
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.
When we see a loved one suffering it's natural to want to try and fix it (that's where the have you tried this is or don't do that advice comes in) when all said loved one needs is someone to just listen and comeserate with.
Geaton, my plan is to wean off prednisone 100%, even if it kills me. Literally. Btw, I am about 4 weeks away from being totally off, 5 weeks max. Not so close at all. Seems like a very long way off, actually.
DD is coming by later to say Happy Fathers Day to Chuck and no doubt tell me what I'm Doing Wrong with my recovery, which has nothing to DO with what I'm Doing. Sigh. It's always fun to hear her tell me to drink Powerade w/o sugar oops I mean WITH sugar or to take Unisom or Benadryl to sleep or for my eye issues, or that the NEXT IVIG will work, regardless that NOTHING HAS WORKED to relieve my symptoms over the past 15+ weeks, including but not limited to, the last 2 amazing IVIG infusions at $20k apiece.
$647,000.00 in treatments so far but I'm cancer free for the moment and have had a successful spinal repair surgery, so that's something. The vast majority of that expense has gone towards fixing this toxic reaction my body is having to immunotherapy treatment 2 and has been unsuccessful. 😑
I hope you all have a nice Sunday and a Happy Fathers Day to those who are celebrating
Lord, please give Lea wisdom as she deals with her condition, Help her to make the right decisions regarding the prednisone, and the tapering. Lord, you know the path you have planned for. Show her the way - step by step, We give you all the glory for her NED. in Jesus mighty name.
Are you noticing any benefits from the lower doses? - losing a bit of an extra chin maybe?
Your courage and honesty are ongoing and amazing.
Amen and Amen to the prayers of others.
For me when I'm suffering I don't have the patience of Job. I admire you Lea and that you still come on here everyday reporting back to us all.
Please God, give Lea some relief and in the meantime while she waits give her peace to withstand the waiting. In Jesus name, Amen.
Thank you all for the prayers, they mean a lot. And cxmoody and RD, ty.
Golden, if the prednisone did me any good and I can't get off of it, then what "good" did it do, ultimately, since it's causing so much damage to my body? Can't stay on this chit forever. Truth I've been thinking about myself lately. DD is saying TRY TAKING MORE and I'm LIKE WHAT FOR??? I'm either getting off this chit or I'm not. I have to see what it feels like to STOP POISONING MY BODY. If I wind up dead or back in the hospital as a result, so be it. If I have a heart attack, then it was my day to die. Fate and all that. At this point, I'm not sure it matters.
Okay, I might just even get a little teary, sometimes!
☀️
I just hate that you're having so many issues with the dizziness and weaning off of the prednisone. We all want you to be able to enjoy this gift of a second chance that you've been given.
The Bible teaches that we have great authority over all things and that we will do even greater things than Jesus did, so in the mighty name of Jesus and the God of the universe, I rebuke your dizziness and any lingering side effects that are stopping you from living and enjoying your best life, and claim that by Jesus' stripes you are healed completely. Thank you Jesus!
And all Gods people said Amen and Amen(so be it)!
"I have a magpie mind. I like anything that glitters."
-Roy Thomson, 'First Baron Of Thomson Of Fleet'.
"I am never afraid of using bold colours or glitter or intense lipstick."
-Charlotte Casiraghi.
"I have been really inspired by Paris Hilton, small dogs, and a glitter, luxe lifestyle."
-Charlie XCX.
Lovely prayer. I will join you in saying, Amen!
We come together this Friday night, on behalf of our precious friend.
We are so thankful that she is still with us.
Your word says in Genesis 16 that You are The God Who Sees. We know that you see her suffering. You spared her life. Now, we ask you to let her PARTICIPATE in life, as well.
Calm her body, please, Lord, and give her relief from the dizziness. Please hear our prayer.
Amen.
Just checking in to say I'm alive.
The gaslighting and stories! Oh yes, to them too!
Prayers for your general health and well being so you can go to estate sales!!!!
Lea deserves every dime that has been produced to spend on any pleasurable thing that she wants!
I love hearing about the dimes and I love hearing about her precious grandson!
I was going to switch it back to my purple orchids from our botanical garden or a photo of my sweet granddog.
I decided to keep the dime avatar for now to remind me to pray for Lea’s nausea to be gone.
I'm reading your discussion of whacked moms and knowing I could contribute - but, for my mental health, I just can't go there! 🤪 You are not alone, unfortunately.
Think about you often Lea. Prayers every day❤️
I was embarrassed by my first dime photo. LOL 😆
I took a better picture.
If your dizziness continues you will be a contender for the Guinness Book of World Records for being dizzy the longest of anyone!
Geaton, hothouse, Golden, passive-aggressive people are the worst, omg. I used to keep a marble book of my mothers outrageous shenanigans so when the men in the white coats came to take her away, I'd give them the book so they'd have notes to go by for treatment. True story. Except nobody ever came to take her away and the nightmare continued to unfold at home. Where she'd threaten to kill herself by driving off in the car burning rubber, leaving me at 5 years old alone at home w grandma, crying and shaking w fear. All unhinged crazy behaviors no child should ever be exposed to. All based on her "nerves" over having her mother living w us. The walking on eggshells was a real necessity bc the rages she'd fly into were very real if I set her off! Her rages were teeth baring and very ugly things. Once she threw all the pots and pans down the basement stairs and hammered them up into blobs! 😑
I wasn't allowed any privacy either....not allowed to close my own bedroom door even! Everything was subject to search bc I was scrutinized and not trusted. I was accused of doing things I didn't even COMPREHEND at a young age! Being adopted helped me....step AWAY from the genetic component, at least. To tell myself I was not "related" to these people by blood. That I would not turn out like mom, etc. That maybe I came from great stock. When I found my biological family and they turned out to be dumpster divers from the Jerry Springer show, I nearly had a nervous breakdown. Sigh. While I was unlucky to be adopted into the family I went into, I would've been unluckier to have been kept by my biological mother who was even more unhinged than my adoptive mother, I think. She died at 57, before I got to meet her. Which may or may not have been a good thing, Idk. I do know you can't make this chit up. I am 1 of 7 children she had w at least 3 men. The result of an affair she had while her dh was in jail 🙄.
The dizzy days are nothing new, ladies. Been going on for what seems like forever now. 15 weeks today. The side effects from poisonous immunotherapy treatments are numerous and widespread, which I didn't realize when I first started. I had no other choice though, so here I am. Dealing w the fallout, one day at a time. Ty for all the love and support.
The description you gave of your relationship with your mother mirror mine very closely. The silent treatments that were days long were particularly awful. Given the choice I preferred the hair pulling and beatings, at least it was over quickly. . And I remember how my sisters and I walked on egg shells for fear of setting her off, that was memorable too.
She treated my father the same way and for the life of me I could never figure out why he stayed in the marriage. Most men would not have. I’m glad he’s now in a nursing home and doesn’t have to listen to her tirades anymore. At least he has some peace in his final days..
I was lucky, I built a good life for myself and have a good marriage, wonderful daughter and awesome grandkids. I tried very hard to be aware of my mothers behaviors and not fall into her abusive patterns. Was always afraid Id be just like her.
I agree they can't have normal relationships. They are not capable. As a child, I don't remember a hug or a kind word from my mother.
They chew you up and spit you out, then blame you when they step in it. They are never wrong, it's always someone else's fault.
For me, I had to forgive regularly for my own sake.
It's funny you mention "Keeping up Appearances". My kids always said mother was like Hyacinthe. It was all about how things looked and what people thought of her.
I am so sorry that you went through all that. As an adoptee you must have wished they hadn't and wondered what life would have been like if you hadn't been given up for adoption or if you had been adopted by another family. (((((hugs))))
I have a sibling - she has similar traits to my mother and knew how to set mother off on me so having a sibling in my case made things worse.
So sorry you are having very bad dizzy days. Keeping praying for improvement and for you to have some "normal" life and be able to get back to your estate sales and buy some glitter!!! ✨🎇✨
Dear Heavenly Father, please lift this dizziness from Lea. Thank you, God. Amen.
I think of you every time I see a dime and wanted to send you a dime all the way from New Orleans!
I know that the most special dimes are sent from your dad in heaven but I hope that this one might bring a smile to your face.
Hoping all of your dizziness goes away very soon and you feel like yourself again. Sending hugs and love your way!
After you see it, I will change my avatar. I’m afraid that my photo of the dime isn’t the best! LOL 😆
Maybe another poster will take a better looking photo of a dime and send it to you.
We could flood you with dimes! 😊