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.
https://www.google.com/url?esrc=s&q=&rct=j&sa=U&url=https://www.nbcnews.com/health/cancer/new-cell-based-therapy-melanoma-effective-existing-treatment-trial-fin-rcna46935&ved=2ahUKEwi6wqnKzev9AhWNjYkEHUX7B3oQFnoECAoQAg&usg=AOvVaw3GyD1fb9PKFumi0Y-KG9Um
I will speak to Dr C on Thurs to see if they even offer such trials or if I'd be a candidate.
Thank you.
In lieu of that, I offer you this song. It’s the one that Cwillie references below.
Abide with me:
https://youtu.be/GnagUvvpGjw
Much love to you and Chuck.
Also , the immunotherapy kept working for awhile. So like his second and third scans were better than the first set of scans taken after therapy was given . I’m not sure but I think it was somewhere like over 3-6 months that each scan showed improvement from the previous one . So maybe that can be the case for you too .
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469590/
Wishing you a night a peace and deep rest.
Thy good will be done, Lord.
"When the cares of my heart are many, your consolations cheer my soul."
- Psalm 94:19
"If God hadn’t been there for me,
I never would have made it.
The minute I said, 'I’m slipping, I’m falling,'
your love, God, took hold and held me fast.
When I was upset and beside myself,
you calmed me down and cheered me up."
- Psalm 94:17-19 (The Message)
LL, in spite of everything...may your soul be cheered today! xoxo
I just read SP19690 post from nih.gov - article on encephalitis as a rare side effect of the immunotherapy drugs. Bandy made me read it, and asked if I thought you should consider keeping that neuro appointment.
Truth is that at this point, what do I know, given the researchers themselves are only beginning to have a clue on this one.
I just want to make sure that you speed read this one if you feel up to it, Lea. Or ask DD to check it out for you and let you know what she thinks. Trust you to make decisions best for you.
SP's post: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469590/
You must forgive us if we are all out here scrambling through the internet trying to find "THE ANSWER".
But I promise you THIS! The best folk in medicine know each patient is a mystery, a puzzle they MUST solve, and this is what they do, exhausted they may be, for patients they love.
So I am saying--I am ASKING--that you look on this as a manifestation of the love this entire Forum has for you. Whether it is an article or celery juice, we are simply desperate to help.
I swear, if you tell me to, I will NEVER go "all nursey" on you again.
And wondering, too, what DID the doc tell you to do about the pred now? Are you still on it? (Speaking of going all nursey).
It is now ALL in Gods hands(as it always has been.) "And we know that in ALL(my emphasis added)things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28.
May you see Gods goodness even on your darkest days and hopefully you can feel all the love coming from us on this forum,
And may heaven be overflowing with all the prayers being sent up on your behalf from the good folks on here.
We will try our best to be strong for you on days when you can't be.
May God bless you and keep you, and make His face to shine on you and give you His peace.
Alva, I read the whole article out loud to Chuck. I take no offense at ALL with everyone trying to help me or you acting nursey. I appreciate it in fact. I see no reason to visit a neurologist unless my oncologist cannot get rid of these symptoms in time. Truth is, it's all guesswork w/o empirical evidence to point to this being A B C or D. More "follow my finger" and all that chit has been done 100x. Dr C made it clear a neurologists eyes on me does not hurt unless he had ideas on treatments they'd disagree with. Oncology prevails. Pointless and this old lady's tired and worn out.
I've had all those tests mentioned while in the hospital and am obviously having some sort of irAE from the Obdiva and Yervoy duo treatments. No brain swelling showed up on MRI or ct scan. Which doesn't mean inflammation is NOT the issue. What I've not had is hi dose IV steroids or antiviral or an EEG. I will speak to Dr C on Thurs.
Im not really better from prednisone yet, just up at 330am each morn now even with Xanax. I can hold my head up about 2" higher now where I haven't been able to before; it just hung down. Head still swimming like I'm dead drunk, still needing walker 100% of the time. Hearing improved from 10 to 8, I'd say, after 3rd day on steroids. He also said me taking 6 pills on Sat by mistake was no big deal, in the scheme of things.
The main takeaway from that article was no more treatments for me, it's too risky. Which I agree with. Scary stuff. So again I'll leave this in God's hands bc that's the only sane option today. What's wrong at this very moment? Nothing. I'm sitting on my recliner w Honey on my lap and I'm not dizzy if I don't move my head.
Except I caught Chuck crying this morning and THAT is what seriously kills me here. In 18 years together, he's been my rock, or at least it's felt that way. God give us the strength we need to face all this together, that's my prayer. I wish I could drive bc there's a beautiful old church nearby that I'd love to go visit, alone. It's what I did many years ago when I was trying to get sober. I visited that church and got down on my knees and asked God to help me w something bigger than me. And He sent me to AA the next day to humble myself and admit that I was powerless over alcohol, and that's the moment when I began to heal.
When my Mom was in her last days she had an indwelling catheter pullling on her, causing pain. I went to the desk for "good" tape, came back, and was with her in the bathroom, knelt down between her legs in my best skirt and shawl (I NEVER EVER wear skirts) and her sitting on the toilet, Late 90s, so ill, so reduced, and I am just taping away when I hear from over my head......
"Just STOP treating me like a NURSE!!!!!!!".
in her best "Francy-is-fighting-mad voice".
Will never forget it. The pain of it. And the beauty of her strength.. Her FURY!
But the truth is, as Eric Liddell said in Chariots of Fire:
"..thanks for reminding me that I AM..............and shall ever be whilst I breathe..................................a NURSE".
(Wait. Changed that last a bit. He actually said "A SCOT".
Favorite film after Zeferelli's Romeo and Juliet. Know every word in the script by heart by now, I think.)
Please let Chuck have his tears.
Honestly they wash us clean, give us strength, renew us. If they build in our hearts and head without release it's impossible. Let him express all he is feeling.
I remember after a year of my chemo I had a scary chest xray and had to have a scan. I pretty much had myself all dead and buried. After the scan I wouldn't leave the place until they had someone read it. As I was a nurse employee they got the radiologist who came out and said "Well, I don't know what that shadow was, but there's not a thing there NOW".
N. and I made it into the hall where he caved, grabbed me and began weeping, holding me and saying "We have more time; we have more time" over and over. His weeping made me weep.
It's just a release. A release of all the stuff jamming our heads up.
You made me laugh with "more follow my finger".................the neuro exam.
Of course Chuck can have his tears Alva, we all are entitled to our valid emotions. It just kills me to witness that, was my point. It's the one thing that shatters me 😟
I am so glad you have scheduled the talk and it seems to me so preferrable to go to the office where the only other things, other than tests, he can do THERE is say "follow my finger".
My love to you woman.
So glad that you are able to get a video appointment. A long car ride would be awful right now.
I am thanking God that you had time in your chair with the ever faithful Honey with you.
For wisdom for your neurologist. (I’ve had a spinal tap. It wasn’t the worst test I’ve ever had.)
For energy and fortitude.
For you and Chuck to be in even greater unity as you travel this road together.
Xoxo
"But He said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' "
- 2 Corinthians 12:9
LL, may the power of Christ enfold and amaze you and Chuck today. (((hugs)))
This describes peace that doesn't make sense given the circumstances. It's peace in the midst of a storm.
In Mark 4:9, Jesus says "Peace! Be still!" He says this in the midst of the storm, so we can trust Him because He alone offers the peace our hearts long for and need.
But remember that peace is more than an emotion, peace is a person....Jesus Christ, The Prince of Peace.
Praying for Christs peace to be with both you and Chuck as you walk this journey with Him. He's got you! Please don't forget that.