
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.
Sp, I like that song Titanium. I also told my son I felt like saying eff it all the other day just to hear how I have no business saying that. Oh no? Hey bud. Try being in my shoes sometime and THEN we'll talk about who has rights to say what 😑. Nobody should attempt to mute a person from speaking their truth in a family situation bc it's "unpleasant " to hear it.
Golden, I've seen NO IMPROVEMENT AT ALL from that IVIG, nope. And if I hear IT TAKES TIME once more, my chins will truly explode. Btw, to add insult to injury, none of my 16" necklaces fit around my neck now so I'm forced to wear the long ones. The evil wicked prednisone taper is down to 70mg till Sat when it drops to 60. I did find Quaker oatmeal CURED MY GERD so if whoever is struggling w such an issue, give it a try. I eat 1 serving of the swill for breakfast and I guess it acts like a sponge in my stomach, but no more TUMS, Pepto B or liquid antacid ever since, which is miraculous.
It is a good sign that you are only on ibuprofen now for the pain and not having to take stronger stuff for your back. Wishing you more healing in the coming days and weeks for your back and goid news for your pet scan on Thursday.
On the other hand your back rebuilding reminded me of the song Titanium. This could be your anthem when you want to say f--k it to everything.
https://m.youtube.com/watch?v=KxnpFKZowcs
The wreath is beautifullllll and so very sparkly. I mean who doesn't like a super sparkly wreath? And if there is a person, well...just ignore them. They ain't right.
Wait 8 bags of food and they left you cheese and crackers? Hope it was some fancy shmancy cheese and amazing crackers. Beyond that all I can say that's just a shame! And for good dose, add it in Italian (una vergogna) and Yiddish (a shanda). Yeah, just showing off here.
Good luck with the PET. Hope it shows only good things. And give some thought to the treatment offered. Although maybe you want to give yourself a couple of weeks before plunging into another round?????? IDK, just a thought.
Take care!!!
Glad to see you are back!
Wonderful jewelry on the wreath!
Just beautiful.
Your wreath is beautiful! Thanks for uploading the photo so we could see your lovely work.
Prayers for wisdom re the IVIG. As far as you are aware did the last rounds benefit you at all?
The stepdaughter and family are beyond understanding! Oh my goodness!
Looking forward to seeing you and Chuck in your lovely avatar again.
So glad you're back!
Send, you all are not doing anything "to" me except allowing me to vent, to listen to me, to give me support, etc. "Immature children" would be the last words I'd use to describe what you've all represented to me the past few months. 😍
I've been able to read ALL the ongoing comments the past week, just not comment myself or log on or "like" anything. Your words have resonated with me and shored me up. SP, you never fail to make me laugh, especially when I need to most. Ty for that. Ty to Geaton and to everyone who's asked about me. I appreciate it. Riverdale, love you girlfriend 😘
Send, a deaf frog is fortunate in many ways but a hearing person in this world winds up inundated with information at every turn, some good, some bad, all mind boggling in terms of incurable cancer. I wound up spending too much time on my Stage 4 Melanoma FB group this week which is a depressing place, to say the least. More memorials get posted there than anything else 😣 Which is why the support here is so good for me.....its uplifting and positive.
The spine surgery was more than I'd anticipated. First from a general anesthesia standpoint bc it was represented to me as moderate sedation. The concern was me waking up during the burning/ablation of the tumor (9 minutes at high temp) process, flinching, and wrecking the procedure entirely. So general it was. It took 2.5 hours and required cementing 2 vertebrae and installing a jack, like a tiny car jack, at the base of the collapsed bones to act like scaffolding. Once the jack was cranked up, it would hold my spine up. The jack is made of titanium. The pain afterward was significant actually, worse than anticipated. Today is one week ago the surgery took place and I'm only taking ibuprofen.
But now I have back pain to add to dizziness which has not abated at all. The chaos continues, unfortunately. UC Health wants to do another IVIG round in 2 weeks but idk. That's 3 days @ 3 -4 hrs EACH visit just in IV time, so I'll think about it.
Thursday is my PET scan which will determine what comes next in terms of treatment or if I'm in remission etc. I'm nervous, to put it mildly.
The stepdaughter and family is in town and showed up yesterday while I was in bed in a nightgown and Chuck was at the laundromat washing a king size comforter Honey puked all over. 😑 He called and I said OH That's Nice I Hope Honey Can Answer The Door Because I Can't. They waited till he got home, brought in 8 bags of groceries and put them on the kitchen counter (supposedly cheese and crackers for our dinner), stayed 2 hours and proceeded to take those bags WITH them when they left! 😂🤣😃 Can't make this stuff up, folks! They plan to surprise us AGAIN either today or tomorrow with another visit, too, yay!
Anyway, I will post all this gibberish before I lose it and see about getting my avatar back.
PS: I've uploaded a photo of my Christmas vintage jewelry wreath for my avatar until I can use my desktop again. It's made w a Styrofoam base, coated, painted gold, and pinned and glued w jewels.
Hoping you are recovering from the back surgery with no complications and that in some way it has helped your QOL.
Looking forward to seeing you back here soon. ((((((hugs)))))
Take some deep breaths.
I know it's hard when you are healing to be put under pressure to answer to your peeps and others following you.
We are not immature children who should be pressuring you, or making demands on the forum admins, or jumping to conclusions about what is happening to you or the website.
Respect for your privacy at this time, and continued prayers for you and Chuck.
Feel free Lea!
Lea,
We truly miss you. 💗
“Throw glitter in today’s face.”
“Throw some glitter, make it rain.” (this for us who so badly need rain)
“Less bitter more glitter.” – Meghan Rhodes
Praying for you always...
“But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.
Malachi 4:2
I'm sure we could all do with a good frolic right about now - with bells and sparkles on! 🔔✨
Good for your Sil!
No one should bother with the naysayers.
She was called into the guidance councelor's office and told she should not apply to any colleges, she just didn't have the grades. She went home and told her Mom what the counselor said and her Mom told her not to listen to the counselor. SIL applied and got in. She taught locally and later in private schools in the South where they moved to. She was well loved by her students and won awards. TG she didn't listen to that counsellor.
Many hugs sent your way!