First, the good news: Chuck is doing very well with his liver transplant. April 29 will mark the one year anniversary of his transplant at the Mayo Clinic. He's showing no signs of rejection, is off 80% of his medications, and his follow up tests and visits show him to be a super star. He's back to photographing birds every morning with my son, even in minus 5 degree weather, so that pretty much says it all. My avatar pics are of his birds.
Now for the bad news: I've mentioned before having a surface melanoma on my arm removed in October of 2021. An "in situ" mole of no consequence where all the melanoma 'was removed successfully'. This was a result of having a dozen beauty marks on both arms blow up like balloons after the 2nd Covid shot, grow scabs on them, and when the scab fell off, the beauty mark disappeared entirely. Except for the one. And all of it was not successfully removed after all, as a few cells must've escaped into my body and caused metastatic stage 4 cancer in my lymph nodes, liver, and bones. I went to the ER 3 weeks ago for excruciating pain in my left side where a CT scan with contrast was ordered. The cancer was discovered at that time, and I've spent the last 2 weeks in testing. The cancer is not in my brain, thank God.
The Oncologist told me there is immunotherapy available now for malignant melanoma. 2 types at once, administered via IV (no port) every 3 weeks x4. That's the goal. To turn on my immune system to kill off this cancer. 50% of immunotherapy patients are alive 2 years later. Idk what the percentage is at the 5 year mark. I've avoided doing research bc I'm overwhelmed enough already.
I'm having tremendous pain in my spine, ribs and liver, where the cancer is the worst. The Oncologist gave me some heavy duty pain meds and told me to wait it out until the IV starts kicking in to relieve my pain. He said I would live less than 2 months without treatment so my first treatment is tomorrow morning. The side effects can be gnarly and these infusions WILL kick my butt, he said. I'm ready, I think. Ain't no beauty mark gonna take ME down at 65! 😑
I'm useless at home, so Chuck is doing everything. Laundry, cooking, grocery shopping, driving to appointments. I have a housekeeper coming in to do the heavy cleaning and my stepson and his wife are cooking 7 dinners for us and bringing them by on Saturday. I have to make sure HE'S not overworked during this treatment process to where he gets sick. He's already overcome with worry and shock over all this as it is. I'll ask my stepson to repeat that meal making plan, too...they want to help & we need help.
We've had a lot to deal with the past year, and now my issues, which were there all along, just not apparent until recently. We wouldn't have been able to handle TWO of us sick at once anyway, so this is how it had to play out, I suppose.
The one bright spot I hold onto here is the dime I found on the floor of the ER room I'd been in ALL DAY where there was no dime on the floor. And when the gal was wheeling me back into the room from the CT scan, there it was. I kicked it across the floor to Chuck and he said, "what's that?" I said, "it's a dime from dad, telling me everything will be alright." He was speechless. Dad used to send me dimes all the time after he died in 2015, but stopped the past few years. I have a whole piggy bank full of them.
We can use all the prayers we can get right now, friends. I believe in prayers, in miracles and in signs from our deceased loved ones that they are with us in tough times. If you do too, please send up some prayers for Chuck and I right now.
Many thanks.
A dizzy level of 6 is sure tough to bear. Sorry seems so trite to say, but it is heartfelt. I've been there when my presyncope comes into play. Hugs.
"Be prepared. You’re up against far more than you can handle on your own. Take all the help you can get, every weapon God has issued, so that when it’s all over but the shouting you’ll still be on your feet.
- Ephesians 6:13-18 (The Message)
Jello Floor: 0 - Lealonie: 1
This is what I'm praying for!
I am hoping that the weekend shows some--even if slow--improvement in your symptoms, and you will get rest, build strength for the week ahead.
It is difficult when you get to the place where it is uncertain whether you are dealing with the illness or the treatment of it, and of course medical science is, as my oncologist always said:
"anything but an exact science" (not terribly comforting but true). What they know pales in the face of what they don't yet know.
I hope, whatever next week's tests and consults do, they give you some answers; not knowing "what" or "why" makes enduring double difficult.
Rest and soak in love, and try to get respite from it this weekend; some funny movie or something. Whatever might give you time to surface, float.
I'm thinking of you so much. Your "walking on jello" kind of made me chuckle, because of my balance. I don't feel it in my head but my body kind of goes every which way, no matter where my brain wants to go. Feather in the wind with a floor of jello below. I have to wonder what would happen if I still did drive and got stopped for any reason. Walking a straight line is no longer an option. I practice it with sidewalk cracks sometimes. My doc thinks it wonderful that I walk as often and as far as I do. My telling her it is never in a straight line seems not to impress her. "Take Tai Chi" says she. She's no idea how quickly I would bounce off the floor in THAT class. So, yeah, I walk a lot, but you can never tell where I will end up.
Again, I hope that this weekend is one of building strength and restorative rest.
My brain is working and has been all along, thank GOD. It's not been affected w this reaction I'm having, which tells me it WILL pass at some point.
The floater bugs are still hanging around but my brain has mostly tuned them out.
The hearing loss comes and goes based on me paying attention to it.
I CAN get relief from this dizziness by lying my head down. It's not, therefore, a 24/7 issue to deal with, TG.
I am grateful for Chuck and the friends and family who've stepped up for me here. Some people live alone and struggle to hire help, etc. TG that's not me.
My head now looks like a big punching bag balloon (thanks to steroids) BUT, lots of wrinkles and laugh lines have smoothed out. Like a free Botox treatment!
There are other things on the list too but these are the top takeaways.
Idk how much "confidence" I have that the Neuro will figure out answers for me on Mon. But, he can eliminate some concerns I do have like the severe stenosis in my neck playing/not playing a part in this. I have faith he'll explore ideas that weren't as yet.
The wind was SO BAD yesterday it blew a bunch of shingles off my ROOF! Roof issues give me extreme anxiety so now I'm like UGH. I'll call insurance on Mon and hopefully they will cover repairs. Meanwhile, I'll get practice holding my head UP to look for roof leaks 🙄. Fortunately this is a semi arid climate here w no moisture predicted. Fingers crossed it won't turn into a bad situation.
Llama, I have no idea what I'm doing w these stupid photos yet I can post and upload pics to eBay all day long. The one I have of my wreath is too large to use on AC as an avatar. Screw it all.
Alva, somehow the thought of taking Tai Chi sounds absurd.
Geaton, I read your scriptures and posts daily, so ty for keeping the lights on.
Chuck has a bone density test here shortly and April is ALL appointments for both of us bc Mayo is doing their 1 year virtual follow up with him. April 29th is his 1 yr anniversary of being given new life! We never did hear back from the letter of thanks and gratitude he sent the donor family but that's to be expected. We are forever grateful that their loss and sacrifice gave my dh a new life. We are all organ donors in our family and whenever possible, everyone should make that commitment.
I hope we all have a good restful weekend.
Amazing. We are almost to Chuck's one year anniversary. He has done so well. Remember that person--we thought a guy--who always had the diagnosis for everyone on Forum, Lea. We used to laugh about him (we were pretty certain a him) and wonder if he was medical or not. Gone now, happily as he used to have us going nuts. He would LOVE to get hold of you, Lea.
The botox thing. Lordy. Talk about having to search out the bright side!
I asked Chuck if he recognized me this morning when I came stumbling out of the bathroom after looking at my distorted reflection in the mirror. God love the little liar, he told me how beautiful I am.
Thanks for sharing!
"Just as rain and snow descend from the skies
and don’t go back until they’ve watered the earth,
Doing their work of making things grow and blossom,
producing seed for farmers and food for the hungry,
So will the words that come out of my mouth
not come back empty-handed.
They’ll do the work I sent them to do,
they’ll complete the assignment I gave them."
- Isaiah 55:9-11 (The Message)
I wish I could see your works.
Faith if God may not remove our trials but it gives us strength to over came them."
This was a meme on Facebook and I thought appropriate.
Just checking in and giving u a ((HUG)) ❤
She who leaves a trail of glitter is never forgotten.
It don’t mean a thing if it ain’t got that bling!
Don’t let anyone or anything to dull your sparkle.
People will stare. Make it worth their while. – Harry Winston
Better a diamond with a plan than a pebble without imperfection. – Proverb
Nice to see A.C. taking such interest in keeping us here, eh?🙄
RD, I wish we lived nearby too bc I'd love to see your creations!!
Golden, "People will stare. Make it worth their while." -Harry Winston
LOVE THAT 😁😂
Love how Chuck tells you that you’re beautiful!
Might copy your note to AshleyH@aplaceformom.com, as I reached her there in the past as well. That would be for posts that you press post, it posts, and seconds later it disappears. For me it wasn't a sometime thing. Every single post would go poof. I think the same for Bandy but not certain of her, RR, and Need's exact problems.
It's so good to see you on the High Road posting.
He came through it and out to the other side, despite the nay sayers. Lea, you believed in his chances, in his strength and his courage. You didn't fit him for a shroud; don't fit yourself for one yet, either.
You've got this, whatever the "this" might be. I have as much faith in you as you had in him.
(((hugs))), my friend.
I am deeply moved, especially when everything seems so inadequate.
I was thinking today about the cross. About how so many focus on the fact that Jesus died a violent death, which I think misses the point. Plenty of people have done that.
The real sacrifice was in taking on every sin, every single dark and ugly and vile part of humanity, and voluntarily taking it on himself. To show us love. THAT is the beauty and mystery of faith. And that… that powerful, majestic, unending love is what is sustaining you in your suffering.
That love never tires or wearies, even when the floor is jello and the bugs are getting between you and your view of Honey. Hugs.
During this Holy Week, may God direct our thoughts and attention towards what matters most.
"Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect."
- Romans 12:2
...and the same verse in The Message:
"So here’s what I want you to do, God helping you: Take your everyday, ordinary life — your sleeping, eating, going-to-work, and walking-around life — and place it before God as an offering. Embracing what God does for you is the best thing you can do for Him. Don’t become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You’ll be changed from the inside out. Readily recognize what He wants from you, and quickly respond to it. Unlike the culture around you, always dragging you down to its level of immaturity, God brings the best out of you, develops well-formed maturity in you."
- Romans 12:2 (The Message)
Someone ages ago told me to write my posts in Word and then copy and paste it to AC. I would lose mine because I would scroll back to see what someone said.
((HUG))💞
Was there a pkg from Amazon on the stoop? Not to my knowledge. I sent Chuck to look, the bag was there.
Its a small leather bound green book called 50 Days of Hope by Lynn Eib, a colo-rectal cancer survivor of 20 years and a paid patient cancer advocate at her oncologists office. Imagine? Someone to take a scared cancer patient by the hand and help them wade thru the dark shadows of their fears? Maybe that's my lot in life after I beat the odds here! 😁
Man plans and God laughs, right? The big picture in life isn't always clear and crisp.
Lynn is a pastor's wife who writes a God based take on cancer and offers hope to those of us who lose our way. 50 daily inspirational and hope filled blurbs to read one message at a time. All stories based on surviving the ugly cancer odds our doctors discuss with us, stripping away hope bit by bit. Miraculous stories she's witnessed up close and personal of real people surviving and thriving a decade or 2 after a deadly cancer dx.
My DD is not a religious person but felt compelled to buy a copy of this book for BOTH of us to read daily. The first writing brought us both to tears as the words were like balm to a suffering soul. She's struggling more mightily w my dx than I'd even realized. God suddenly becomes a great idea to rely on in such times. Not that He wasn't before......Hes just a bit more "real" and needed right now.
I woke up today, Palm Sunday, and popped out of bed to get my walker to use the toilet. As always. Except today the dizziness was far less and the walk to the WC was uneventful. I carried my walker while taking normal steps, believe it or not. I'm at just under the 6 week mark for this toxic reaction to the immunotherapy so I'm sure there's a road ahead for me. But I have some hope restored inside me now that maybe I can continue treatments to kick this cancer to the curb.
I slid onto a patch of black ice in Jan and my car is still swerving all over the road. I can't get it to stop and let me off this ride where all I want to hear is "oops we made a mistake, you don't really have cancer after all." And your car will come to a complete stop so you can stop shaking and get out onto firm ground again.
But that's not going to happen, so I'm buckling in for the ride of my life, with your help, with DD, DS and Chucks help, with my little book of Hope to read daily, but most of all with God's help.
It never ceases to amaze me that when the going gets really tough, even those non-religious folks can't help but turn to God. Who else can we turn to that will give us the strength, peace and comfort we need for the journey we're on? No one that I know of, other than God.
I think we often think that we can do all things in our own strength, but I do believe that most learn otherwise when we've hit rock bottom and we have no other choice but to rely on the Creator of the universe.
I'm so glad and grateful(as I know you are too)that you have such a wonderful support system in place for this journey you're on. And I do believe too that God will use you and your story in a mighty way someday to help others going through similar health issues.
Enjoy the day the Lord has made, and know that you have lots of us on here lifting you and Chuck up daily in prayer.
I may be starting to believe in miracles.
I always cared for you, Lea, but I am now just in love with your family.
I had such a crazy mix of anger mixed with hope coming into this weekend, Lea. I just kept thinking: "PLEASE......can we not just have a good weekend now?
She NEEDS a good weekend."
(IF there's a god I have no problem whatsoever shouting at him).
IF my mental wailing was a prayer, then it was answered.
If a wish, then Tinkerbelle is out there buzzing around somewhere with her wand.
I don't care who, how or why.
Your beautiful note brought, I would bet, a huge expanding of our communal chest, a massive intake of restorative breath for those of us who come here so many times daily hoping.
A huge circle of hugs around you. And one for DD and Chuck as well.
Psalm 103:2-5
Bless the Lord, O my soul,
And forget not all His benefits:
Who forgives all your iniquities,
Who heals all your diseases,
Who redeems your life from destruction,
Who crowns you with lovingkindness and tender mercies,
Who satisfies your mouth with good things,
So that your youth is renewed like the eagle’s
This morning’s posts have me in tears.
He loves you so, LL1.
We do, too.
And a life thought from the pastor at church this morning. He said many of us don’t really realize how fast life passes us by until we look over at our nightstands and see that everything we use to see with, to hear with, and to chew with are spending the night there! Ha!
There is nothing I can do but wait this out, see the Neuro, get the MRI, and have the meeting w UC Health and the melanoma specialist there. And keep my stress and frustration in check to the best of my ability after all this time of disability.
In any event, Immunotherapy is the Wild West no matter who's administering it. Side effects are far reaching and unknown since every human body will respond differently and up to one year after a treatment takes place.
Ty Daughter, the book is amazing! 😍
Hothouse, ty.