
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.
Great news! 😊
Glad that you were able to rest a bit too.
"Serena had moussed her hair so it stood on end. Streaks of orange glitter shot from her temples into her hair. She wore a yellow tulle skirt over a sheer, clingy red dress and looked like a walking flame.”
― Lynne Ewing, Goddess of the Night
“I may only be four foot, eight inches, but all the more reason I've got to stand by every one of them. Now, where's my glitter?”
― Lisa Jenn Bigelow,
“...Just to clarify, beautiful like a unicorn bathed in glitter?”
― Emiko Jean
“A bitter experience can embitter and deter a quitter but not same for a fighter who’s determined to litter the narrative with glitter.”
― Vincent Okay Nwachukwu
These are all you, Lea - a walking flame, "Now where's my glitter", beautiful like a unicorn bathed in glitter, a fighter...
Hope you are sleeping still and recovering from yesterday, which must have been an ordeal, and that the ivig is blessing you.
Prayers for peace and healing and love always
I think the IVIG is all that's on schedule today, I hope, and test results. DD and Chuck will be by to visit later. Snow is forecasted all week 🙄
Snoopy, Love After Lockup was a DOOZIE last night and a few nurses were sucked into all the hootin & hollerin blasting from the tv set 😆😎. Schlock tv is my favorite. And I saw a few episodes of Diners Drive Ins And Dives which always makes me hungry, darn you Guy Fieri.
Love the glitter quotes Golden. Yesterday was def an ordeal but I'm no quitter. And I did bring along a pair of sterling dangling earrings....j/s
Ty for faithfully posting the scripture du jour Geaton.
So glad you were able to get some quality sleep, finally!
Lumbar puncture fluid shows brain and cord inflammation but no infection like meningitis. Other tests take a few days to come in but preliminary tests are in.
Spinal MRIs not read yet.
Steroids now INCREASED to 90 for the near future till I'm feeling better 😑
Looks like the original hypothesis still holds true......audiovestibular toxicity reaction to Yervoy infusion. Nobody can say whether this is permanent or not, but we're all going with temporary. No vertigo drugs work bc it's not true "vertigo" happening here.
Exemplary care here at UC Health with a very thoughtful team of neurologists looking at my case carefully, thank God.
I stay here for 2 more IVIG treatments over 2 days and then home. That's the plan.
Great news that you’re feeling a little bit better! 😭😭
Praising God that they are treating you well!
Keeping up the prayers, here!
Hoping all goes smoothly and as planned. Being in the hospital is necessary but I know that you will be ready to go home soon.
Sending all my love to you today and always.
Things seem to be going in a positive direction for you. I'm so glad.
Many more tests were conducted today and findings were made, not all positive. Test results are still pending including a CT scan today to determine possible spinal surgery. We know little right now. An ENT is coming in to talk about the possibility of a rare condition this may be...again, idk.
The 2nd IVIG treatment was administered today w/o an issue. I hope to feel better by Monday.
I can't say how fantastic this team of medical pros has been here at UC Health. I'm grateful to be here. Concerned about "Test results" but it's all in God's hands.
I certainly wish all the best for you! Waiting for test results can be unnerving to say the least. I truly admire your faith. I agree, that it is all in God’s hands. I’m going to say extra prayers for you and your family tonight.
Sounds like you are getting great care and have confidence in the staff where you are. That is a blessing.
Praying tonight for good test results, good chat with the ENT, and resolutions for the conditions you have.
Happy you have your sterling dangling earrings with you! A little bling helps.✨ I know many of us here wish we could just take all this trouble away from you. ((((((hugs)))))
The last IVIG is scheduled gor today. No idea of release. Doc said he thinks i should feel better (dizzy wise) tomorrow. His lips to God's ears bc I am ready for a break here.
It certainly was the hand of God that brought you to this hospital and these doctors. God knows just what we need and just when we need it, and it sounds like as always, His timing was perfect in your cancer journey.
I continue to pray for you and Chuck daily, and know(like Geaton777 said)that God has you in the palms of His hands.
But you must be exhausted from all these issues. You are a very resilient person, one of the most resilient, but you do need a break. Praying for a break, for some good news, for some unexpected benefit that will lift your spirits.
Thank you, Lord for Lea, and the good care she is receiving. Bless her, Lord with ease of mind and body. Guide those who care for her and are working to heal her. Refresh her spirit and give her peace and comfort, in Jesus name.
Sending hugs and love. You are some fierce woman!!!! 💃
I’m so sorry about your back issues. My gosh, that is so awful.
I just said a special prayer for every inch of your body to be restored to wellness.
Sending all my love to you.
And for those of you who don't know what amen means, it means "so be it."
PB, the pain now is so much better in my thoracic spine. What irks the snot out of me is the lack of looking into this the other hospital did and Dr C too. Knowing the severity/size of the bone tumor, and that it was deteriorating with immunotherapy......what happens next w the spine/bone structure???? Hello? 😑
N HWM, ty 😍
Golden, fierce eh? Idk about that. I keep thinking about falling in my closet last week and how that could have turned out. 😑
I've had 2 IVs go bad now and swell up the tissues in my arms. So they had to put one in my upper arm in a large vein just now which we hope will hold for this last IVIG infusion. Still waiting to hear the surgical plan moving forward which I suspect will not happen here at UC Health but at Kaiser instead.
Your daughter sounds like one smart cookie! You taught her well. 😊