
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.
If we ALL report PatPaul's comments I am thinking we can warn our admins that this person should be considered for removal from AC.
We have no way to block people on threads we create.
This invasion of Lea's thread is purely abusive imho and the work of an individual, sadly in need of help no one here can provide.
It was apparently a miscommunication, can't we just let it go instead of going nazi with it and everyone turning on someone that thought they could say something that hit wrong? I know I have been in those shoes, so have you.
I mean really. I thought we were all here to support Lealonnie in her journey, and pray for her healing.
Let's stop the BS and get back to what this thread is intended for. If you don't like what someone wrote just ignore it and move on.
Patpaul, according to my search, your first reply was back on March 10th under the name Patpaul. If you had a previous ID then what was it, or better who is ur wife? I don't trust anyone who does not allow others to see their "followings". I feel they are hiding something and are Trolling. If u can't be supportive, then stop posting on this thread.
Please don't comment on this thread. Just my thoughts, take it or leave it.
(Don't get excited, hee hee--I mean out of this thread only, and Discussoins in general.
I will meet Lea at our private clubhouse instead).
I am great with that, as of late I can't read the posts of others here anyway.
I love AC and our OPs questions; they are what I was always here for.
(By the way, is a girl. And a jealous one, as well. I will leave you to digest that one and wish all of you well.)
Lea, see you later.
I am so sorry, but my atheism appears to have wakened the witch-burners and they have used that to turn your BEAUTIFUL thread into an abomination.
I hope they are on their knees to their God, and that he forgives them.
We, also, didn't read anything offensive and I think that is because your husband was just speaking the truth. As we all know, the truth can chafe.
Have a restful evening and night.
Think only of good things.
How pleased Chuck must be that you are improving overall!
It is pretty courageous to get up and help out, clean stuff, and send him out for the day. That must have taken some extra effort!
Just a suggestion…
Sometimes, when I am having a bad day because someone says mean things or does something to upset me. I get angry and allow it to keep replaying in my head which then keeps the anger going. Then I catch myself. Why should I let that nobody control my thoughts and my feelings. Instead of thinking about what that nobody did to me, I should think about all the kind and thoughtful things that others have done for me. Then I do just that. I start thinking about the good things, one after another, which leaves no room for me to think about the bad things.
Many of us care about you. Sometimes, someone says the wrong things, or the right things the wrong way. Don’t let those things take up any space in your mind. They are just meaningless chatter.
Good night Lea.
For Lea to post her cancer journey and for us to support her with that.
Quoting an old song from the 60s when I was Roman Catholic: "It's a new day, think new thoughts."
I hope you can enjoy a new day and leave "yesterday's sorrows behind." (Whoa, another RC song from the 60s, lol.) Had to go look up the entire verse and it seems fitting (author is Jack Miffleton): "But then comes the morning. Yesterday’s sorrows behind. Wake it’s the day of your longing. Life returns, mercy comes, it’s morning.”
Have a good day, Lea. And if / when you are awake at night, the Lyrids meteor shower is happening now. Maybe you can slip outside for a bit and look to the skies with hopes of catching a few if it is a cloudless night.
You have a sister in dizziness and the wobblies in my dd. She had one of a session of chemos last week which are given 6 months apart. Now we know why. She told me that the other day she landed - albeit gracefully - on her bum on the kitchen floor. Do they call that a prat fall???
This too will pass! Hope your day goes well. (((((hugs)))))
I’m so sorry that your dizziness has increased with the titration.
You are treasured here.
Being vulnerable on a public forum opens me up to judgment, period. People will use any reason to lash out or to get THEIR message across, regardless. It happens, I know that. If I didn't have the cajones to endure it, or to speak my own mind, then I shouldn't have started this thread to begin with.
Pecan, please don't worry about me or apologize for something you weren't involved in. Your dh "forgave" me, for whatever reason, and said his peace, we are done with the matter.
Sp, yes, thank you. You seem to echo the voice of reason around here, even though, like me, you don't sugar coat your words. Not everyone can bear such a thing, though, huh?
PB, the support in general I've gotten here has been incredible and it's seen me thru some very rough days. What's taking up space in my mind is withdrawal from prednisone and how incapacitated I am right now, mind blowingly so, and will I EVER get back to normal? I have bigger things to dwell on than getting my feathers ruffled by a comment.
Golden, I'm not sure WHAT will "pass" here in my case, but I sure hope you're right. I'm sorry your DD is enduring such chaos herself.
Tomorrow is my 2nd opinion at UC Health in the early afternoon. I hope I can make it there in 1 piece and the doc has SOME light to shed on this chaos w steroids, dosing, withdrawal etc.
I'll post here after that appointment and continue to rest today.
It’s so tiring going back and forth to the doctor and hospital. I know that you will be relieved when you can ease up on going so often.
I think the prayerful, God driven thoughts on here are one of the things that have made this thread such a peaceful place to come and support our friend Lea. No reason for it to stop I think as it had nothing to do with the little hiccup from yesterday.
Best of hopes for tomorrow.
God tells us, "I will never leave you nor forsake you" Deuteronomy 31:6-8.
What will pass? I believe the effects of coming off the prednisone will pass and you will be able to look into the mirror and see your own sweet face again. 😊