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.
OK, here's one - so, this was my 1st date with this online dating guy - we met at the restaurant and just sat down - there's two glasses of water on the table...so, he proceeds to dip an entire paper napkin all the way into the water glass - drenches the napkin and then starts washing his face at the table! I was just staring in disbelief! While wiping the wet napkin all over his face, parts of the napkin remained on his face, and so by the time he was done, he had all these little pieces of napkin stuck onto his forehead and in his mustache and beard...and one piece that was stuck above his lip, so every time he talked, the napkin would move up and down! I tried to tell him there were little napkins stuck all over his face, but he just kept talking over me, so I just left it like that! Aside from that, he was "Mr Wrong" anyway!
Lea, and just reading your message today, I, too, am filled with "happy tears" from such an amazing story about this ideal Marketplace chair that surfaced...I hope it brings you much comfort!!
I have had a zero gravity chair for ages now, and I got it when my back was OUT, and I mean out so bad that it was using a walker. I would not be without that chair and if it every crumps I would be "My kingdom for the chair". It has saved my back over and over and over, and is well worth the money I spent on it. Basically I am not at all a spender, and love junk shopping....can make myself a gorgeous terrarium by a trip to the junk store, up the hill for rocks from an old quarry site, and clippings off the plants of friends. So this chair I DID pop for, and was never so happy in all my life with something.
And your play it forward.
This thread is always full of so much love and beauty. It is a huge pleasure to read.
But the chair.........................Lordy.......................if anything could make me a believer..........................
What a happy story.
And you, Lea. I honestly don't know what to say. Here you are with MORE pain on that day, and what do you bring US? You bring us the most beautiful story.
I'm in a semi zero gravity position right now typing on my tablet. What a relief to take the pressure off of my back! Love it. My son confessed to Chuck this morning while shooting bird photos that he was taking to his sister about chipping in together to buy me one!
The rash is gone completely from my arms and legs but remains on my chest, not itchy etc. Good news. I'm TAKING this 2nd infusion on Thursday come HELL OR HIGH WATER SO that's that. 😉 Ain't no stupid side effects gonna stop me from my mission. I have to do whatever I can to extend my days here on earth.
Hope, how very classy of your date to wash his face from the water glass and handy "paper washcloth" the restaurant provided him with for that very purpose 🙄. I had a date once, yes once, with a fireman who was the definition of paranoid. There was a 30 min wait at Olive Garden and he'd ONLY wait w me in his truck in the parking lot. Where he proceeded to pull out a gun from the glove box and wave it around at anyone passing by the truck. I think I needed a Xanax by the end of that date from hell 😣
PB.......divine intervention 100%. Brought to mind finding the dime in the ER that day. Somehow, we're given what we need when we need it most.
I'm glad you all liked the chair story. I'm still gobsmacked myself. I listed the wing chair on marketplace for $40 so for spite, nobody is viewing it! 😑 I so want to give it away as a surprise. I even threw in a hand made wool throw!
oh, and to top it off...I forgot to mention that this glass of water that my online date was dipping his hand completely in with his napkin - that he later drank from it like nothing happened - hahahah!
Hope you're enjoying your day relaxing in your comfortable chair!!
I love this thread. LL1- ministering still!
I’m praying for your infusion, Thursday!
"The ways of right-living people glow with light; the longer they live, the brighter they shine."
Proverbs 4:18 (The Message)
Rise and shine, people! Thanks for shining on this forum, LL!
Thinking of you. Though we are dealing again with 21st century phobia and computer system glitches I am finding a way to connect with ethernet to come here and check on you, my first stop of the day.
I am hoping your appetite stays good with these treatments??? So you can keep up good strength for the inevitable side effect.
The good news yesterday was my labs: my liver function has increased dramatically from the labs taken 3 weeks ago before my first infusion! Thank God. I don't understand why I'm having such bad pain in my right side where the liver is all of a sudden, though? I'll ask the doc tomorrow who I get to meet with for 30 minutes before treatment.
Thanks Bandy. Yes, today is the one year anniversary of my mother's passing. My stepdaughter had 5 small teddy bears made out of her clothes for me, which was nice.
Geaton, you are very kind.
Hope, drinking the water after he "bathed in it" is gross. Imagine what his home looks like if he's washing his face at the dinner table of a restaurant! Probably has no running water or a hoard situation where the bathroom is unusable and filled with trash! 😣🙄
Thanks Colleen. I'm feeling a little anxiety about the IV tomorrow at 9, I'm not gonna lie. But I also want to hurry up and get the 2 pouches into my body so it's done!
My cousin and his wife showed up on my doorstep yesterday (just her, my cousin sat in his car which he backed into my driveway for a faster escape, I guess. 🙄 Chuck answered the door and Kathy refused to step inside! I wonder if they think cancer is contagious or something. It was very awkward. So I got up off my beloved recliner and went to see her standing outside on my stoop. She looked like she saw a ghost. I invited her in, she was again insistent on not coming in, but wanted to drop off a card and 2 gift certificates to the local Mexican restaurant we like. Which was nice and thoughtful. One from her and one from my other cousin. When I called them later to say thank you, they both said I love you which was a first. I think people get spooked at "cancer" and want to steer clear of it, lest it become a reality for THEM. I was happy for the gift cards but happier for the I love you's even more.
My new chair is truly a Godsend. I reclined in it all day yesterday and didn't need to go lie down until 730pm which is another small miracle.
People tend to look at miracles as huge things, which is rarely the case. If we look for the SMALL miracles that occur in everyday life, we can all find many. But most are too focused on HUGE events, allowing the SMALL miracles to go unnoticed and unrecognized. Open your eyes, ears and heart to all that transpires around you every day and I guarantee YOU will see lots of small miracles yourselves.
How glad I am of that chair for you. I so love mine.
I fully understand not looking forward AND looking forward to this infusion. I think the last helped you, but not without side effects. I, too wonder about this new pain.
I wish your appetite was better.
My thoughts with the cousin was perhaps thinking of covid prevention, not wanting to "give you something" by their visit? I know my kids are visiting now, and one thinks of them out and about all over the city and then in and out, and what are they carrying with them. That's a guess tho.
Glad the infusion in on the early side and you don't have to wait all day for it, Lea.
Love out to you woman.
It's not a miracle that I'm using a keyboard to type this up, but it IS a small miracle I'm not having too much pain TO use the keyboard.
I just want this #2 IV to be IN me and over with now! It feels like months since my last one, and days at the same time. Odd. I'm def not looking forward to the side effects, but they haven't brought me too far down yet, so press on, is my motto. I'll be back home by around 10 am and another one will be in the books. Phew.
Golden, thanks so much for your kind words.
- sending tons of love :)
Lord, we lift our friend before you. May the infusion do its job. May it have as few negative effects as possible. May it also work the way it was intended. Thank you for our friend, who shines her light here. May her life continue here, so that she may continue to serve your people. There are so many of us that appreciate the gift You have given us in her. Thank you, LORD. Really. Thank you.
Where 2 or 3 are gathered in HIS name, there HE will be!
and think, the more the merrier!
You got this Lea!
Amen and Amen!
I totally understand your feeling about wanting to and not. I have surgery coming up next week and feel exactly the same way.
And yes to the small things. I have had a few of those in the last few days and they have sustained me through a difficult time.
I wish I could send you a song… Mercies in Disguise, I think it is called. It is beautiful and almost makes me weep. (I also cherish it because when my kids were small they thought the words were “mousies” in disguise. Makes me smile through the tears:)
I often joke that illness and divorce are two things that can turn other people into bizzaros. I don’t know exactly why, but it sure makes life interesting, lol. Sorry you had such a weird visit, but glad they at least tried.
I always took that quote from Einstein to indicate awe at what was in front of him and a disappointment that people choose to look at this amazing life as underwhelming:)
Alva, so glad you had time with your daughter. I am sure she appreciates you… as do so many of us here on AC🥰
Good luck tomorrow!!
https://m.youtube.com/watch?v=ICnct8THNag
Scripture du jour is more light-hearted today...and it made me think of you ;-)
“Don’t waste your breath on fools, for they will despise the wisest advice.”
- Proverbs 23:9
And praying that you will feel Gods arms wrapped around you tightly as He walks through this with you.
I will leave you with one of my favorite Bible verses, Zephaniah 3:17..."The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing."
The thought of our Mighty God singing over us makes me teary eyed every time.
May God bless you and keep you.
What is a rainbow in the snow called?
The fact is that there are snowbows, the ice-crystal analog to rainbows. A snowbow is a fairly rare phenomenon that forms when sunlight is reflected and refracted by ice crystals in the air (just as a normal rainbow is produced by the reflection and refraction of sunlight by raindrops).
So......I took that "snowbow" as a good omen that I'd hear some good news today and I did. My liver function numbers are back to NORMAL! The doc said the immunotherapy is WORKING beautifully, killing off the active cancer ( and there was a LOT OF IT) inside my body! The fevers and rashes (now gone) are proof that my immune system is killing off the cancer, just as hoped for. Immunotherapy doesn't always work, but it IS in my case thank God. He said my diaphragm was hurting so badly bc my liver was so swollen. I guess it's shrunken back down since my diaphragm pain has subsided so much.
The oncologist also said the infusions do NOT accumulate and get worse, side effects wise. The side effects WILL come, its just a question of when, what and severity level. But not to expect things to worsen.
We feel very relieved overall and grateful to God that these treatments exist. And to my wonderful doc who's a fellow New Yorker and carried my red Coach purse and jacket into the infusion room FOR ME. I told him how red suited him, and he reminded me how he was properly coached by his New York female family members on how to carry pocketbooks and coats for women 😂🤣😁😃
Thank you to everyone for bolstering my spirits when I read all your comments this morning. The Yervoy and Obdiva bags have arrived, let round 2 begin!
The snow rainbow sounds absolutely amazing!