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.
The wreath is gorgeous, what a talent you have!
Btw, out of 7 kids between us (2 me and 5 Chuck), 4.5 are loving and kind. The .5 is up and down/in and out at any given time, thus rating a half.
Today this scripture spoke to me -
Commit your way to the LORD; trust in him, and he will act.”
Psalm 37:5
Amen and amen.
Praying fir a better day for you, Lea, relief frim the back pain and from the effects of decreasing thee prednisone. Also, of course for a clear PET scan.
May God give you wisdom re the IVIG. Hard to go through that when you don't see any positive results.
"Eat glitter for breakfast and shine all day" ✨✨✨
"Thank you for responding to me;
you’ve truly become my salvation!
...This is God’s work.
We rub our eyes — we can hardly believe it!
This is the very day God acted —
let’s celebrate and be festive!"
- Psalm 118:24 (The Message)
Tomorrow at 12noon is my PET scan and I'm hoping my glucose is under 200 ( required in order to proceed since glucose is used in iv) and prednisone screws with blood sugar, and that the lab person can find a usable vein to put the IV line in ( again thanks to hi dose steroids). Once the results are in, THEN the next steps of treatment or no treatment can be determined. There is a clinical trial set to start next week at UCHEALTH that I qualify for bc I have the required melanoma mutation, we just don't know yet IF treatment is required right now. Remission may be at play here, with God's help.
Fg, I'm of the praying breed and have been doing a lot of it lately, especially during my wide awake periods between 1/2 am and 6 am each night. 😣
Ty, GBG does not fall into the 4.5 category, nope. I'm sure they'll show up here later on at some point, though. It's still early.
The DD who lives here 75 min away is one and hasn't seen her dad in over 1 yr nor spoken to me at all in since chewing me out on mother's day last year when Chuck was rushed back to the hospital for a 2nd surgery. Her petty issues keep interfering w our life and death situations, we have to remember. She's this-close to having done irreparable damage to her relationship with her father now, and has already done so with me and my DD, her step sister. Oh well, poor choices often have poor consequences. And to think ALL this started over covid jabs bc Mayo required us to have them, and since she and her child didn't, Mayo said they couldn't stay here at our house as guests. Which "hurt her feelings" the new buzz words of the times. Nevermind they stayed at her brothers home and we visited with them a lot in spite of it all. Then she was jelly that my DD came to AZ with us as "NOT A MAYO NURSE" to help out, when she was issued an invite to come herself but refused. I myself held out the proverbial olive branch to her 5x or more over the past year, just to have it thrown in my face how they "were unwelcome in my home" due to vax status, so why is it ok now to visit? How do YOU spell dense? If Mayo told us to dance around naked in public doing the samba at the mall in order for Chuck to qualify for a liver transplant, we'd have done THAT, too! 😑 The procedure saved her father's LIFE, HELLO?? But let's dwell on Hurt Feelings for over a year, shall we?
Anyway, she can kiss my grits it's just that she hurts Chuck so badly in HIS time of need. That's the part which bothers me so much since he's already in such a stressful situation. It boggles my mind when family members can be so cruel.
Geaton, ty for posting the scripture du jour so faithfully.
Golden, I choked a lil on that glitter this morning as I sprinkled it on my English muffin.....😂
Gershun, what did the MRI reveal, anything?
Thanks for the nice words about my jewelry wreath. The pieces are fun to make and now I'll have to look thru the hoard to sort out items for the bridal bouquet for DD. They're not yet engaged but have moved in together in Jan. The plans are in the works which is exciting.
My dizziness today seems better so I'm going with it and feeling grateful for ANY TINY REPRIEVE IN SYMPTOMS. Tomorrow is 11 weeks of this nonsense.
To all I have not mentioned specifically, ty for being part of this thread. You are valued and appreciated by moi.
Be back later.
It’s wonderful to see you posting again and reading your words. You were never out of our thoughts though, even when you weren’t able to post.
I’ll be praying with you for the very best news concerning your PET scan.
As always, I send you all my love and best wishes. Also, lots of hugs!
Know that you are an inspiration to all of us.
The title of it is "Trusting God With the Outcome." That alone says it all.
The Bible verse is Psalm 37:5...."Commit your way to to the Lord; trust in Him, and He will act." This commitment is a trust in Yahweh, not ourselves, to produce the outcome. We provide a surrendered heart, and God provides the outcome of our stories.
"Letting go and letting God" is difficult, but the good news is that surrender brings more freedom, purpose and fulfillment than striving and controlling ever could.
Because God created us and loves us, we can trust that He has a better outcome for our lives than we could ever imagine. Because God knows all and sees all, we can trust that even if our stories don't turn out the way we originally thought, He is a redeemer who works all for our good and His glory(Romans 8:28).
We are safe in surrendering it all to Him, and we are free not to have it all under control because we serve a God who does.
So I'm joining other fellow believers on here in lifting you up in prayer for your appointment tomorrow, and we are trusting that God will act on your behalf, and that He will continue to write a beautiful story for your life.
Lord help Lealonnie to trust You even in the unknown and help her to walk in faith, even when she can't see. In Jesus' name, Amen.
Praying here for tomorrow.
I’m with you in the Funky Veins Club. Once, for a contrast MRI, three techs each tried two times. All unsuccessfully. After those 6 painful sticks, they gave up, and the doc never got his contrast report. 😣
Techs usually don’t believe me when I tell them where IVs work and don’t work. 🤦🏻♀️
So, all that to say, that I can pray with great understanding that you will have an easy, breezy time starting that PET scan. 😃
We are having a small service for my mother this Saturday. My children will be here and one local relative but that's it. We are filming it for family across the country. I was told that it was discovered that she had passed when a nurse went into her room for her very late night dose of pain medication. Somehow that makes me feel that she went in her sleep and likely not aware she was on the verge of dying
I too along with so many others will be hoping for positive news for you. I too (alot of too's but it is what keeps coming to my mind) also find the bags of food story awfully amazing. You both deserve much better. Hope you have a good night if that's at all possible. You are truly very special.
You and your mom will be in my thoughts and prayers this Saturday as you have the memorial service for her. As for my own mother, I'm relieved her suffering is over, that she blessedly passed in her sleep w/o a clue of what was happening until she was enveloped in pure love, light, and no more earthly pain ever again. Amen.
I am bringing my tablet along to the PET scan tomorrow so I'll post while I lounge on the recliner for 90 min. I actually have a good feeling about the results based on having so little pain and a weight gain, appetite rebound, good blood test numbers, etc.
The silly thing about the spine surgery is that I'm even further restricted in BLTs......bending, lifting and twisting.....for 2 weeks! So butterfingers here is dropping everything I touch putting the grabber thingy to work quite a bit. Except for the dang phone which I've dropped at least 50x so far and Chuck has to be the grabber thingy for me. 🙄
Its storming and hailing here today.......my DIL got word the stepfamily MAY be returning to Denver tonight. She said to pls do so by 7pm or else "the inn is closed for the evening". Good on HER. But this leaves me wondering if they'll plan to show up HERE tonight or worse yet, tomorrow morning before we leave for the scan. Chuck texted her at 10 am asking for plans and she said she "may drive to Denver alone" which did not happen. Then she ghosted him ever since. Disrespectful behavior at its worst.
I'll be back tomorrow. Have a great evening all! 😘
Sparkle like your beautiful wreath this morning. 🎇🌟🎇.
“Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, when my heart is overwhelmed; lead me to the rock that is higher than I. Psalm 61:1
This morning I was delighted to find it had rained overnight (after many days of hopeful but erroneous weather predicting... and we need the rain).
It's a sweet thought to know that even God experiences delight: in people and actions and results. I'm praying that LL will experience delight starting today. And for her to remember that "mercy is [His] specialty".
"Where is the god who can compare with you —
wiping the slate clean of guilt,
Turning a blind eye, a deaf ear,
to the past sins of your purged and precious people?
You don’t nurse your anger and don’t stay angry long,
for mercy is your specialty. That’s what you love most.
And compassion is on its way to us."
- Micah 7:18-20 (The Message)
Sitting in this recliner after the meds were injected. Drove in a huge downpour to get here after an UGLY morning thanks to more b.s from the stepfamily and Chuck. 😑 He comes into my room at 9:05 after I'd achieved a relaxed state of mind, to announce the stepfamily would try to arrive at our home by 9:30. I was like WHAT??????? I'd told them all the PET scan was this morning and due to stress, no company please. So I said "now I'm supposed to jump up, get dressed and ready to visit in 20 minutes?" Chuck yells JUST DON'T BOTHER, turns and walks off slamming my door! I really felt like my head was going to explode at that moment.
I got right on my walker and hightailed it into the kitchen for a showdown. Dizzy as hell and my back aching like mad. Chuck is throwing stuff around, having a meltdown, saying everything he does is wrong and playing the old I'm A POS Card he plays soooo well. And often. I told him his DAUGHTER is doing everything wrong fgs and just tell her NO. Which he did. So idk if they're coming later or what, and I don't care, but I'm fed up with all this crap and Chucks behavior in general lately. I've bent over backwards to thank him for every thing he does, to not complain, to not point out imperfections, to respect him.....but he's turned into an angry and resentful person now about the burden I've become to him over the past few months. With no end in sight, either! The worst case scenario is playing out. Nobody should have to be a caregiver of this caliber, I know that. But I hope this hideous situation w the dizziness resolves itself at some point to release BOTH of us from this situation. Or he'll wind up hating me and that's worse than cancer killing me.
I've been walking around on eggshells at home so I dont set him off, trying to keep MYSELF together at the same time too, which is not easy. I'm watching him go from a happy easy going person into a bitter one who never laughs anymore. Yeah, this has been hard for both of us, no doubt, but me trying to manage his meltdowns on top of my own issues is beginning to make me question everything right now.
We will see what this scan shows and go from there.
I pray for some good news we both need ...some hope, I guess. Stress is a killer of a thing. Add in clueless and disrespectful visitors into the mix and voila, a big mess ensues.
I'll update when the results come in.
I get it, I hear you. I understand.
It's all too hard on both you and Chuck.
Add "visitors", and it is a recipe for stress.
You are under no obligation to see or entertain anyone.
Is it perhaps time to call in a temporary caregiver?
Just get today done, it's all you can do, and that is okay.
Stay the course.
Don't allow the impossible times to sway you.
That is where God has a plan for you.
coming, idk . And you can limit visitors as you wish . Just trying to help . 🫤🤷♀️
I'm wondering if you can get some help in and maybe send Chuck to a hotel for some R and R for a few days?
Do you have a SW attached to your oncology team who can suggest a way of de-stressing this situation?
You guys have had more trials than Job in the last 18 months.
Praying for peace of mind; healing of body and spirit for you both today.