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.
Graygrammie: The vestibular system helps provide the brain with information about your movement, positioning, and where you are in space. My brain is misfiring these signals, I'm told. The symptoms of a vestibular balance disorder include:
Dizziness.
Feeling off-balance.
Feeling as if you are floating or as if the world is spinning. (Drunk for me)
Blurred vision (and floaters, still)
Disorientation.
Falling or stumbling.
Hearing loss, tinnitus
I also have swollen eyes and eye issues bc all those systems are interconnected. Blurry vision prevents me using my desktop or seeing in the mirror (Which is not all bad at this point). My head feels disconnected from my neck....like a bobble head which requires me to lay my head down or rest it against something most of the day. Can't shower w/o a walker, go up and down stairs, or do much of anything else in general. Imagine trying to do anything after drinking a gallon of moonshine, which is how I feel 24/7. Riding in the car is an ordeal requiring me to lean the seat back to rest my head, too. Bumps and ruts in the road cause nausea.
Plus I'm hyper sensitive to noises of any kind, light, odors and stimuli in general. The startle reflex is ramped up so I wear earplugs in the house, but it comes and goes. The ringing in my ears is a constant high pitched drone. The combination of symptoms makes for a very disabling situation which social security classifies as a disability that they pay SSDI for.
Never heard of a Rife machine but I'm sure it'll be recommended soon.
Cxmoody, isn't parasthesia similar to neuropathy? No fun there, that's for sure. My neuropathy in hands and feet is pretty mild (also from immunotherapy) fortunately, and also seems to come and go. Sometimes it feels like there's a buzzer on my toes....other times pins and needles, other times nothing.
Lea, I did an update about my ongoing foot and ankle problems on General Topics thread if you are interested. I'd rather not type it all out again. It just depresses me.
Maybe, my foot problem is all in my mind? I'm talking to the orthopedic doc again on Friday. Last time I saw her, her last words to me were "Go get em!" My DH thought it was funny. It just riled me up. Maybe she'll tell me on Friday to talk to a counselor. She better not or I might lose it.
PS: go check your PMs
And we do too.
Thurs morning is the IVIG infusion at Kaiser which lasts 4 hours, not including pharmacy prep time, IV prep time, lab time, etc,,,,,so all day basically. I hope this one kicks in and brings some relief.
My grandson came over for 2 hours yesterday while dad took mom to a medical procedure. She insisted on saying bye bye to him (2 years old) repeatedly so he refused to leave the foyer of our house for most of the time! We have a little window next to the front door he wanted to look out of, while playing with my Willow Tree angels, and only managed to break 2 of them in the process. Grandpa sux as a babysitter, did I mention that? 😂 But he did manage to lure him into the living room with a tub of watermelon and no napkins! Oh and M&Ms that DO melt in your hand after all. Who knew? All the moms and grandma's on earth, that's who! Ha. As soon as mom and dad came back, the little guy said ALL DONE BYE BYE UP and laughed. Lol. He was ready to go to Tokoyo Joe's and have a Bento Box with edamame. His tastes are apparently refined away from chicken nuggets and chocolate milk to soybeans and San Pellegrino sparkling water 🙄 Anyway, times have changed since we were raising kids, that's for sure, but the cuteness overload hasn't changed one bit! I told them to drop g/s off anytime they need a lunch date all to themselves.
My four year old sweetheart and I collided on Sunday, when he ran across the playground, yelling my name, and running into my legs. And my feet. And my right big toe didn't make it out of the fray unscathed.
Off to Urgent Care I went, yesterday. Fractured!
I shall be wearing a Surgical Shoe for the next four weeks.
Worth it?
Oh, yes!
He will be sixteen some day, and NOT running across the playground towards me, yelling, "DeeDee! DeeDee!"
Music to my ears!
Me too. I love hearing about everyone’s grandchildren. I don’t have grandchildren but everyone who has them says how special of a relationship it is. My friends say that it’s very different from raising our own children. It’s fun to spend time with them without the responsibilities of being the parent!
Lea - a big BIG high five from my dd about your NED results. She was so excited for you. She knows better than I what that means. (((((hugs)))))
"It's not my fault. when I was a baby, I was dropped in a pile of pink glitter, and I've been really sparkly ever since."
Works for me!! Now where are my earrings?
I go to most of his gigs that I can…
Feel better
LL, I'm praying for you right now. May God delight you in some way, today!
Geaton, I too am grateful for the sweet and sustaining friendships that have been cultivated on this thread! Amen. 😁 I look forward to coming here often to read the uplifting posts. They buoy my spirits.
Chuck is at the doctors office right now and I have a pit in my stomach. He's been having a lot of pain where his shoulder meets the first rib. We're hoping it's from too much photography and lugging around a heavy camera (but wrong arm for that). But history shows every time he's had odd pain, it's something awful. Last time he had a shoulder pain it was liver cancer. I am seriously praying to God for a break in these health crises we've been going thru non stop since 2019.
I'll update later once he's back and there's GOOD news to share. Then I have to go give blood for my IVIG infusion tomorrow.....our new hobby: doctors office appointments 🙄
“Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.” Philippians 4:8
One of my favourite bible verses. Think on good things. Praising God for His mercy!
"For the LORD is good; His mercy endures forever, and His faithfulness to all generations." Psalm 100:5
Happy to hear that Chuck is doing okay with the exception of arthritis.
Does everyone eventually end up having arthritis? Just curious.
My aunt had rheumatoid arthritis. I remember her hands being horribly affected by it. She lived in pain.
RA is an autoimmune disorder and entirely different than osteoarthritis
That’s interesting.
My aunt was in her 30’s with RA. When I was a child, I remember wondering why her fingers were permanently bent.
She stayed as active as she could. She was like my mom and grandma. She was an incredible cook and seamstress.
She struggled with ironing and my uncle told her to hire someone to do the ironing.
I remember my aunt telling my mom that it was worth paying 50 cents for each article of clothing to be ironed! Oh my, oh prices have gone up, huh?
Praise God!
Do some elderly people never develop arthritis?
While there are about 27 million Americans with osteoarthritis, it is possible for a person to live their entire life without developing the condition. The number includes the elderly. Jul 7, 2022
I suppose people who exercise and eat healthy the majority of the time have a better chance of not getting it. Or am I wrong about this?
I think you are right. Well, you are not wrong, because the doctors will tell you to eat healthy, maintain your weight, and exercise.
In so far as you can delay the onset of a terribly debilitating disease that you are going to get anyway. Not sure. I really do not know.
So, maybe a better chance of health over the long term.
I was just adding to the discussion.
Yes, Lealonnie. Adding that, in your 60's and don't have it yet would be a good indicator you may not get it. I agree.
I guess it is luck of the draw. I am 67 and don’t have arthritis.