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.
Hope today is a good day for you.
My Mom always claimed it rained on Good Friday. We had our rain, so I can relax! To all, whether this is a Faith celebration or a celebration of Spring (and new patent leather shoes), I hope all enjoy Easter Weekend.
@Geaton, I agree on medications. We all think meds are benign, and in fact they are hard on the body, the kidneys, etc. The worst way I see people thinking things are benign are supplements. They are so unregulated. Happily the internet is full of warnings. But do folks go there, or just injest stuff?
Lea, I got so much help on a Facebook group when my bro first got Lewy's. One of the pages actually was run by a man WITH it, who crossed the country lecturing about it. When I first got cancer I remember feeling the worst sort of odd "shame" over what I was putting my family through. Later it became so easy to speak about, just a part of my life, a part of who I was, and of course now will always be a large part of me. Along with all the awful stuff it brings it can bring a lot of peace, perception, self-awareness, recognition of love and joy, strength.
Just wanting to let one and all know, in any Easter Parade, my parent's baskets would have won first prize. Do we all think that? Do kids still search for the baskets today. Even my grandkids are grown, so what would I know.
Bx gurl who spent lots of time on LI with the family!!! Loved Roosevelt Field, I still mourn Alexander's, and I'm buying some yummy pastry and cookies at a good bakery for Easter.
Lea, no wonder you're handling this like a champ. LI girls don't take poop from anyone, especially some misbegotten cell! Loved that you compared your bout of the unbalanced to drinking Boones Farm. I now can grasp what you're feeling, however, it sends me back to the unfortunate time at age 16 I consumed the same beverage in a large quantity and then proceeded to upchuck in my father's car. Yeah, almost got home, but then we hit a pothole. The car went down, the Boones Farm came up. Not pretty.
May everyone in this group have a blessed, peaceful day as they celebrate Easter/Passover/Ramadan this weekend. If you don't celebrate a holiday, have a peaceful, happy weekend.
FTF...fight on gurl.
Extending my wishes for all Easter blessings upon you and your husband.
Below is part of one of my devotions for Good Friday and I wanted to share it with you Lealonnie, and anyone else who needs some encouragement.
....."But here's the good news we can find on this Good Friday: The cross wasn't the end of the story for Jesus. Actually, it was only the beginning. And because of the resurrection power Jesus brings, Good Friday is only the beginning for us too.
Suffering may be a part of our story, but it doesn't have the final say in our story.
Heartbreak may be a part of our story, but it doesn't have the final say in our story.
Grief may be a part of our story, but it doesn't have the final say in our story.
Good Friday is our reminder that when everything feels lost, when darkness seems to take over, there is hope on the way. We know a better ending because we know a victorious Savior. Darkness may last for a while, but joy comes in the morning.(Psalm 30:5 )
Easter isn't just an annual celebration. It's a personal revelation for right now. It's where the unknowns of today feel less excruciating because of the certain victory of tomorrow. Oh friend, take heart. Keep holding on to the hope you have in Jesus. He really does understand the depth of carrying sorrow and hope at the same time.
Keep these Good Friday reminders for an ordinary day when you need to be reminded you are not walking alone in your pain. Jesus hears you. He sees you. He understands you."
Praying you have a truly blessed Easter weekend with your family, and that you can feel the love coming from all your followers on this forum.
Jones Beach was where I kept the lifeguards busy rescuing my sorry azz from the undertow after wading out too far. Again and again. 🙄
And FORTUNOFFS! THE best store on earth and where dad bought ma the 2.5 carat diamond rock for their 25th after she bitterly complained of the "chip" he gave her as a poor Army veteran in the 40s. She then proceeded to have the ring sized at a different jeweler and INSISTED he swapped out the Rock w a cubic zirconia! She wound up leaving that ring in the vault for decades! I now have it and can vouch for the fact it's a real diamond. Ridiculous things anxiety ridden minds fabricate.
Tynagh, lawn-gisland and NYC girls rock! We're tough and we take no prisoners. Yes, dead drunk is how I feel 24/7 basically. Swimming head and totally off balance...... can't walk a straight line even with the frame walker. Eyesight for distance is skewed too, hearing is compromised as well. My vestibular system is screwed up, is what it is. And a good bakery (or deli) is non existent in Colo, even now, as such a big city. Chuck went to buy my mother struffoli last Christmas, drove 30 miles across town, and came back with a tin foil cup the size of a large muffin w about 25 balls in it! No Jordan almonds, 31 half dead sprinkles all covered up w a piece of cellophane! I nearly had a fit when I saw it! The Cake Boss would have, no doubt, even though he's in the hinterlands of Jersey. Sorry JoAnn and Geaton, but you know about the running feud between N.Y. and Jersey girls 😂🤣😁
I miss making Easter baskets for the kids, and coloring and hiding eggs that needed a map to recall where. Those days rush past too quickly, isn't that a fact?
Funky, ty for the comforting words today, and to everyone who's rooting for me. You guys are the best.
" If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. " James 1:5
I have found this scripture so useful. When I need wisdom over some issue I pray at night that God gives it to me when I wake up the next morning - and He does!
And just to share that God does have a sense of humour. Once I was praying for wisdom over a difficult person in my life. The next morning I woke up with this on my mind.
"X" is a jerk!"
It was true and helped me gain the right perspective for the situation.😊
Re supplements, Alva, there are supplements and there are supplements. I never took much of anything till the past few years when I started taking supplements to help the CFS/FM I have. They are helping me very significantly. Many people with this condition use a number of supplements to make up for what is lacking in their systems. e.g. CoQ10, carnitine, Vit D, and many others. I have much less pain and brain fog than I had, and more energy. However, I hear your caution about the lack of quality regulation. It is very important to research sources that are reliable and safe. That information is available online. There are safe sources.
Lea, if you kept track of your audiovisual symptoms, would you see them lessening slowly over time - with ups and down, I do understand. But is there a trend downwards? I find it handy sometimes to keep track of something I am wanting to change. I lessens the impact of the daily roller coaster ride we can have and may also help you find some useful connections. (((((hugs)))))
I do not notice a downward trend in my symptoms, no. Things wax and wane daily though. I'm able to walk while holding the frame up 6" most often now, regardless of how dizzy my head is. The muscle memory is still intact I guess.
My bff from childhood sent me an article this morning about probiotics and how mice being given them are showing a much improved response to immunotherapy for melanoma specifically! The amino acid Tryptophan seems to stimulate the T cells to kill off tumors. Studies are underway now.
Happy Belated Birthday! If it was yesterday, the 6th, you shared it with my Mom and my BIL.
I am a private person so if I was sick only my immediate family would know. We need to see a lawyer about POAs. I think I will have my DH and older daughter share Medical. The reason why is my DH is deaf in one ear and only hears 20/30% with the other and thats with a hearing aid. He does not hear words like we do. He misses a lot. So assumes. DD is an RN so she can talk to the doctors and interrupt for her Dad.
I got in the mood to bake so I baked 2 loaves of sour cream cake. Its cooling now so need to get it out of the pans.
((HUGS))💞 and have a blessed day.
PS...just had a pc of that cake and it was soooo good.
Is walking without the frame, regardless of dizziness, an improvement? For all of us movement is a good thing.
Thank you for that info about the probiotics and immunotherapy, also about tryptophan and T cells. Interesting! In my condition I need a boost to my T cells. I will look up that and the probiotics and immunotherapy.
I'd be interested in the link to the article if you want to share it. There is such a wide range of probiotics, I wonder if any specific ones are more important than others.
Reading research is a joy to me. I am insatiably curious. I prefer it to TV
I know! I am weird!!! 🙃
ETA: Is it this article? "A high-fiber diet may improve the response of melanoma patients to immunotherapy." https://www.cancer.gov/news-events/press-releases/2021/high-fiber-diet-melanoma-immunotherapy
It's not just mice but humans too. 20 gm fiber a day may improve the outcome of immunotherapy for melanoma. Like movement, fiber is good for all of us.
https://medicalxpress.com/news/2023-04-reveals-diet-probiotics-boost-melanoma.html
Yes, walking while holding the frame up and/or toddling around w/o it IS an improvement. I always rate my drunken-dizziness on a scale of 1-10 daily, too. It's never more than a 7 or less than a 5. No matter what. No rhyme or reason to ANY of it, either. I feel like it'll just lift one day, like that, w God's help anyway.
JoAnn and Golden, my "should be dead by now" birthday was April 4th. Since I'm still alive, sp wished me a Happy Birthday which is where that came from. I'll be 66 in July.
Obviously I'm not much of a private person and my story is an open book for all to read 😁
The late psychiatrist M. Scott Peck said, "The absence of fear is not courage; the absence of fear is some kind of brain damage. Courage is the capacity to go ahead in spite of the fear, or in spite of the pain."
That random quote is from 50 Days of Hope and I just LOVE IT!
Your comment that you missed making Easter baskets for your children made me smile. It reminded me of when my daughter was away at college her freshman year.
A few days before Easter I went to the store to pick up last minute items. One being, Easter candy, chocolate eggs. We don’t like the nasty cream filled ones.
I was standing in line at the register when my phone rang. It was my daughter saying that she was looking forward to see us for Easter dinner and then she asked me if I was going to make an Easter basket for her. LOL 😆
I said no, I wasn’t planning on making any baskets and told her that I was buying chocolates for everyone. She said, “Mom, don’t forget to get me a chocolate bunny!”
I ended up buying a chocolate bunny for everyone in our family.
I remember you telling everyone about the elaborate personalized baskets that you made for Christmas. Baskets are fun to give and to receive.
Have a wonderful Easter weekend!
He broke 33% of the bones in his body, crushed his chest, punctured his liver, etc. He now has plates in his legs, face, you name it.
Reason I'm mentioning this is I was so impressed with his attitude about the whole thing. He seemed more concerned with how it affected his family than himself. He said the whole incident brought so much love into his life. Love he always had but maybe took for granted?
Lea, even though you probably don't think so you have that same spirit in you I think. It's admirable.
Happy Good Friday everyone!
I saw the commercial for it but I missed the interview. He appears to be extremely grateful for the love and support from his family.
Lyn Eib writes her post tomorrow on this very subject ( I peeked, admittedly).
I think, in the midst of all this prep I'm doing, we DO have a stronger love between all of us in my family. I've seen Chuck rise up to be even stronger and more compassionate than I ever thought humanly possible. Yes, we all take things for granted but it oftentimes takes a crisis to appreciate the beauty that's been here all along.
Ty for saying my spirit is admirable when I question myself daily.
I felt as he did when I got cancer. I felt guilt that I had "put this upon my family": a kind of "shame" that I had done this to them. My new partner, my just barely grown daughter, my gentle bro, my mom and dad in their last years.
And that was over 36 years ago.
I think it is a common feeling and I am not certain if it is a kind of denial, or if truly the worst thought IS that of what we do to family.
I so recall you, Lea, saying here that one day that watching Chuck's grief "shattered" you. I make the mistake of saying to let him have his tears, and your replied you were willing to, but that it was the single thing that could SHATTER you. The word so evokes the feeling of just being shred into splinters of ourselves with watching our families.
WE, the patients, are often busy dealing our illness. All the appointments, the therapies, side effects, bills, jobs, consults. Just DEALING with it, and what we have to do to keep down a bit of food, to exercise, to help ourselves heal. We are BUSY.
But our families feel helpless in a standby of limbo. It is hard for them. They have more time to be afraid. And those of us who, like Lea, are the caregivers of the world, those who think of others, have very strong empathy genes. Easily triggered.
Witness whether bad day or good we can always find you, Lea, up on the high road trying to help and guide our OPs. Trying to do what this Forum is all about. You think so often of others. I felt such understanding when you said you couldn't WAIT to be able to do a bit around the house. For me it has ALWAYS been a sort of loving zen taking care of my house. My stuff. Making it pretty and nice for those I love to share with me.
It's hard for some of us to let others care for us at all. The joy Lea can take in letting people who love her DO for her (cooking and whatever else) is a sort of grace. Many cannot find that level of grace within themselves I do think. But it is always hard to see family do for us what we once so easily did for them.
Just one more reason that there's no one with a bad thing to say about Lea! No one I ever saw, anyway. And, hee hee, I better NEVER EVER see one!
I can tell that you are a 'ducks in a row" kind of person like me. I already have my funeral plans made as well and my children know what I want, which is important. I guess I learned that with my husbands death, to be prepared, as we're all going to die one day, and none of us know when.
Of course the most important thing is that we know where we're going when we die. And I hope and pray that you have the knowledge and peace being a Christian that you will be in heaven with Jesus when your day comes.
I'm still praying for a miracle, but admire your strength and honesty in getting things done that you need to.
You’re the best. WHENEVER the need comes, your family will be so grateful that you made all those plans in advance.
They are blessed to have you as their mom.
But he took most of the focus off of himself during the interview and spoke so lovingly about his family, his mother who was a single parent, his nephew and sisters. It looks like they gather round him every day. It was so nice to see.
I had completely forgotten about that!
golden, I have had CFS/FM for the last 20 years. It began in my late 20s after a massive viral illness. I am now pushing 50, and it is ramping up again. I have always wondered what this will be like as I get older… I do have moments of panic when I think that I have to deal with this extra massive thing ON TOP OF what comes in the next few decades… it is nice to hear that you are managing it. You give me hope:)
Bring on the Peeps, my peeps, and a beautiful Easter to you.
I'm glad this is a safe place, Lea and others, for honesty. It is always good to have a place to be heard and exchange ideas when our real-life people don't want to hear it.
Breaking news on NPR this a.m. is that the Cadbury Bunny this year was won by a kitty named Crash, a rescue from the side of the road with one eye. His prize money goes to help kitty rescue. He apparently got the gig by being able to sit still and smile for the camera for the required time. Apparently any species can apply for the Cadbury Bunny, so next year we'll do Honey! Just to let you know that your Easter Basket deliverer may look like a kitty this year.
Have a Blessed day
I woke up w a 5 level dizziness which ramped up to a 7 in 2 hours, as usual. Yet, I'm WALKING some on my own w/o the frame! Albeit a bit all over the place.....but walking nonetheless. I'll take it. Next I'll try the cane when I get steadier on my feet. Thank God I've been moving around at least 1 hr per day since this whole mess started, except while hospitalized. These stupid floaters are still around, believe it or not, and very irritating today for some reason. I keep thinking a wasp flew into the house but that's not the case.
Honey would love a Cadbury bunny, chocolate or otherwise! 🤣 She's supposed to be a mini dachshund mix but she's more portly than anything, thanks to CHUCK feeding her table scraps all the time. Ha. Who can resist such a cute face? Hers not his, that is.
Geaton, ok then, it's agreed that ALL feet are better OUT of our faces while in the workplace! 😣 When I was 16, dad told me if I wanted a car or clothes, gas, etc, then I'd have to work for it (speaking of surviving the 70s GG). So I took that shoe job @ Alexander's from 6-10pm nightly @ $2 per hour. I managed to save $650 in about 18 months to buy a car that way, too. Dad said I could buy his 1968 Buick Riviera. I said How Much? He said How Much Did You Save Up? I said $650. He said Ding Ding, That's the Special Price for You Today! I bought that car, drove it to my BFFs house where a truck proceeded to hit me while making a left turn! Dad was not real happy, especially since I didn't get the guys insurance info! Ugh. Dad did me a big favor by teaching me two things: how to work hard for what you want in life, and how to never forget to ask for car insurance info after an accident 🙄. Dad died in 2015 at 91 years old, and I think of him fondly every day.
I hope you all have a beautiful Saturday today.