
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 love to hear about your jewelry finding talent. And, always with an amazing humorous ability to describe a situation; be it jewelry, or even your own health challenges!
Proud to be in your fan club!
It’s true that some people are not capable of building genuine relationships with their family members or with anyone else.
My husband’s grandmother was like that with her only daughter, my MIL who was the polar opposite of her mom.
Hahaha, my mother in law would laugh when she would say that she always wanted more children! Not true.
The inside family joke was that my MIL was conceived because her mother must have come home from a holiday party a little tipsy because let me tell you, this woman was not affectionate with her sweet husband at all!
Many times we witnessed how cruel my husband’s grandmother was to his grandfather. Very sad.
My MIL once told me that she wished her father would have divorced her mom so he could be happy. Back then, devout Catholics didn’t discuss divorce.
Yes, passive-aggressive was moms middle name. Everything was hinted at or suggested. Never said outright which could be "held against her". I used to ask her to please beat me up and get the misery over with rather than prolonging it with The Silent Treatment for days or other suitable passive-aggressive punishments they love to dole out based on the Crime they view that's been committed 🙄
Truth is, people like my late mother cannot have close relationships with others. It's impossible. They push others away with their behavior and then blame THEM for the fact they have no ability to be intimate or loving.
Those traumatic days are gone now, but some memories come back in dreams which are quite surprisingly vivid!
Oh, gosh. Your mom was terribly passive aggressive. Honestly, I would rather someone tell me off, so that we can clear the air and resolve issues, than to have them be passive aggressive. It’s extremely hurtful and quite insulting to our intelligence!
As if, we can’t see through their shenanigans? Right? Of course, we can see through it. Their behavior isn’t sincere. It’s an act in attempting to appear to be sincere, foolishly thinking that they can get away with it. They never do.
Most people can spot this behavior for what it is, yet they keep on trying! Don’t they?
It’s sad for everyone. They miss out on genuine relationships and the people who are hurt, live in perpetual frustration and disappointment that they don’t have the relationships they desired to have with them.
Golden, it's not about "forgiveness " with my mother, but about a lifetime of trauma she's heaped on me due to mental illness. It takes a toll. And yes, dad should have put a stop to all the insanity years ago but never did......he bears responsibility here too. Nobody is ever blameless in such a situation except the children who suffer the fallout.
Oddly enough, my mother was hard on me but shrouded her words carefully so they sounded like praise. But her actions said otherwise. Like "gee you're smart but don't waste money going to college" and "gee you're not fat at 10 but please wear this girdle" and that kind of thing. Words have to be followed by the appropriate action or they're hollow lies. Mom was all about the outward appearance, keeping up with the Joneses, and never letting her slip show. Me not being genetically tied to her meant I didn't look like her or have her body type...which was an issue for Keeping Up Appearances lifestyle and further alienated me as an adoptee w no siblings.
Was reading about your dream. Dreams are fascinating, aren’t they?
A dream analyst would give up if they tried to analyze my dreams LOL 😆 I have some doozies!
It’s odd that some people don’t even remember their dreams. My husband doesn’t remember any of his dreams.
I love spicy pickles! My favorite are the homemade ones that I buy from the farmers market. If I purchase them in the store, I buy Wickles.
I cook soup all the time. I don’t use a crockpot for cooking soup. I cook it on the stove. I will have to try using a crockpot for it sometimes. I cook a few things in my crockpot. I like to cook a pork shoulder in it for BBQ pulled pork sandwiches.
We did buy an instant pot and I use it occasionally. Do y’all have one? Would Chuck use one of those? My husband is actually better at using the instant pot than I am!
You don't forget. I don't see how you can, but speaking for myself, you can forgive and the memories are "softer". They don't hurt anymore. I forgave and forgave and forgave. The bible says to forgive not seven times, but seventy-seven times. I pondered this a lot when I was young in that dysfunctional conflicted household.
One day I counted how many times I had forgiven mother and I stopped when I reached seventy-seven (wasn't even supper time yet) and asked "What do I do now?" The abuse continued, obviously.
In time I came to realize that it wasn't me, it was her, and that she was mentally ill. Perhaps to some extent she couldn't help it - though I do believe that everyone has choices.
My answer was to protect myself - by distancing and detaching and continuing to forgive. My father could have made different choices too, which would have been better for us all. He bore some responsibility, it wasn't all mother.
All of this to say I believe healing is possible.
Father God, I pray for the removal of all toxic effects from Lea, from the very soles of her feet to the tips of the topmost hair on her head, that have accumulated over time due to everything from family hurts/dysfunction to the latest cancer and side effect treatments. Father remove all these ill effects that are plaguing our dear sister, restore to her the joy of her salvation, and to her health as you formed her in her mother's womb. I ask these thing in the mighty name of Jesus, to whom all knees shall bow. He is most beautiful, a rose of Sharon, a lily of the valleys, the hope of us all, the way, the truth and the life.
GG.....if you have Google Lens on your phone, take a photo of an item you'd like info on, in Google Lens, and let the app do the research for you. Or search out SOLD listings in eBay. Estate sales are fun and it's always great to go out with a friend who wants to learn the tricks of the trade. I taught my daughter in law and now her entire basement is filled with........LEGOS. Yep. Betcha thought I was gonna say Cool ANTIQUES or Vintage Beauties. Nope. Legos. She went crazy collecting Legos in all sizes and shapes and now has SO MANY it's insane. I know there's a lot of value there bc she has old pieces and discontinued hard to find lots.....but to me it's boring. Lol. I look for the oddities like vintage art supplies I pay $4 for that fetch $225. But hey, if DIL can make a killing on Legos, God bless her.
I’m glad at least that the silly steroids have eased up on your emotions!
Enjoy that lovely night weather. That sure is something I miss about Buffalo, this time of year!
Hugs from FL!
Geaton - thx for the reminder of the Ancient Mariner. It's one I studied and I loved that poem.
Wow what a dream, Lea. It surely is symbolic of something good. When I was young I used to dream that I could fly. It was so real. I think it represented being free of the family dysfunction. Over the years I got freer and freer and dreamt it less and less. Yes, pray to get back to estate sales. I'm with you on that one. They were so good for you. I wonder if you still have some pain/hurt inside about your mother spewing venom at your father. I always think dreams have a reason. These toxic family members of ours do a big number on us and we need to heal from them. So glad the crying jags have dried up. That's a good sign in terms of less prednisone in your body.
Sorry about the pea soup. I know you were looking forward to it. He'll do better next time. R takes input well about many things but not about cooking.. He was convinced the frozen turkey would cook in 3 1/2 hours and I couldn't tell him different. I know my oven!!! If it had been my old stove it would have cooked in that time. It was a very fast oven. This stove has a slow oven So dd and family sat at the table while he discovered it was not done. We ate vegetables. I don't think he ever offered to cook another meal. lol and that's ok. Family stories! I did it once too to a friend years ago. Thought I had set up the oven right and discovered at meal time I hadn't. Ooops! 😋
For me 67 degrees is about right We still go down to about 50 (10C) at night.
Golden girl......last night I dreamt I was walking/ feeling normal again and driving my car! I also dreamt my mother was on the phone spewing venom about my father, so 1 out of 2 ain't bad, huh? 😂 I think I will pray to get back to estate sales again, why not? It's been a fun source of income and amusement for me for 18 years now. Amen. And I find myself generally in good spirits.....especially since I'm down to 30mgs of the poisonous prednisone and all those crying jags have dried up, TG.
Woke up to it being 67 degrees in the house in June! Good thing old Chef Chuck screwed up our pea soup yesterday and it won't be ready till tonight! He put TWO 48oz boxes of broth into the crock pot instead of one.....so it didn't cook properly and was way too watery. Chuck has a tendency to either cook something beautifully or horribly, nothing in between lol.
A blessing for tonight - Numbers 6:24-26
“The Lord bless you and keep you;
the Lord make his face shine on you
and be gracious to you;
the Lord turn his face toward you
and give you peace.
Maybe its time to pray that you can get out there to some estate sales again. Sounds like fun!
Those immunotherapy side effects are a b*itch.
It was thoughtful of your friend to send a gift card to that restaurant. Pea soup is awesome!!!
Have a good night!
Hi Send 😁
Cx, ty for your continued prsyers
Sp, hindsight is always 20:20 but if I knew then what I know now, I'd have only taken ONE immunotherapy treatment instead of two. I believe the first ipi/nivo treatment is what killed the cancer, and it was the second one that screwed up my CNS. I'm not going to address the "rehab" matter again, it's beating a dead horse. I DO hear a LOT about side effects from immunotherapy on the FB group I belong to. Stage 4 metastatic melanoma stories. Horrible stories there.......mind boggling. Not many escape the immunotherapy side effects, everyone gets SOMETHING they have to suffer with at some point, some permanently. Much worse than chemo bc the docs know how to treat chemo side effects, but immunotherapy is the great unknown. Ulcerative colitis is the big side effect, but there are TONS of other horrible ones that can permanently disable or kill you. Many people have had crainiotomy surgeries leaving them disabled (I'd draw the line there) and others have chosen so many treatments that they have no QOL at all. The truth with stage 4 melanoma is we're just buying TIME, not a cure. So for me, I realize that and won't take SO many treatments that I'll die from them vs the cancer. If I have to do clinical trials if the cancer returns, I'll think long and hard first.
Ty Ty......😁RD...ty. I wish we could get together to discuss fun things too. Like vintage jewelry and collecting junk. Sigh. It's been 5 months since I've even sorted thru any junk! I'm jonesing to do that. One of my estate sale owner friends sends me photos on my phone of Hattie Carnegie jewelry she finds in case I want to buy it. I want to find it myself! 😑
My bff sent us a gift card to a great restaurant so we ordered takeout last night. It was very nice. Pea soup aroma is now filling up the house as I type. As thunder pounds outside, yet again 🙄
Boy the new irritation on this site of lumping paragraphs together is FUN, huh?
If you knew this would happen do you think you would have decided not to have the immunotherapy?
I've been reading up on it and it looks like it's not as benign a treatment as it seems.
I often wonder what's going to take me out and how much risk I am willing to take to keep living if I get cancer. I know my husband because his body is so sensitive wouldn't be able to do the treatments. Even chemo can cause this stuff.
You never hear anyone talk about how their cancer was cured but the side effects messed up their life and they regret doing the treatments.
Just read your post to Golden about how you are feeling worse now than in the beginning of this mess.
My MIL would often say that she felt fine when she was diagnosed with her Non Hodgkin’s Lymphoma. In fact, she was traveling, when she discovered her lump while showering. She said that she never felt better in her life.
Yes, the cancer treatment knocked her for a loop! After she went into remission and was dealing with withdrawal symptoms, she said that was when she felt absolutely horrible.
I feel for you and hope that you start to feel better soon. It takes time and while I know that you are extremely grateful for being cancer free, I bet you are so sick of feeling crappy and looking forward to a normal day. It doesn’t have to be a great day, just a nice normal day.
According to the chart, 2 ipi/Nivo (That was my immunotherapy treatments) users were hit with audiovestibular toxicity reactions., both resolved with short term prednisone, unlike me. One had a different treatment Solumedrol, 1 mg/kg x3 days (IV) along with the prednisone which I did not. 1 guy of the 4 is the same and the other dead of the disease. According to my docs, prednisolone/solumedrol is IV prednisone and no difference .... I did ask about that when I first read of it being used as a tx.
I'll check out ENT PT at some point, who's already said they can't help me...2 different groups....but I plan to ask if they'll try. What have I got to lose at this point? I suppose they can make me worse....idk.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9138419/
Apparently rehab exercises, etc. CAN be helpful.
(((Hugs)))