
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 am sure your body needs rest. You have been going through so much. If anything rest helps with healing. I am sorry this taper is not going well.
Card games or Powerade - wish it was that simple.
Dd has CRF (Cancer Related Fatigue) and has asked me to look into several supplements for her. I suspect R has it too. You may have fatigue related to your cancer as well as everything else. Lord, have mercy!
(((((Hugs)))) to you for being such a poster child (person) for coping with all this.
Necklaces, earrings and bracelets. It’s relaxing and was therapeutic for me when I was caring for my mom. It took my mind off of mom for awhile.
No relief for me from the dizziness lately. The taper isn't going well. Slept since 3 pm yesterday and can honestly go back to bed now, but won't. 😑. The exhaustion level with each 5mg reduction is overwhelming. DDs idea to drink Powerade didn't work. Shocking, I know 🙄. Nothing works. Nada. My friend called to suggest Chuck and I play more "games like dominoes and puzzles and cards" together, which is a sweet idea, nothing more. If there was a simple, easy answer for a central nervous system disorder out there, it'd been found by now methinks. Especially if it was in the form of playing cards or Powerade.
Thanks for always checking in llamalover. Btw, do you own llamas? I love llamas too, they're soooo cute 😂😁
Golden girl, I sure HOPE I can get off the prednisone fully. Your lips to God's ears. I don't know WHAT to think at this point, tbh.
NHWM: what sort of jewelry do you make? You know about my OBSESSION with jewelry, right?
Dizziness go away and don't come back another day! Shades of an old nursey rhyme.
Thx gershun. That's interesting. Ginkgo in combination with a substance called cistanche, has been shown to improve QOL of life for people suffering from CFS. We with CFS are lacking in energy. So far I am finding that it helps quite a bit.
Strange that you have read that it increases anxiety as what I have read says the opposite. However I had trouble getting to sleep last night so I am cutting down the amount I am taking though It may have been too much caffeine. It's trial and error all the way.
Have you tried Relora for anxiety? It seems to help me. And I do deep breathing especially at bedtime when my thoughts are spinning through my head. I have to be quite persistent with it but it does work for anxiety if I stick with it.
Geaton - I thought of a tumbler too but never got one. I think they must use something like an electric sander for big rocks. What a wonderful trip with your mum. That's one I would have loved to take. Geodes fascinate me and the fossil...love, love, love!
Lea, still praying..........
“Rejoice in hope, be patient in tribulation, be constant in prayer.” Romans 12:12
Oh my goodness, Lea. your sil! I wouldn't want to go in her house. I love rocks too and those sliced ones but you really have to pick and choose if you are going to display them. Well, I guess you don't have to, but for most people you do.
You are getting to the end of the prednisone Yay! We will have to have a "No More Prednisone Party" 🎈🥳🎈only I think it needs a catchier name. Maybe Prednisone Free At Last" or something like that.
Dancing that went out with the laundry a long time ago! Ex was a pump your arm dancer so I didn't encourage it. lol We did alright if it was a jitterbug sort of thing - shows how old I am. 💃😆
Busy and frustrating day here so I am going to get well into the latest mystery -after I have done the online banking I have been putting off. Though technology can be very frustrating. I am always so very grateful for online banking.
Started myself on ginkgo and, wow, I have more energy and feel better. Let's see if it lasts or I crash in a couple of days.💥💥💥
Have a good evening all and hope you sleep decently Lea. It really helps.
cx - naps Oh yeah!!!💤💤💤
We are currently babysitting our four year old grandson, while his parents are on a date.
Ya know what 4 year olds do NOT like to do?
Nap!
Ya know what 59 year old grandmas like to do?
You guessed it! 😂 😴 💤
I’m sorry about the Taper Dizzies. I pray that with the last taper, those dizzies will leave forever!
I started making jewelry years ago because it is so much fun to buy gemstones and create different designs to wear.
Nature provides us with gorgeous rocks that serve our needs in many ways.
My niece has been working as an interior designer for many years. She loves using marble, granite and quartz in her designs.
My birthstone is opal which is a beautiful rock! 😊
Those chip-away blocks you mention are very neat things. Kind of like an archaeological dig combined w a treasure hunt 😂
FG, ty for the prayer.
Golden....my sister in law is a hoarder. A real full fledged, dyed in the wool hoarder. Her new obsession is rocks and minerals. But HUGE ones mostly that sit on pedestals and are quite fascinating looking if there weren't so MANY of them 🙄. She goes to rock shops and estate sales and buys a lot of them to put around her house. I bought her sliced rock bookends for Christmas this year. Nobody is allowed in her house but she sends me photos of all her new acquisitions. I think she's up to 12 chandeliers in her living room alone! Plus she's taken a volunteer job at a thrift shop (!) or 2 so she can be the first to lay eyes on the new donations that arrive. Sigh. That's where the last cameo glass chandelier came from. Meanwhile, you cannot open her garage door for the stuff that's packed inside.
I went down to 30mg of the poisonous prednisone today, already feeling miserably dizzy....so I don't have high hopes to go dancing tonight. Plus Chuck doesn't dance 🤣😂😁I hope everyone has a great Saturday
It is strength that endures the unendurable and spills over into joy." Colossians 1:11 MSG
I'm trying to find where the discussion of rocks originally started but I'm not finding it. My grandkids like the blocks you can buy for about $5.00. They chip away the outside to find the surprise rock inside. They've never hit the gold piece, but they have gotten some very pretty rocks over the years. Back when we did Christmas stockings, these were always a hit with the gks.
My oldest daughter loved her rocks! The younger one had to copy her sister and became fond of rocks too.
I love that you found a mystery rock!
He sounds precious! Funny that you mentioned tools. My youngest daughter loved playing with her hammer and peg tool toy. I guess she was around 2 years old at the time. Well, all of a sudden I heard a loud crash!
She must have tired of hitting the pegs back into the holes and decided to try out her hammer on coffee table with a glass insert.
She was amazed at what she was able to do with her hammer. I wasn’t all that happy with her destruction! LOL 😆 Oh, the things that kids are curious about and try! Needless to say, we had a talk about breaking things. They are kids and will try things.
My MIL said that my husband’s brother took a screwdriver out of his dad’s toolbox and stuck it into a wall socket because he was curious! Sparks started flying! Geeeeeez!
I loved playing with my younger brother’s trucks and cars. Back then they were all metal. Those Tonka trucks were a lot of fun! My girls liked playing with the little matchbox and hot wheels cars. They are cute!
I have been to that museum. It’s lovely. I have been a few times. After our children were born and we took them, my daughters bought rocks from the gift shop. My oldest daughter was obsessed with rocks at the time!
What is your grandson interested in right now? He sounds so cute! Maybe one day I’ll have grandchildren to spoil. I don’t say anything to my girls.
They aren’t in relationships at the moment and I don’t believe in pressuring children to have children. It’s their life and I want them to live it as they wish. I would adore having a grandchild though.
It amazes me how you're still such a help on this site! I know that so many are so very grateful!
I am glad that Chuck is feeling okay.
All I know is that my daughter said that the moth situation was due to the recent weather. Her old neighbor said that the weather hasn’t been the way it usually is in Colorado.
Colorado is such a beautiful state. I’m sure it’s a lovely place to live. My daughter said that the cost of living has been increasing and that it will be a struggle to buy a home there. Her rent was high. She’s sticking to a strict budget right now.
I feel for younger people these days. Everything is terribly expensive.
I don’t think that I would have had the courage to move across the country like she did after graduating from college. I’m proud of her. She did land a great job. There are more opportunities there than there would have been here. It’s wonderful that her company has allowed her to work remotely. She is looking forward to returning to Colorado.
FG: bc people wouldn't get sick and/ or die if God fixed every issue for all of us. My fb stage 4 melanoma group would not be filled with memorial photos of loved ones who succumbed to their cancer if He did. I know most of these people pray and have faith, too.......yet they're not healed bc that's how life plays out sometimes. That's my belief and not something I will change my mind about. If God decides to heal me, great. If not, not. However this plays out, I won't be shocked, is my point. I'm grateful to be alive 5 months after this dx, tbh.
Nhwm.....Its MILLER MOTH season, I forgot! They come around yearly and are hatching right now, Chuck said. I don't go outside so.....😑
The Bible says that if we have faith the size of a mustard seed that we can say to our mountain move and it will move. So we don't have to have a lot of faith to make our mountains move, but we must believe that they will, and "expect" that they will.
So I am expecting God to fix you and am thanking Him in advance for doing so.
How is Chuck doing? Is he feeling okay?
PS: the doctors and specialists cannot tell me if my CNS condition is permanent or temporary, or how long it will last, or anything else, bc they have not really seen it occur but a few times throughout the history of immunotherapy treatments. "If" I stay in remission and "at least 85% w/i a year" is too much to think about right now, having dealt with this for so long already. I prefer the One Day At A Time approach in an effort to save my sanity, tbh. I will continue on with my monthly IVIG infusions which are thought to be the best treatment, and pray for the best outcome.
As you know, after my daughter graduated from LSU she moved to Colorado. She fell in love with Denver!
Unfortunately, her relationship with her boyfriend fell apart. She decided to come back to Louisiana for a while and then return to Colorado. She is able to work remotely with her job.
Yesterday, she was talking to her old neighbor on her phone. She said that there were tons of moths in Colorado right now! Supposed to be due to the weather or something. Have you seen lots of moths in your area?
Y’all don’t deal with mosquitoes like we do here, huh? Our mosquitoes are awful. My daughter said that she loved living in a mosquito free area of the country when she was in Denver.
You don’t have the humidity that we have here in the south. Louisiana is a freakin swamp!
Thinking of you and longing for you to feel better. Sending hugs and all my best wishes to you.
Peggysue, I've had no chemo or radiation to date, but maybe your MILs info will be helpful to someone reading my thread. I've only had 2 immunotherapy treatments, one of which caused an audiovestibular toxicity reaction that's manifested itself as a central nervous system disorder. I can always run this by my oncologist later in the month and see if he can add in a blood test to check for fungus in my lungs. Thank you for posting and let's put any and all of our "history" aside, ok?. 😁
Geaton, I have nothing but time right now so 5 weeks I'll wait and see what happens. I just pray things don't continue going downhill. What I feel IS similar to vertigo......in many ways. It's just not TREATABLE as vertigo is, unfortunately, so I can find no relief. One year is a long time to deal with such a thing post covid, and also while pregnant My God, what a huge deal those events were, especially covid. Ugh. Maybe my dizziness is gradually lifting too since I DO have a decent day every once in a while. Is that how yours dissipated too?
Gershun, you just have to love how these doctors want to treat us like drug addicts huh? Yet try living a week in our shoes! I will say Dr C is the opposite.....he would write me a script for anything at any time. I guess I had to get stage 4 cancer in order to get THAT privilege 🙄. Funny thing is, I'm not much OF a medication taker to begin with. I do take 2 Tramadol a day for pain management and an occasional Xanax but I've had a 30 day script for the past 3 months....lol.
Golden, omg, I have a TON OF ALLERGIES both food and environmental. Horrible. Mosquitoes being one I'm anaphylactically allergic to, believe it or not. Long history of chaos there, and one reason I'm in Colo where the mosquitoes are thin and half dead 😂🤣 . I'm also allergic to beef, tuna, YEAST, citrus, milk and 90% of everything that grows outdoors. A walking mess! I have ordered the supplements you've recommended for FM.....gotta do SOMETHING. If it walks like a duck et al.....ugh.
FG.....I don't believe that God is allowing or disallowing all this suffering with me. It's just part of my life's experience. Which is to say I'm not angry at God and lashing out, or expecting Him to fix me, etc. I'm expecting to push thru this situation, one day at a time, to the best of my ability, and arrive at a different place when it's over. What place, I have no idea. But that's the human journey, imo. Not directed every step by God, but observed instead.