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.
May God grant this request.
And give you relief.
And those dang docs some WISDOM, already.
Big, but gentle hugs to you.
I don’t blame you one bit for not sugar coating anything. I despise a ‘Pollyanna’ attitude.
I agree with you about not caring what color your eyelashes are at this point.
Sp, you and I are of the same mindset: you can sugar coat a turd but it's still a turd. As a New Yorker born and bred, I sugar coat NOTHING. 😁 I wish you could give me some of your life force too, I could use some more piss & vinegar these days.
Way, oh I WILL spend time with my family this Christmas if I have to crawl into the family room on all fours. We're making Fra Diavolo with fish on Christmas Eve bc DDs fiance the cop is working and she'll be alone. Chuck will cook of course, but hes happy to do it.
NHWM, every year I say I hope the new year will be better, and every year (since 2019) has been markedly worse. This year I'm saying NOTHING so I don't jinx things even more 😁 I'll be grateful to make it to 2024 and then to my DDs wedding on Nov 4. She's getting my hair and makeup done so I hope my eyes are cleared up so my pure WHITE eyelashes can be mascara-ed up for once. My hairdresser was saying "oh you poor thing" about my lashes and brows and I laughed to myself.....honey, those are the LEAST of my problems, if you only knew.
DD the RN called last night and thinks Dr C was mistaken to cut the IVIG dose in half and that's what my body is responding to. If I never hear those initials IVIG AGAIN it'll be a day too soon. Potions and guesswork and "stabbing in the dark" is ENOUGH already. She also said she and her fiance are coming over to help Chuck put up the giant Christmas tree and ton of ornaments this year! Thank God for family.
You are an inspiration to me because you keep fighting against all these issues that come up. And you dont sugar coat any of what you are going through.
I wish I could give you some of my life force so you could beat these side effects from the immunotherapy.
I don't even know what to say anymore except I'll pray and pray and pray for you even harder.
(((Lea)))
Sorry for the step backwards. I truly hope you are able to feel up to spending holiday time with your family . (((Hugs)))
And don't get me started on the runaround you're getting with your eye issue. I know you're beyond frustrated as are we all on here for you, as we care about you and want only Gods best for you.
While I do pray for you and your healing every day, I feel like I need to kick it up a notch and I will, and I'm believing others on here will join me in praying with fervor for your total and complete healing once and for all as this has gone on way too long already.
I can’t imagine how hard this must be for you. Lady, you have been through hell and back with your cancer and so many other complications. My heart truly goes out to you!
I certainly hope that 2024 will be a turning point in your life. As always, I wish you peace as you continue on in this challenging journey.
Sending a bazillion hugs your way!
He referred me to a real Opthamologist who's supposed to call me w/i 2 weeks. Online, I could only get an appointment for Feb 14. While optometrist says it's not an emergency, he's out of his realm here! He diagnosed the condition as Iritis but I believe it to be Uveitis which is more common with cancer treatments. If so, other treatments/meds are normally required in addition to steroid eye drops to clear the issue. Ugh. I guess it's my own fault I didn't ask more specific questions when I FIRST met this man for the floater situation I developed from that Skyrizi infusion I had in March. Which STILL hasn't gone away, btw. I believe all the prednisone I was taking orally for 6 months kept the inflammation in my eyes at bay. Once they were discontinued, THATS when the eye symptoms became unbearable. I will NOT GO BACK ON PREDNISONE. My vision has gone from 20:30 to 20:60 recently 😑
My dizziness/vertigo is much worse the past nearly 2 weeks since I had another scheduled half dose IVIG 11 days ago. My head is extremely heavy again, which is tough to deal with since I haven't had to for MONTHS now. I emailed Dr C to tell him I'm formally DONE with IVIGs and or all other treatments moving forward and only pray to God this last infusion didn't create permanent damage of some kind.
It's very depressing to go from good activity back to being chair bound again after nearly 10 months of this crap. To be able to go to 3 estate sales every Thurs and Fri to being too dizzy and unbalanced to go to ANY. And worst of ALL, to have no medical direction on ANY OF THIS due to them not knowing HOW to treat the side effect and then sending me to unqualified vision doctors instead of eye specialists.
Just venting. I should've stopped the damned IVIGs but then we felt I was able to get up and about after the one in late October so maybe it DID help, blah blah. Grasping at straws wound up setting me back, right at Christmas and now I'm too debilitated to set up a 9' tree. God give me strength.
Honey cinnamon was the last one, for the last pieces of pie and it was amazing. I highly recommend it.
Have a wonderful day . . . or week . . . until I check in again.
💃🕺💃🕺💃💃
Chuck’s daughter is blessed to have a caring dad who cares about his grandchild. It does seem like she would have taken her child to the pediatrician. She is most certainly self centered since she made sure that she took herself to the doctor but not her child. Interesting…😏
My word! Did Chuck’s daughter tell him how his grandchild was after her fall? Geeeeeez! I am glad that neither of them were hurt badly.
You’re right, some recipes are much better than others. We all have our favorites. I have tried new recipes that I have loved and others that I didn’t like so much.
*Narcs: yes narc is a very overused word around here. But my SD AND her DH are both narcs to the nth degree. It's scary. When Chuck told her the only way to POSSIBLY repair the relationship w me and my DD would be for her to apologize to us, she laughed out loud and said WE should apologize to HER. This from the "family member" who's ignored me and her step sister since my cancer dx and stressed us out to the max while we were taking care of HER FATHER in AZ for 7 weeks during his liver t/p.
Funky, so glad your trip was awesome! 😍 TY for your prayers on my behalf.
ITRR, your pies sound divine, I love pumpkin anything.
Nhwm, we had some snow on TG night and into Fri and Sat. I can live w/o it so you're welcome to it.
Llama, happy to know your TG was great!
The other good news on my end is the startle reflex (Me jumping at noises) is GONE! Thank God too bc it was a terrible thing to deal with for 8+ months.
Your pies sound divine! You’re an excellent cook.
Geaton, LOL, love your comment about sending Lea’s stepdaughter the pies to receive her just desserts!
Funky,
So happy that you enjoyed the beach! We went to the beach once on Thanksgiving weekend. It was delightful!
I keep saying that I want to go away for a ‘white’ Christmas holiday somewhere.
The kind of Christmas that is pictured on a Christmas card would be so pretty to see! Snow everywhere.
Where I live we are usually wearing shorts to pick out a Christmas tree and instead of coming home to hot cocoa, we are drinking ice tea!
I always make pumpkin pies from scratch, just over the top yummy.
1 pie pumpkin makes 2 9" deep dish pies, lots of pie.
This year I decided that I would make the whip cream for each piece. We had brandy vanilla whipped cream (i make vanilla using Christian brothers brandy as my base), maple whipped cream (real Vermont maple syrup), allspice vanilla whipped cream, fresh grated nutmeg whipped cream and regular whipped cream. Mixed it up for scrumptious desserts ALL weekend. I think I will start a new tradition it was all so delish!
So happy I remembered to set my scale back 15#s for the holidays :-)
God is good all the time! It sounds like you were blessed exceeding abundantly this Thanksgiving. Praise The Lord!!!!
My trip to the beach was everything I needed and wanted it to be. The condo I stayed in was oceanfront and the weather for the most part was great for November with temps in the 60's and low 70's. I actually didn't have to turn on the heat until Friday.
But most importantly I was able to just be still in the presence of God and not only enjoy the beauty of His creation, but also hear from Him through His word, dreams and praise music.
It was such a time of refreshing and renewing and I HIGHLY recommend it to anyone who just needs a reset in their life.
It's amazing how much more clearly we can hear the voice of God when we remove all the daily distractions and responsibilities from our lives and just sit in His presence.
I continue to pray for you daily and know that God isn't done with you yet.
Blessings to you and yours,
p.s. send those sad pies to step-d so she can have her just desserts
Too funny about Chuck’s pies! We have all screwed up something in the kitchen before.
I have a habit of putting something in the back of the fridge and forgetting to serve it!
I hope your day turned out well and the "loved ones" didn't drive you too crazy! My misery-ridden stepdaughter wasn't even invited bc she doesn't speak to 4 family members out of 10 (2 of the 12 were kids) so that insured a good time!
Funkygrandma, how was your trip to the beach?