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.
We're all praying for you and I hope tomorrow turns out to be a very productive and positive day - and outcome. Sending hugs and positive energy your way
XO
Thanks GG. Today has been none of what you'd hoped it would be for me 😑
I'm still battling what feels like vertigo with tinnunitis or some kind of hearing/balance issues.
I slept poorly again last night and woke up with raging brain buzzes and a fever of 101.5. Chuck was ready to call 911 for an ambulance to the ER, I was that bad. I can't walk without a cane, I can't hear sounds clearly, but I'm not nauseous at least.
The doc said I need a brain MRI and blood tests at the ER tomorrow to see if this is neurotoxicity from immunotherapy! Ugh. Now I'm really worried as this can be permanent AND stop or reduce my treatments.
Jjust the thing I was praying wouldn't happen.
Took me reading a couple of responses before figuring it out.
No trip to the GYN!! 🤣
I’m moving slowly today, and so, apparently, is my brain!
Prayers continue!
I guess YOU are where I got the Mrs. Lincoln joke??? I thought only I was perverse enough to love that one. I am a total Lincoln fan. Comes of my Dad taking me yearly to his tomb.
I hope the dizziness abates. So agree with you about medical. Either they make a federal case out of it or negate you completely. Hillary Mantel (author of Cromwell) was dealing with the British system but her whole story about the decades long missing of her endometiosis until it had destroyed her insides was a nightmare read. She basically said that for a woman, if they don't know/can't find what you have they just label you "crazy" and that eventually she actually believed them.
I hope the day is good, the ativan totally out of your system and you feel better. Thanks for the family celebration story as it was another of your gems.
Sending love and prayers your way.
I feel horrible today with dizziness almost like vertigo which I'm praying this isn't. The hi dose steroids used to treat vertigo are not something I'd look forward to! I'm using my cane and stumbling around.
The infrequent pain in my right side is not gall bladder related,,that would have shown up on the CT scans w contrast. The liver, covered w cancer, is on the right side.
The nausea is mostly gone and I have Zofran and other ideas if it comes back badly. I wish you could all come sing to me at my window too, but this forum is the next best thing.
Stop biting my lines Alva, "Other than that Mrs Lincoln, how was the play?"🤣😃 is a line i use frequently.
Hope, I like your thinking and will try coconut water.
I've honestly had enough sleep these past 5 weeks that I should be fully healed by now. I'm ready to feel human again and stay out of bed!
Bandy, like Dr C said, life's not fair so we deal with what's on our plates. Let's hope he never has to though, huh? 😑 I'll be the first one to say our entire medical system is BROKEN. AND NO, THE ONCOLOGY NURSE never did call me on Fri as promised. Shocking I know. Not. My vaginal itching is all gone w no treatment too, so so much for a trip to the gyn. Oftentimes I question whether to even call these nurses, tbh. One rigmarole bs story after another. Tomorrow they'll probably conclude I have a brain tumor due to the dizziness and off on another wild goose chase they'll want to send me.
This immunotherapy has a TON of miserable side effects the doc said WOULD KICK MY ASS yet the nurses either dismiss them or want to make a federal case about them. So far I'm not bleeding from my ears so that's a good thing.
Send, I'm sorry you had a bad reaction to Ativan too, but happy to know I'm not alone. I was having bizarre dreams too that night like I was in a funhouse of no fun.
We did go to my son's house today for his and my grandsons joint
birthday. G/s is 2 and son 38. I had to lie on his recliner the whole time, but I made it. My ex was there and chewed my ear off the whole time about how horribly anxious he is about getting a new hot water boiler system installed tomorrow. Really? A man who's gotten clean PET scans for 7 years after a stage 4 colo-rectal cancer dx in 2016??? I told him it's never the stuff we're anxious about that happens. It's crap from out of left field we never imagined happening in a million years. Celebrate your victories and quit sweating the easy stuff. I'm sure it all goes in one ear and out the other bc he's a professional complainer and whiner.
My son had to chat w him 3x about NOT bringing up my cancer w me. I am not in the mood. So right in the middle of a video call with my grandsons other grandma, he yells out OH I HEAR YOU'RE NIBBLING ON POT GUMMIES?? Ugh, my son had a fit and said dad, you're on a sound sensitive recording so please stop. He wound up leaving 15 min later bc he was insulted. Best idea EVER was to divorce this man in 2002.
I am SOO sorry about the Ativan!
I’m praying for you to find a GOOD solution to the nausea! May God give wisdom to your docs.
I wish we could all show up at your house at once and sing through your window and remind you how much your are appreciated here!
For me, in fact, the benadryl, which puts hubby to sleep at 1/2 tab, makes me restless, with restless leg syndrome and etc. Drugs are just such a mixed bag.
Be real careful about taking ativan in future. From what I can quickly find on internet the half life of ativan is 12 hours, so you might feel a bit of a mess from it for a day or so until its out of system.
Hoping you feel better today.
I guess the awful irony would be to ask "But how was the nausea?" And I DO mean that as one of those awful jokes such as the one which goes "Other than that, Mrs Lincoln, how did you like the play?" I know. Some are out here being prayer warriors and some are telling entirely inappropriate bad jokes. But you know me. AND you know I love you.
What can I say.
I'm glad you've been eating watermelon - hope it helps to hydrate you (and coconut water helped me to hydrate more than regular water).
And just think that the feeling of nausea is the cancer cells are surrendering and leaving your body.
Wishing you an easy day
XO
Prayer gone up and...haveca blessed day.
But so sorry it didn't work for you. Have you tried Gravol for the nausea?
I still pray for you nightly.
Ativan is a scary medication for me. Only one pill and I was standing next to myself (out of body) as if I was watching a slow motion movie. You are right to be ever so careful.
Not all of the immunotherapy side effects are from the injection maybe. Your doctor still needs to be aware that, for example, your symptoms could be
gall bladder. Don't want to worry you. Just be aware.
Still, more prayers this will be going better for you, more peace, more comfort.
Hugs, hugs and more hugs. Of course, lots of prayers too.
Following Geaton's lead, I offer my favorite scripture verses to bring you comfort:
God is our refuge and strength, an ever-present help in time of trouble. Psalms 46:1
Be still, and know that I am God. Psalms 46:10
I don't post often, but I vividly remember logging on to AgingCare while in the deep pit of "Dad care" in the spring of 2020. Lea, your posts touched me from the very beginning. You were honest, funny and had a keen sense of self-preservation. I needed all three! Still do! You have helped me tremendously and I will forever be grateful for your words of wisdom - and the belly laughs! Keeping you in my prayers wonderful lady!
Asking God for the side effects to ease up, those cancer cells to be destroyed, and for peace to keep reigning in your hearts!
You are my sort of "Dr Laura" of Aging Care. The one who can read it and size it up in minutes; her callers will sometimes say a quiet "wow. woooowwww. All these years of therapy....". You are able to do what she does, just by nature I think, because no amount of teaching can teach it.
I just love your style.
Praying for relief for the itching. It’s crazy-making, for sure!
I was away from AC forum for some time, just reading your story, so sorry.
Wishing you total recovery.
And I was reading about Jimmy Carter and yes he had immunotherapy in 2015 at age 91. Now he is still alive at age 98! And you are so much younger!
The nurse hasn't called me as if 245pm on Friday, just as well. Alva, the Monistat arrived and I'll begin the 3 day course tonight.
GERD is creeping back in, I was up 3x last night to eat TUMS. I'm not surprised but it was nice to be rid of it while it lasted. I did 10 min of lite cleaning earlier in my kitchen and had to come lay on my heating pad for my back pain.
The wing chair I had to list for free on Marketplace (Which was going to be free anyway). The lady who picked it up this morning said WOW THAT'S BIG which she'd have known in advance had she read the listing. 🙄 She seemed disappointed and sorry she came to get it, so maybe they dropped it off at Goodwill on their way home. Not the situation I was hoping for with a high end carved claw foot chair, but oh well. It's out of MY house anyway.
Did anyone know Jimmy Carter survived stage 4 metastatic melanoma that was in his brain? He had it in 2015 at NINETY ONE and went thru immunotherapy. Has had clean PET scans ever since! That gives me hope.
Thanks all, for the kind words and posts.