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.
While I was doing just that, I received mail from a worthy cause to which I contribute financially. When I opened the envelope, out fell this printed Bible verse:
"The Lord your God is in your midst,
A victorious warrior.
He will exult you with joy,
He will be quiet in His love,
He will rejoice over you with shouts of joy."
.....Zephaniah 3:17
So of course I feel that it was meant for you and that my job is to pass it on! Much love to you.
When does DD get back from her vacation? So glad that went well for her.
Will look in for your daily update. To see you out there posting always feels so good for me.
I've managed to calm my mind down a bit and that allowed for a little more sleep last night. I feel like the intense dizziness may be slightly improved today, not totally sure though. Ridiculous isn't it? I'm going to get my hair cut and dyed at 2 pm today, Chuck will drive me of course. I feel compelled for NORMALCY here at some level. I told Chuck I want to go out for breakfast tomorrow after the meeting with Dr C if he doesn't reduce me to a mass of blubbering tears. DD is coming with and the 3 of us plan to be armed w questions regardless of HIS mood of the moment. The man runs hot and cold as an old faucet and we need to push past all that chit.
Pizza is 2nd on my list eaten IN the restaurant bc life must move forward now.
Being cooped up in here since mid Jan is very tough on the mindset.
I'm sending sp's article to DD as well to look over.
Wishing you all a good day and sending you my love for all your warmth and good wishes. It means a LOT. We may not "know" one another in person, but this is as real as life can ever get, folks. Thanks for sharing my journey with me.
Golden, what supplements do you take? I'm taking the liquid turmeric my son bought me for brain inflammation along w the prednisone. Hoping for a better answe from the neurologist once he looks over my chart on Fri. I have no pain just intense dizziness. SOMEONE has to hone in on this and figure it out! I'm sorry you suffer from similar issues as well.
Did you mean in your head secondary to whatever is happening there or did you mean no pain in body as well, or improved?
Also, what of the shortness of breath, the edema? Same or improved?
I got kind of shocked by your saying no pain.
Whatever is up I am thankful you are pushing for "real life". Don't push too hard too fast.
Hating to admit I am happy DD is back. I don't begrudge her the time, just feel better with her at your side along with Chuck this week.
I'm able to move at a snails pace w my walker and then feel exhausted after the least exertion so no chance of me overdoing things 😁😂🤣
As it is not clear if brain inflammation is your issue, they may not help. On the other hand likely they won't hurt you either. That being said, I never know how a supplement will affect me so if I get any reactions I don't like I stop taking that substance.
This regime has gotten rid of the brain fog and pretty well gotten rid of the FM muscle pain which seems to be due to brain inflammation.
It's my research and all available via Dr Google if you know where to look I do have a M.Sc. in Human Physiology which helps.
I pray that you benefit from them.
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Anti-inflammatory (brain) and neuroprotective supplements
x2 = twice daily, * means take with fat for better absorption.
• Dextromethrophan 20 mg x2 (Robitussin)
• Quercetin* with bromelain or Vit C. for better absorption 400 mg x2
• Resveratrol 200 mg (up to 1000 mg.)
• Acetaminophen 500mg x2
• CoQ10* 200 mg x2 or more
• Fisetin* - 100 mg
Fisetin is also anti cancer.
Fisetin * 100 mg/day stops cancer cell progression and kills cancer cells. I have R on it to improve his PSA and dd wants to take it in case of her breast cancer recurring. It is, as well, neuroprotective and anti inflammatory and also senolytic (anti-aging),That one's a bonus!
Most of these are available at our Prime friend. I get some on ebay and other places. Let me know if you have trouble finding anything at a not too unreasonable price.
Some *are better taken with a meal with fat for better absorption. I use a spoonful of peanut butter if I am not eating.
Acetaminophen surprised me. It’s not the pain killing action that we are used to, but actually an actual anti-inflammatory action on the brain.
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As are we all, wishing, hoping and praying for good and successful answers to your medical issues. God knows the answers.
Your honesty and wit have been an inspiration to us all, and we are ALL hoping and praying for your complete healing.
Know that you are loved.
And Alva LOATHED physiology. Anatomy was easy. Just memorizing 209 things and where they are and what they are called. Phys you have to understand chemically how everything works. It is madness. Sheer madness. I don't know how ANYONE gets a masters in it.
Golden is right. RNs hate it! Hee hee.
As always I am thinking of you and thankful that you have joined the AgingCare forum. You have helped so many of us when we needed sound advice or just someone to chat with.
We all support you and are continuing to keep you in our thoughts, hearts and prayers.
"So speak encouraging words to one another. Build up hope so you’ll all be together in this, no one left out, no one left behind. I know you’re already doing this; just keep on doing it."
- 1 Thessalonians 5:11 (The Message)
LL, thinking of you and Chuck this morning and every morning!
As hard as all of this is, I am believing that your testimony of healing will change many hearts and save souls.
You keep on keeping on and keep the faith, you are already healed by HIS stripes!
Great big warm hug my friend!
And I, brethren, when I came to you, came not with excellency of speech or of wisdom, declaring unto you the testimony of God. [2] For I determined not to know any thing among you, save Jesus Christ, and him crucified. [3] And I was with you in weakness, and in fear, and in much trembling. [4] And my speech and my preaching was not with enticing words of man's wisdom, but in demonstration of the Spirit and of power: [5] That your faith should not stand in the wisdom of men, but in the power of God.
This 4 u!
My first attempt at a home die job 4 decades ago had me buying permanent color instead of temporary, had the box saying ash blonde while my hair turned alarming-orange which wasn't a good look on me. Resulted in my soaking my head in "drabber" recommended by hairdresser/friend which didn't help a whole lot. Alas, I was then young and beautiful, and decided to embrace the gray thereafter. Been cutting it short short ever since.
But YOU, Lea? I see you opening the salon door all Cher- in- Moonstruck. Remember when she got the hair done and bought the beautiful dress for the Opera? My third favorite film.
Awaiting update on MD Dr. C. Hoping you get that breakfast out. You are so much on my mind and in my heart.
PS RealyReal, so very good to see you here. I have missed you awful.
Looking forward to seeing how you’re doing, today.🌷
DD came with us and feels good about him cutting down my prednisone dose bc it's not working and just keeping me awake all night.
Neurologist will weigh in tomorrow. Just hope this chit isn't causing me more grief than it's cutting, God help me.
Too tired for breakfast after this, just need to crash at home.
The hair wasn't too much yesterday Alva, I actually look nice but a very far cry from Cher, which is fine bc I don't care for the broad at ALL :) Plus I have no botox in THIS face! Ha!
Itrr nice to see you!
Bbl
I hope this is going to work. They sure do show ads for it on TV. I see one a night, usually for Crohn's--I think that's the med, anyway.
The black spots are new as of today, or just an increase on the visual symptoms you were having?
And doc saying you can have "one more bag" means of this stuff, not the immunotherapy I assume? And then the 13th for PET.
Of interest here is that you are now suffering from the treatment, while it SEEMS like the treatment did smash the daylights out of whatever was causing all your bone pain, ribs and etc?
Thanks, Lea, for your update. I know you know we check in often in the day looking for it, but if you are too wiped out on any given day we understand that you are likely duking it out with some new treatment or other.
I started turning gray in my late 30s. Tell my oldest it her fault. 😊My 40s was a nice salt and pepper. 50s and 60s, whiter and whiter. I chose not to color because of the having to touch up all the time. I get compliments all the time from the little old ladies telling me how pretty my hair is. I have kept it short since I was 21 and I have natural wave. Oldest is 45 and dying her hair because like her Mom she went gray early. Youngest has her Dads hair, at 76 he still has a lot of brown with some white.
Here's my ((HUG)) for the day. 💞
Chicken noodle soup and baked rolls for dinner.
I hope that you will be able to rest today. Always praying for you.
"better not touch this chit or you will only WISH you were dead". The truth is that they have to give ALL drug warnings according to ad controls by FDA/government.
All I am saying here is that if you put up an ASPIRIN or a TYLENOL they would have to tell you all about abdominal bleeds, brain bleeds, Guillian-Barre and how you will likely DIE if you take it. It's what they do and what they have to do.
Just saying, Lea's doc is trying to alleviate her severe syptoms when the prednisone isn't working to do that (and WOW, you should hear the warnings on THAT one). I know he is weighing everything; we have to trust that.
Meanwhile, just look up any medication, and the side effects will knock your socks off. My own nasal spray kind of rivals rattlesnake venon for warnings. even as an ordinary over the counter med.
The bitter truth of being Between A Rock And A Hard Place, somewhere nobody should evvvvvver find themselves, with God's help, amen.
****Use caution when thinking "it'd be better to suffer from ailment A than risk treatment B for possible side effects" is my message. Until one of those mind bending ailments actually strikes, the black box warnings seem a lot more important than they turn out to be in times of desperation. *****
But here I am, still alive! The infusion lasted a very long 3 hours and was preceded by a meeting w Dr C and then the palliative care team during. "Palliative care" is hopefully another term most of us won't have to deal with in the near future. 🙄 Or having friends and family shrink away from you after hearing Such A Terrible Diagnosis. I sat in my hairdressers chair for 2+ hrs yesterday where she said 1 sentence and ran off afterward to smoke outside and Lysol herself up, and eat s few mints. Hint: it's not working, and ps. Who cares anyway? Your life chica, you get to live it on your terms.
This is why I am SO GRATEFUL FOR YOU ALL! 😘😗😙😚
But I divert. Bc it hurts to be ignored by loved ones who Have No Idea What To Say, like my half sister, who texts once a week to "see how I'm feeling" and send praying hands emojis except while vacationing in the DR for 10 days where there's apparently no emojis or texting privileges. Snicker. But lottsa cocktails w pretty little umbrellas in them. Live your life sis, I don't begrudge you, but find 10 min to use your phone to ASK your sister how she's doing and put aside your own discomfort, eh? Idk, maybe I'm not being fair.
Anyway, blessedly, the 10000000s of black floaters disappeared from my vision shortly after the infusion ended. I've never felt so bone tired in my life, like all my blood was drained from my body. Too wiped out to know WHAT I was feeling. I crashed at home for 2 hrs, after taking an RX extended release Prilosec which finally helped my poor stomach from the steroids, and now I DO feel better. Although it's supposed to take a couple of days for the infusion to restore some of my immune system function the immunotherapy harmed. A step forward and a step back, both at the same time. Dr C said he HATES the duo infusions bc he knows they wreak havoc on the body, but it's a patients best chance to go into remission. A double edged sword which I can vouch for.
The double vision has subsided some, too, for which I'm grateful. I don't feel quite so dead drunk inside my head, either. Thank you God for small favors right now!
Then I had a sheer panic moment at home when I realized I was pooping bright orange and thought OMG NOW THIS FUNGUS THE CDC IS YAPPING ABOUT HAS OVERTAKEN ME? It's the Turmeric 😂🤣😁 God bless my son and his quack of a chiropractor who fancies himself a Curer Of Brain Inflammation Everywhere, eh? 🙄 If nothing else, Chuck and I had a well needed laugh over a calamity averted.