
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 slept better last night and took nothing in the way of even a Tylenol. Pure exhaustion is more potent than anything I guess. I'm ready to face another day today, so I woke up to do so.
One day at a time, I guess, although some days it's more like 1 hour at a time.
Bless you Lea. You are a child of God.
That is my prayer for you today after a rough evening, that the Lord will renew your strength, so you'll be able to run and not grow weary, walk and not be faint, and that soon very soon you'll be soaring on wings like eagles.
Thanks Alva. You say, "I can't believe that in the midst of all that you brougtht to your daughter this moment on her 30th BD that she will NEVER EVER EVER forget, especially that it was an agreement you and her dad made, and that there is great peace between you two now. This is a gift she has forever, and I don't just mean the jewels."
How I honestly managed to pull THAT rabbit out of my hat is a miracle. It makes me question how on earth I can make jewelry bouquets and vases when my ability to function at ALL is this compromised. I guess I won't borrow trouble on that matter right now since today's goal is to keep the waterworks turned off and DRY🙄. Small goals seem more manageable right now.
Amen Funky. From your lips to His ears today.
Kaiser here has no retina specialist (yes, in SF, no retinal specialist) so they are farming their patients (N. being one now) out to another group.
They will pay. But he has to go to THEIR hospital for the procedure and already being warned to get ready to cough up 40K by the non-Kaiser hospital while Kaiser waves it's hands saying "No, we'll pay". What do you bet the bills flood in? It's how it is.
And YOU are truly way too ill to have to handle that, so I hope DD and Chuck can do it.
It is so tough right now for you, Lea. I don't even know what to say. Seems just so tough right now. Everything uncertain and in flux while you pray for just moments of peace and feeling comfortable in your own skin.
I will stay tuned in again today.
Cold here today. Thats what u get this time of year in the Northeast. The temps just go up and down. Them bam its 85 and 90 and humid. Not a Summer person. Lilly white and don't tan, just burn.
Looked up ur Swarovski mini animal collection. Love them! I have a David Winter cottage collection and I collected dolls. Have given some dolls away to a niece and donated to the church for auctions others. The ones I have kept my daughter gave me and a few my Mom. I use a makeup brush and an artist paint brush to dust them. Yep takes a while.
BIG ((HUG)) for today 💞
We pray right now in the mighty name of Jesus for our friend. We may not have ever been in the same room, but she sure is our friend.
Lord, we are begging for mercy here. The side effects are disabling Lea, and all our hearts are breaking for her.
We all just want her whole again.
Please, dear Lord, the floodwaters are up to her neck and there is NO ONE to help. No doctor with any wisdom.
But in your Word says that YOU are mighty to save. YOU are the healer. YOU are the one we can call on when we need wisdom. Your Word says that if we ask for it, you will give it.
So, we are relying on you you to give that wisdom.
We are relying on you to save.
We are relying on you to heal.
We ask this in the name of Jesus.
Amen.
I often take a look when I want to lighten my spirits. Enjoy! :-)
Sending my support and love to you today and everyday.
Every time I receive a dime in my change from a cashier, I say another prayer for you.
Thats a good idea how you dust the cottages. I have to wash the Swarovski animals in soap and water individually from time to time, which is tricky. That'll be one job I'll put off for awhile lol.
Fawnby, ooh, ty for the site! Ever since I was a kid I've been obsessed w jewelry. I even have (literally) dreams of creating a line of my own pieces but then the designs disappear from my mind when I wake up.
I wish we had a photo spot here on AC to share pictures, wouldn't that be fun?
Cxm, your prayer for me threatened to turn on the waterworks again ova here! 😁
Alva, after K said no referral is needed to UC Health 3x, they backtracked and put one in 2 days ago..which will take 2 weeks to approve 😑 UC Health is trying to get me seen asap after it's HOPEFULLY approved, although if those dimwits try to deny me a Medicare right, I will appeal.
You have the weight of the world on you, sister, and the red tape probably feels like a freaking anchor added to everything else.
Your time with DD is so touching and I guarantee that you thinking of her and doing that for her in the midst of your trauma meant the world to her. A mother’s love can be boundless, and she has felt yours.
How are you feeling this a.m.? I echo Hopefloats, in that I am but one of many of us who check in every a.m. and every night to hope you feel better. Between those checkins you so often come into my mind.
Count me as one more hoping that there are answers out here that can help you.
I would love to see all your jewel projects. I bet they are beautiful. Me, I am not artistic. My girls are but that's the the Dad side. I do crochet but not like I used to. This is my old Flicker Page. Read the captions because everything is not mine.
https://www.flickr.com/photos/15772172@N07/
Hoping this is a good day for you. ((Hug)) 💞
JoAnn....cool Flicker page!
Pecan I just lost a long post too.....what a PITA this site is. 🤐 I do appreciate your research efforts on my part, too. Bless you.
Hope, you of all people have had THE best most comforting words for me. Nobody "knows" what to say in times of crisis, but compassion and empathy are always well received. I don't need guidance on how to pray or what tenets to believe in, just a kind word of understanding and support is best. Of course, links to good medical info and personal experiences also go a long way in my book. 😁
Today we're going to try guided walking w Chuck holding my hands and the walker wi reach, too. I feel compelled to see what I can or cannot do, which has been practically nothing this whole time. Last time the guided walk was attempted, it was a disaster.
Do let us know how that guided walk went! 🤞
I also would love to see your jewelry art!
Praying for you, tonight, that despite the steroids, you’ll sleep well. 🥱😴
“Even when I walk through the darkest valley, I will not be afraid, for you are close beside me.” Psalm 23:4a
I'm trying to figure out how to add links to see photos of my Christmas jeweled pieces. Anyone have an easy way to do that bc I'm having a brain fart?
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.
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!
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)) ❤