathy are fighting the good fight and there are so many prayers and blessings coming your way, we have grown to love Kathy, you and your family and tears were in my eyes as I read about today's and last evenings situation. Until tomorrow, may both of you be able to rest and then do the marrow test with the outcome we are all praying for.
Endless prayers, much love, bright hope- - I send these to you and Kathy.
I sincerely hope Friday brings your family much needed positive news. Continued prayers from WI
I sincerely hope Friday brings your family much needed positive news. Continued prayers from WI
Always in our thoughts and prayers
Always in our thoughts and prayers
I wish I knew more to say, I know form experience the kind of hell on earth that you are going through, as well as your lovely bride. Just know that my prayers continue for you all, always
Prayers ascending for a miracle. St. Jude is asked to intercede.
(cranks the positive waves to 12) (kittehs send purrs and snugs)
Hello Stilton,
Thank you for posting the details of your ordeal.
I am 82 years old, and my friends and relatives are going through some things similar to your events.
Reading your thoughts helps me to understand.
Bill Moore
Storming heaven with prayers! Asking my little boy up there to intercede for you. God bless you all.
When I asked G-d to take some a my time left for Kathy ...like in Avatar with Ayah, he heard (me)!Ihope it translates into some goodness for ya'll, after all these years of having Johnny Optimism in my life, (how do you come up with such sick but brilliant 'toons?)it's only fair. We all have faith the news will get better...
Baruch Hashem!
Still not a robot!
Prayers.
As always, prayers are sent your way, via God, of course.
.
NSF
Prayers for G-d's healing angels and love to surround you and your family. You are a far better, braver man than me.
Mark
May the Lord smile on and heal your Kathy. And for your daughter and you, too, peace and comfort !
That being said, I haven’t missed a day of praying since Sept 17 (when all this hit the fan). Nor did it keep me from seeking out a chaplain here to talk to today and gratefully accepting his prayers.
God makes a lot of promises about things, but there is one promise that is not only not made, but "waved off": Why? When Job asks why, God basically asks back "Could you have created the earth?" More importantly for us, when Paul asks why he's stuck with his thorn, God comes back "My grace is sufficient for you."
I cried over God not answering our prayers for healing for my late wife, about being left alone, about sins that I thought were tamped down but came back, about 150 pounds found again after being lost. Then I was reminded of that one small verse: My Grace is sufficient for you. It's not my problem. God knows why, I don't have to. I'm not alone, I have Him and a lot of people. I can lose weight again, and I can pray for forgiveness again. More importantly, I have God's grace.
Healing is a promise, but sometimes it's delivered in the next life. My wife is with Christ and now is healed. I pray your wife will be healed here, and she well can be here. It is in God's power, and may be in His will. Keep asking, and don't hesitate to ask more and more people. Jesus says to ask often. (Get onto KLove.com and billygraham.org and fill out their prayer request forms. Every extra prayer helps.)
More importantly though, have you two been baptized, and have you accepted God's Grace and mercy? If not, talk to the chaplain on duty. If he's a non-evangelistic ninny (like a lot of teaching college chaplains are), he may not be useful. If that's the case, Call the "24/7 Billy Graham Prayer Line" at 888-388-2683, or call KLove at 800-525-LOVE. The BGEA (Billy Graham's old ministry) and KLove both keep trained people on-call 24/7 to talk about this.
Prayers going out in your direction...
I can't even begin to imagine the stress you're dealing with at this time.
HANG IN THERE KATHY!!!
Hang tough Bro, we are pulling for you!
What Kentucky Packrat said.
Trust in God.
Prayers sent.
Hang in there brother... prayers have been sent many times pver for your beloved
If there is good to come from this challange your family is facing, it could well be that publicizing it has brought some crusty old f*rts to the realization that God works in wonderous ways, and you are leading some of us back to Him.
When we pray, God listens closely to the sinful man, because He hopes to bring us home to Him. He hears everyone's prayers. He will deliver Kathy and your family in His time.
May God bless you all, and keep you close. May He deliver you all safely past this. May His love shine on you all.
Stilton.....
Continued prayers for you, Kathy and your family. Words aren’t much comfort during this awful time but please know that we’re praying for peace and healing (both physical and spiritual).
Wayne in Indiana
Been where you are, done that, got that T shirt with my dad. His was a heart condition, but the end game sounds eerily familar to what you outline in your post.
My dad, too, said some variation of "get me out of here" over and over...I would tell him to hang tough. Then it dawned on me: He wasn't asking me to get him out of the hospital, as I assumed. He was asking to go all the way out.
You reach a point where it just needs to end. Dad got there.
Prayers for you.
My prayers continue for you all, Stilton.
Prayers for you and Kathy.. I know it’s not easy.. , Having been in similar situations with doctors and hospitals. But, all that matters is that God watches over y’all and heal Kathy.. Amen
Take Care my friend
Danger Will Robinson
May God give you all healing and blessings of peace. Kathy is in His hands as well as your heart. May Kathy return to her normal mental capacity as soon as possible.
Pulling for you, man.
Life isn't easy. Sometimes it's hell. But the only way is forward. With prayers and determination and Hope. Prayers continue and Hope remains.
Wishing and praying for your family.
God bless you and Kathy. I believe that the Lord is at your side through all of this. Your courage is what keeps Kathy going. I'm praying for a successful result in her bone marrow test. Stay strong for her.
Stay strong, Stilt. Best wishes for Kathy.
Prayers
Hang in there bud. Prayers for both of you.
Still praying for you and yours.
ps. RE: The Serenity Prayer. Better to recite it, than to carve it into the skin.
I've tried to come up with inspirational and encouraging words, but when I read them in black and white they seemed feeble and trite. So I turned to the words of others.
"I ask not for a lighter burden, but for broader shoulders."
– Jewish Proverb
(Your shoulders are already pretty damn broad, as evidenced by what you've endured so far, but you have it in you to broaden them even more.)
"I love those who can smile in trouble, who can gather strength from distress, and grow brave by reflection."
– Thomas Paine
(This fits you to a "T", given your sense of humor and self-depreciating storytelling.)
Stay strong, brother! Continuing positive thoughts and prayers.
I do not like this update but understand "it is what it is." I have been very sick myself for the last week and was put on several medications which have definitely changed things but not all for the better. For instance, severe insomnia, which is something I never have. Diagnostic testing revealed a lesion on my liver which will require additional testing. Nothing to compare to Kathy's ordeal, but it is daunting to get a possibly life-altering condition. My love and prayers continue for you, Kathy and Daughter J. We are here behind you.
Once not so long ago, I followed Professor Doom to his passing.
http://professorconfess.blogspot.com/
"Rants and raves about the mess of higher education in the United States."
His poem, posted posthumously, read as follows:
Saturday, June 6, 2020
A Cancer Poem
Rest in peace my Love.
June 8, 1967-February 15, 2020
By Professor Doomed
(published posthumously)
Allow today’s post as a poem I wrote:
Every day is cancer day, every single day
Every day is cancer day, it never goes away
Cancer in the morning, afternoon and night
Cancer in the darkness, cancer in the light
Cancer treatments, cancer pain
Cancer just comes back again
Cancer life is constant fright
This is not a cancer fight
Cancer hokum, cancer lies
Ev’ry one with cancer dies
“Trust me,” says another doc
But it’s just another crock
Cancer doctor wrong again
Cancer doctor rakes it in
Cancer doctor never right,
Cancer doctor just a blight
“Don’t give up” they do refrain
But the cancer’s back again
Kill my future, kill my past,
Doctors now kill me at last
I cannot imagine how sorrowful his and, now, Kathy's and your trek is, your words along this trail of tears brings me to that Well of Infinite Sadness and Grief. My own account is vicarious, my wife of 30 years (marriage, not age), having survived four major surgeries (including removal of a portion of her lung because of a "spot") in little more than a year, has emerged barely out and clear from Big Med's clutches, though not free of Big Pharma's deep pocket.
Between Professor Doom(ed) and your accounts, Stilton, it'll be a cold day in hell before i submit to such treatments! I'd rather die alone, in pain, waiting for the next sunrise, than go through that dark tunnel leading inexorably to death's door.
That depressingly said, I know that PRAYER WORKS, miracles happen, those events and developments beyond the ken of women and men. The combined faith and word of all those following you and Kathy and your daughter on this harrowing, narrowing path, can and will make the difference! I join them.
"Now faith is the substance of things hoped for, the evidence of things not seen" [Hebrews 11:1], probably the most truthful words attributed to "Paul" ever published. Do you recall clapping for Tinkerbell in the play|movie "Peter Pan". Surely we can do better.
Many prayers to Kathy and I hope that you can try (it's very hard) to keep hope alive in your heart. I know it's very difficult when the light of your life is dependent upon things you have no control over and you have to face not having her in your life any more. There are folks in your life that really care and want to help but, like you, we are reduced to prayer as these events seem to be beyond our control. So we pray, and pray, and worry and fret. Rightfully so.
God please support Stilton and Kathy and J. in their struggle with these ravages of disease and guide them in shaking off this horrible illness.
My hearts taken a beating for 317 days w/out my wife today. I wish I had no idea what your'e going thru but I know. And I know and can read the love between the lines. I got that same disease: I can't bare not being w/ the funniest most unique beautiful person I've ever met. AS they say, I feel you, CheeseMan. -ML
I lost my husband to mixed phenotype leukemia 5 years ago. MD Anderson said they only see that in about 2% of their leukemia patients. Prayets for your wife and your family!
Continuing to pray for y'all.
It surprises me that they didn’t check for a urinary tract infection. As my mom was in and out of hospitals and hospice she had a couple of roommates who were pretty incoherent- talking to themselves, speaking gibberish emphatically while making eye contact, etc. The nurses at hospice finally nailed it for one of the roommates by getting treatment for a urinary tract infection and that particular roommate regained her sanity within a fairly short time.
Prayers for you, Kathy & Daughter. ma
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