
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.
I am so happy to hear that you were able to sleep after dealing with so much. I’m sure that exhaustion doesn’t even begin to describe how you felt.
Sending all of my love as usual.
So now UC Health put in an urgent request to Kaiser for the spine surgery to happen next tues. They have 72 hrs to respond. We will see. O/w Kaiser will have to schedule me for the near future hopefully. UC Health wanted me to go from there to rehab yesterday and I was like, uh, no. Pt evaluated me for safety w the walker and strength, determining I was fine w both, so no ty to rehab. How do you spell Enough is Enough Already? We're not curing this dizziness folks, one way or another. Period.
My IVs all blew while I was hospitalized due to high dose steroids causing fragile veins, so I had to have a glide-line installed in my upper arm in a larger blood vessel. Even blood draws were terrible from regular veins that were not an issue beforehand. Steroids are dangerous. Hopeful to taper off this crap w minimal issues and before the rest of my bones disintegrate 🙄
Gershun, my dizziness is 24/7. I was given an RX for Atarax to help me sleep. Slept like a LOG for 8 hrs straight which helps A LOT w worry and obsession. I highly recommend it as its not a benzo.
Also, for the arrangement to be smooth for the surgery.
So glad you’re him!
Check for emjo.
It's hard to rest in God and to stop obsessing and worrying. I hope you are better at it than I am. I think I need a swift kick in my spiritual behind now and then.
Golden, yes I look forward to getting your message re: NDE.
Ty for the tip grandma. 😍
FG, ty for the lovely prayer.
Golden, check your messages. And ty.
What comes to mind is that -
... “With man this is impossible, but with God all things are possible.” Matthew 19:26
I believe this to be true. God has a plan for each of us and we can only walk it one step, one hour, one day at a time.
God is using you to touch many hearts. You are a strong warrior but even strong warriors need rest. I pray you get good rest at home with your loved ones. You dh and particularly your dd are a most wonderful support and advocate for you. What a blessing!
I have written out my NDE but would prefer to send it to you privately rather than post it here. Not sure why, except it is very personal. Gershun said she was interested and I will send it to her in a pm. I can't send to you as your messages are turned off and I respect that. Would using someone you trust as a go between work? Let me know. (((((((hugs))))) and love 💛
No change in dizziness. Which is disappointing I will admit. So is the prospect of going into surgery this debilitated. At least there's no general anesthesia involved, but 1-2 weeks of recovery 😐
PET scan scheduled in 9 days.
Now starts the taper yet again from an even higher dose of steroids, God help me.
Thats it for now. Glad to be home with Honey by my side.
Thanks as always for the uplifting words Ladies.
He is so good like that. I'm glad that you're getting to witness it first hand.
You will have such a powerful testimony when this is all said and done, and I have no doubt that God will use you in a mighty way to be a witness to others who are going through similar things as you.
I want to share a prayer that I read in one of my devotions this morning and couldn't help but think of you, as a lot of us on here lift you up daily in prayer and it's nice to know that God doesn't get annoyed with us for doing so. In fact He welcomes it.
"Heavenly Father, thank You that You don't get annoyed or frustrated with my persistent asking. Thank You that You are a Father who lovingly bends down to listen and invites me to ask You for my daily bread.
Today Lord, my daily bread is Lealonnie and her complete healing. Help me to remember Father, that You delight in hearing my requests. I praise You in advance for how You will answer and provide.
In Jesus' name, Amen."
When do you go home?
I love scriptures regarding hope.
Sometimes, hope is all that we have. I don’t think we should ever take someone’s hopes and dreams away by not believing in possibilities.
There have been many times in my life where I have lost hope and became discouraged. Then, others shared their hope with me and I was able to find hope again and things usually worked out.
Thank you for sharing scriptures on hope. I know that Lea will appreciate your messages of hope, so will many others.
Your daughter thought of everything. I see those commercials for Lume. Haven’t tried it.
Dd brought me a nightgown, slippers, Lume deodorant (hint for steroid stench?) A Vornado fan w remote and a cooling blanket for the vicious sweats I'm having, so that was sweet and very helpful.
Thank you for our dear friend. She’s such a treasure to us.
And, please forgive my uncharitable thoughts about the docs that overlooked this break.
Amen!
Your daughter sounds like one smart cookie! You taught her well. 😊
PB, the pain now is so much better in my thoracic spine. What irks the snot out of me is the lack of looking into this the other hospital did and Dr C too. Knowing the severity/size of the bone tumor, and that it was deteriorating with immunotherapy......what happens next w the spine/bone structure???? Hello? 😑
N HWM, ty 😍
Golden, fierce eh? Idk about that. I keep thinking about falling in my closet last week and how that could have turned out. 😑
I've had 2 IVs go bad now and swell up the tissues in my arms. So they had to put one in my upper arm in a large vein just now which we hope will hold for this last IVIG infusion. Still waiting to hear the surgical plan moving forward which I suspect will not happen here at UC Health but at Kaiser instead.