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.
Yay!
I remember when I first hurt my foot and for weeks afterward I couldn't put any weight on my foot. Showers were really hard. In retrospect I don't know why I didn't get one of those shower chairs. No, I balanced on one foot in the shower, teetering and tottering away. When I was finished I would feel like I'd just been in the ring with Mike Tyson. It's amazing the muscles you use when trying not to use other ones. So I sort of relate to how you have felt.
But I'm glad your dizziness is down to a 6. Let's get it down to nothing shall we? All our lips to God's ear.
And, for not collapsing after a shower! Yippee!
Hope you sleep well!
I'm continuing to keep you lifted up before His throne.
Down to 25mg of poison now, 20mg this Saturday. I realize tomorrow can be another chit show, but I'll take today as a WIN.
Me, I do not like Gatorade.
I just read online that if you are properly hydrated it will taste salty. If you are dehydrated it won’t taste salty. Interesting…
"POWERADE ION4 contains four electrolytes – Sodium, Potassium, Calcium and Magnesium – lost in sweat. Sodium and Potassium help you to retain fluid so you stay hydrated, as well as maintaining your blood volume, sweat rate and muscle blood flow."
Sendhelp, it would be nice if I could walk and be outside in the sun TO be in need of hydration. The Powerade was another useless suggestion to hydrate my already hydrated self by my DD the RN.
Geaton.....living to 104 or 106 like Goldens mother sounds horrible to me 😐. I remember reading about Goldens mom years ago when I first came to A.C. thinking omg, I'll die myself if my mother lives that long!
Golden, honesty, I do not expect to EVER get back to 100%. Those days are gone now I think. I'm not unrealistic. I'd like to be functional again and not bedbound or chairbound, though. Idk if that'll happen.
I have another IVIG scheduled for the 27th which is the 8 yr anniversary of dads passing. Maybe that's a good sign. Or, a sign of another dead end since the first 2 did bupkis. 🙄
Yesterday, not ONE of Chucks 5 kids contacted him in ANY WAY for Father's Day! Not even a text or Facebook message! How disgusting is that? A man who broke his back for them ( and still does) his whole life to be ignored on FD? They have no problem calling him for hours with THEIR PROBLEMS, or asking for money or whatever, though. The one estranged daughter who lives in Colo and pretended to call him in early May didn't contact him yesterday either, which imo hammered the final nail in that coffin. She made a loud statement and he heard it. My DD came by with gifts and to pay her respects, bc she genuinely loves the man who raised her since she was 11. I was glad she did, and very sad for him yesterday. If he was some NPD dude we read about here, that'd be a different story. But he's more like Ward Cleaver.
Thank you all for the kind words, I appreciate ALL OF THEM.
When my sister was fighting (and won) her battle with cancer, she recommended Liquid I.V. Hydration Multiplier, an electrolyte drink mix.
I never acted on her advice, was confused, and could not find it. It is packets of powder, not liquid in a bottle.
We only recently tried the tiny stick packet, using only 1/2 powder added to water. The water tastes really good! Faster hydration than water, if you have been outside in the sun and depleted your electrolytes. You can carry it in your purse and add it to your water.
As always, people should do their own research, and consider their b/p and diabetic needs.
Feel better soon Lea! Wanting a better day for you!
Hope you’re feeling a bit better today.
Sounds fun! LOL 😆 Forgive my sarcasm.
What an accurate description, “Heaven’s Waiting Room!”
Don’t know if you are a Seinfeld fan or not, but I love his joke about his parents moving to FL after retiring. “My parents didn’t want to move to Florida but they turned 60 and that’s the law.”
Just my opinion, so if Lea is not a "salt" person she may find it salty.
Prayers as usual for healing and well being. I know God hears us but I don't know His timing. ((((((hugs)))))
All of us have our own challenges throughout our lives.
Some of us have extreme challenges that we face, such as in your case. We do what we can and as you say, the rest is in God’s hands.
I remember telling an older woman once that I was praying for patience. She said to me, “Oh honey, never pray for patience. Pray for wisdom instead!” I have tried to remember her words.
So many times we become thoroughly confused when we are going through a difficult situation.
After the dust settles, sometimes we see things that we missed. Hindsight is 20/20.
Also, praying for you on Sunday evening.
You’re treasured ‘round here! 🩷
As you say, nothing has helped. It's so ironic that you are NRD for the cancer and your back has healed, and yet you are suffering from the effects of the treatments, but I guess that is not unheard of. DD's last chemo knocked her for a loop and she still hasn't gotten back to where she was before she had it, and there is at least one more coming in a few months. But she is nothing like as bad as you are - just very tired and some what wobbly at times.
Hope you have a decent visit with your dd. Oh I just read about the antidepressants. 😓
I firmly believe that we know our bodies best and usually know what's best for us. I haven't been 100% right but mostly. This not a comment on whether or not you are right - just my own experience. I think it is important that we have a say in our own treatment,
Is it any relief to have decided that you will take no more cancer treatments? That's a big decision.
I believe in being persistent in prayer so I continue to pray for healing and a better life for you and for God to wrap His arms around you and give you comfort. Yes. it always has been in His hands.
My husband said it does if you already have enough sodium in your system but i think he's lying.
I think he added extra salt to it because he was working in the heat and sweating a lot.
Sp, Powerade w or w/o sugar does absolutely nothing to help me feel better or worse, same as everything else. Today's recommendation from DD was "antidepressants " to which I said, "there are some things no pill on earth can fix. This is one of those instances." I understand the need to fix, and loved ones should understand there IS NO FIXING this, so, like you said, just listen and be silent.
It seems like forever that you have been feeling rotten. I hope that in some small way, the comforting words from others helps to see you through all of this.
How many times have many of us occasionally said to God, in our own individual circumstances, “Please God, stop testing me. Can’t you see how much I am struggling with everything? Haven’t I proved to you how much faith I have?”
Or as my sweet MIL occasionally would say to God, “God, are you listening to me in my pain? It was completely normal for her to become so irritated when she was going through her cancer treatments and the withdrawals afterwards.
Her mother drove her completely insane throughout the process, going as far as telling everyone that she was faking her cancer and discomfort! She treated her only child like crap.
I remember going to the hospital and seeing my MIL asleep and starting to walk away. She hadn’t been sleeping, but was pretending to be sleeping so she didn’t have to speak to her crazy mother.
She would call my name and say, “Don’t leave! I’m thrilled to see you. I was avoiding my mom by pretending to be asleep. She did whatever she needed to do to avoid her narcissistic mother.
Lots of people say that things happen when they are supposed to. Personally, I struggle with the idea of people continuously suffering. I don’t see where there is value in suffering for so long. Everyone has a breaking point. Lord knows, you are a strong woman and we will be praying for you that your tour of nausea duty will be over soon!
Offering prayers and sending much love and hugs your way.