
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.
Praying especially for wisdom and compassion from the doc.
Looks like each day things improve if just a little. My ((HUG)) for today. 💞
Thinking of you, and just want to say that I am not surprised by your daughter’s behavior. You set beautiful examples for her to follow.
Sometimes we wonder if our children notice what we teach them by our example. You have proof that your daughter was watching.
Sending a bazillion hugs your way today.
I love all of those verses! Proverbs is full of insight and wisdom. Thanks for posting these verses.
Looking forward to seeing what the kind Neurologist had to say.
He said to stay on the steroids for as long as they're helping me, and discuss it further with oncology.
I can have a treatment while on steroids but it cannot be even close to one I've had before bc it's too risky. This may be where UC Health will be useful and bc they may have had experience with this toxic reaction too.
He saw no need for the neck mri and the lumbar puncture would only happen IF I get worse.
I feel good that I saw him, although now I wonder if this will clear up or not?
One day at a time, I guess. I'm happy to know there's no worry of brain damage or encephalitis etc going on with me, that's the main thing.
(((Hugs))) and prayers continue...
I am very happy that you were pleased with the outcome of your neurology appointment.
It makes a huge difference to go through a difficult process knowing that you trust their professional opinion.
As always, I am sending my love, best wishes and prayers your way.
Thanks as always for your update to us.
I am relieved that there is someone who has said that this is almost certainly WHAT it is. That they don't know for how long or whether it will get better is concerning, but it seems as though it may be already just a bit better. Nerves are slow to heal, anyone with sciatica can vouch for that. They take their time. I agree that they cannot survive more insult without dire outcome.
The other thing I like about this is the amount of putting the case together he did, the amount of outreach to the other docs, and the fact that you won't be wasting the time and energy you need to heal with getting more scans and sticks and frustration.
What now will be the next move?
Is it a consult with the UC team to see where this stands NOW with PET, then what if any treatment can/should be tried?
OR
is it a bit of time in rest and healing and wait and see given that the symptoms you have now seem only symptoms of treatment side effects?
I think I have put together the outcome today. It is a bit difficult to parse out the good news-bad news kicks of this whole thing. Kind of like a teeter-totter.
I think best is that you were told the TRUTH as they know it, that they are clearly TRYING, and that you were treated with dignity and honesty.
Love to you, woman.
Little mercies… I know when we hit those dark nights of the soul, we live for the little mercies.
May His face shine upon you and may you have a peaceful night’s rest.
Things ARE a bit better, too, bc I can walk more normally now. And I heard a song clearly on the radio for the first time in ages today😁 when I had been hearing BLAHBLAHBLAH only.
The Neuro said I CAN take another treatment (totally different one) even while on prednisone so.......we will see what Dr Hair Gel and the other specialist have to say on that.
I have to remember this: immunotherapy can kill me. The warnings are very clear. So can the cancer. The author Lyn Eib who wrote the book DD gave me talks today about how she had to take toxic chemo treatments she was allergic to every week for a YEAR! She never thought she'd make it, but she did bc there was no other treatments available to her in the 90s. My choices will be one potentially deadly/harmful/disabling thing or another for a year or more, who knows? I'm trying to wrap my head around THAT truth right now. This is and will be an ass kicking I cant even fathom. I can face that knowledge and deal with it or give up and like I've said before.....
AINT NO BEAUTY MARK BRINGING THIS OLD GAL DOWN.
Come what may. And w God's help, I'll face this challenge with or w/o great odds or firm answers or knowing all there is to know about outcomes. Ignorance is bliss is certain ways.
Well I took the muscle relaxer last night and felt sleepy, no brain zaps, and slept for about 6 hrs straight! No adverse effects this morning or extra dizziness to contend with. Thank God, the long trip to the neurologist was worth it just for THAT. And stopping off at Kneaders Cafe for cinnamon chunk bread to take home.
And the moon face continues to widen here folks 😑🙄
Happy had-a-good-sleep-the-night-before Tuesday! So glad the neuro had some good sense to share with you. Have a great cuppa' coffee and some of that cinnamon bread, celebrate the sleep, and eff' the freckle! :)
And cinammon chunk bread, as well.
As to the moon, avoid mirrors. If you make it to 80 you are gonna have to do that ANYWAY. It's always quite shocking when I get a glance in the glass and realize I had a colic sticking straight up all day. As I no longer even bother with a touch of mascara anymore there is honestly no reason to look in a mirror. Unless, I mean, I feel another whisker.
Tynagh......I just poured coffee when i read your hilarious post. Snorting coffee thru the nose is a sinus cleanser, I must say! 😂🤣
Also spitting out my water here.
I think I will borrow your line and from here on out sign my posts with
FTF,
C.
Also about you being able to walk better.
And hear better.
Praise God!
FTF,
C.
((HUG))💞
Smile, sparkle, shine.
Start each day with a grateful heart, and a handful of glitter.
Everything has beauty. But not everyone sees it. – Confucius
Do what makes your soul shine.
Less Bitter, More Glitter.
I can identify with your crepy arm. The circulation in one of my arms is a bit compromised from iv's from the past. Sometimes the lymph flow gets blocked. This one day I massaged it and suddenly the lymph flowed and my forearm went from being somewhat swollen to having little fluid beneath the skin. My skin hung on my arm like a wrinkly old bit of fabric. It was the ugliest thing I have ever seen!!! Yuck! Now I am wearing my compression sleeve more regularly.
1. “To become beautiful it had to break.” — Aura Trevortini
2. “My heart full of gold veins, instead of cracks.” — Leah Raeder
3. “Your cracks can become the most beautiful part of you.” — Candice Kumai
4. “The struggles will become your story, And that’s the beauty of Kintsugi.” — Candice Kumai
5. “Your wounds and healing are a part of your history; a part of who you are.” — Bryant McGill
6. “Kintsugi: Embrace your imperfections and find happiness—the Japanese way.” — Tomas Navarro
Actually, your phrase is totally customizable too! In my mother’s case, it would have been FTP, for her Parkinson’s disease.
Lea,
Feel free to fill in the blank for whatever is particularly bothering you on that day. I bet many, many people have said, FTD, for Dementia or FTA, for Alzheimer’s disease.
Sending all my love and support to you each and every day.
Once a poster here claimed I looked like Sharon Stone.
Still think so?
“There is a crack in everything, that's how the light gets in” - Leonard Cohen.
It's how the light flows out too.
I'm so old I'm even losing my whiskers.
It used to be "You know you're getting old when you have more facial hair than your teenage sons."