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.
I see the Opthamologist again next week and the PET scan is April 3. Praying the cancer is still undetectable.
Thanks to everyone for the kind words of support which I very much appreciate.
I sense your frustration over being a “Guinea pig” but Kaiser is definitely investing its best people on you. (It’s not like we have had any attention more than telehealth and nurse practitioners on our plan lol.) I would personally give them a chance as the alternative is inevitably dim. Either the uvalitis is resolved or you eventually go blind from its effects coupled with the untreated cateract s and glaucoma.
Anything with vision scares me so much. I hope they find an answer to this one. Am relieved Dr C. will work with the eye-guy.
I can't help but think that the vision is making an enormous difference in the dizziness, don't you.
So sorry to hear you aren't able to get out to those sales you so love.
I can't believe that Chuck is s/p two years now.
I remember that journey so well.
I hate that you've taken some steps backwards and I pray that that will only be temporary, as you deserve some positive news already.
I'm glad that you have your grandson to bring you joy. That is the gift of being a grandmother right?
It's hard to believe that it's been 2 years already since Chuck's transplant. I'm glad that he is doing well.
Now we just have to get you doing well. I'm continuing to pray for your complete healing.
You have a lot going on in your life right now. Well, actually you have had a lot going on for quite a while but at times it seems to amp up quite a bit!
I’m really sorry that you’re dealing with all of this stuff.
What a blessing that Chuck is doing well. Your grandson sounds absolutely precious!
Wow! Your ex is going through his own tribulations right now, huh? Investing is always a gamble. You win some and lose some. He lost big time!
Will be thinking of you and hoping that all of these issues will be resolved soon. Enough of this, right?
I certainly can’t blame you for being frustrated and discouraged. I wish that I could say something to help but you know that I am not the Pollyanna type. You have every right to feel as you do.
It takes time to process everything and even more time to implement a plan. Hopefully, your doctor will figure out the best way to deal with these problems.
Sending much love, support and prayers your way today and always!
The dizziness is a lot worse lately, too. Idk if the bad vision is a factor or what. But I'm back to using my cane in the house and not going out to sales. Which is depressing after being more mobile the past couple months.
Chuck's 2 year liver transplant anniversary is coming up next month, so there's a LOAD of tests ordered by the Mayo Clinic he has to undergo. He's doing fine, though, thank God.
My grandson turned 3 on March 4th and had a blast eating his birthday cake. His grandfather, my ex, gave him a cookie from his pocket for a gift! He's flat broke now after losing all his money investing in a pot farm. You can't make this chit up. He was feeling SO sorry for himself that he left the party mid way, after staring at me and then asking why my eyelashes are white? 🙄 It's mascara, bud, how do you like it?
I hope everyone is doing well. Sending you XOXOXOXO's
I was just on a thread from someone whose wife doesn't believe in western medicine (but is now showing signs of dementia). I wonder if people who believe this also never go to an optomotrist or ophthalmologist for their vision. Do they never get an eye exam? Never had an eye injury? Never get cataract surgery? Isn't this "western medicine" too...?
I wouldn’t risk getting on a watchlist.
I'm sending prayers, positive energy and wanted to let you know that you are not alone. I'm praying that you and your family will come thru this healthy, restored and stronger than ever. May God bless you all
Good morning, Lea. Have a glittering good day. ❇❇❇
My ophthalmologist was fabulous. She worked her magic on my eyes!
My husband didn’t have the same results as I had. He needs glasses to read. She told me that I was the exception to receive 20/20 vision.
I experienced slight blurring after the surgery, which is completely normal. It cleared up though.
I was told by my doctor that they can do a laser treatment to tweak the surgery if needed. Was that available for you?
Prayers for successful treatment and then successful cataract surgery. Mine was not an unqualified success. I got double vision in my good eye - 2 sets of red lights at traffic lights etc. but as long as I knew it was red I could respond appropriately. That has largely faded over time, but I did see more clearly right away - all 2 sets of everything were clearer than one set was before. lol
I guess the results of all these tests will bring some good news!
I’m so sorry that this is still another thing to deal with! 😠
Praying that your eyes resolve, and that you can get those cataracts done before the wedding. 💒
Wait until you have the cataract surgery. You will be so glad that you got it. It was the easiest and fastest surgery that I have ever had!
Oh my gosh! The difference in my eyesight was amazing after the surgery. I don’t even need glasses to read. I am unusual though because most people still need reading glasses. And colors are so vibrant after the surgery. It’s fantastic!
Shortly after my surgery, I was driving and I saw a tiny lizard on the car ahead of me while parked at a red light. I got so excited that I called my husband to tell him. His response was, “Honey, I am really busy at work today. That’s great that you can see better but seriously, I don’t have time to talk about a tiny lizard right now!” LOL 😆
The steroid drops were not monitored/dosedcorrectly by the optometrist and now I have a mild cataract in my right eye and a much thicker one in my left. They can't be removed until and unless the Uveitis clears up. So I have to use 6 drops in left eye daily and 1 drop in right for 3 weeks and go back to see what the next step is. She said I won't go blind, in spite of my vision being SO bad right now, so that's a relief.
So far, I'm negative for syphilis 🙄 and rheumatoid arthritis. The rest of the tests are still outstanding. Chuck is quite relieved about the syphilis.....
Hoping this eye issue resolves because it contributes to my dizziness quite a bit. At least I'm in the right hands now.
What a treasure! He will be able to keep that gift for a lifetime! My girls kept some of their favorite books.
Oh yes, your grandson enjoys his cars. Maybe he will own a car dealership when he grows up! 😁
He sounds absolutely precious!
NHWM...I bought my grandson a very old book of Aesops Fables so beautifully illustrated, it's amazing. It was written in 1919 and my copy was edited in 1937, in perfect untouched condition. A tub of Gears Gears Gears 150 pc building set and a Sesame Street Garage, since hes obsessed with cars and loves SS.
Yes, he loves our dog Honey but has a big Golden Doodle of his own, so he pretty much steers clear of both of them 🤣
That’s a precious age. My girls loved preschool. They do learn a lot and have fun along the way too.
Does he like your little pooch? What are you getting him for his birthday? If I had grandchildren, it would be tough not to spoil them.