
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.
cx - you are the one with paresthesia -right? A lot of this is typical cfs/fm. They don't know why or how or what to do about it.
I've had it for 30+ years and you don't necessarily get worse. I'm better than was when I first got it. Right now I've had to take a bit of a break as it's flaring up but still not as bad as it was at the start.
Lea. I expect some of what you are going through is made worse by fm. When you mention having to rest after an outing. Yes!!! If you have fm you already had brain inflammation going into the treatment.
Anyway, just to say all the golden girls and especially you, Lea, are on my mind and in my heart even when I am not posting. (((((hugs))))) and some glitter!
Cxmoody, who can better understand these afflictions better than those of us who are afflicted with the damn things, eh?
Just sitting around on my recliner today feeling lousy, basically. But not in bed anyway. Yahoo. 😊
my dad used to reach out to me a lot!!!
maybe I was too close to mom… I don’t hear her much..
she was talking to me when she was dying.. I went home for a bit watered the lemon tree she gave me years ago..
I answered her out loud.. ok mom, let me finish watering .. I’ll be right there.
my brother was texting me. My cell was in my car.. I got th her in 2 minutes..
the nurse was logging in the time of death as I walked in..
i know she left when she was “talking” to me…
"The misophonia thing people seem to find funny or stupid or ridiculous, not realizing the level of aggravation it causes us. "As if" we wouldn't turn the damn thing OFF if it was within our power to????? Oh yah baby, I just LOVE feeling outraged when hearing you chew, what FUN! 🙄 Its way more than a "pet peeve" when it triggers a physical reaction in ones body to hear certain sounds! So we can be laughed at or "driven crazy" by our loved ones till the cows come home but what I wish is FOR THEM to be saddled with this chit for ONE WEEKEND and we'll see who's annoyed or laughing or being driven crazy THEN!"
And, girl, I am praying for those dang steroids to give you a break.
You are treasured here. Thank you for letting us share this journey with you.
Please Jesus, your precious servant Lealonnie has had enough. Please remove all of these negative side effects sooner than later. Thank you Jesus.
"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." Hebrews 4:16
Father God, I pray for mercy and grace for Lea in her times of trial. Touch her and heal her, as only you can. I ask this is Jesus name.
Screaming and tears are healing, and so very understandable.
Do what you need to do to get through this amazingly difficult time.
Sending support your way Lea.
You have had more than your share to contend with. You have to be completely drained from this ongoing crap.
Sending many hugs your way and extra prayers will be sent up to God asking for His mercy to grant you some much needed relief.
I wish I knew something that I could say that would comfort you but I know that there aren’t any words to make your situation any better.
I won’t try to pretend that I know how you feel because I haven’t experienced any of what you are going through.
I do have empathy for you though and I hope that you will start to feel better very, very soon.
I also know that you are a no nonsense woman who wouldn’t be complaining if you weren’t struggling with this misophonia.
Anyone who truly knows you will not doubt your word, or think the situation is ridiculous or funny.
Sending a bazillion hugs your way!
The misophonia thing people seem to find funny or stupid or ridiculous, not realizing the level of aggravation it causes us. "As if" we wouldn't turn the damn thing OFF if it was within our power to????? Oh yah baby, I just LOVE feeling outraged when hearing you chew, what FUN! 🙄 Its way more than a "pet peeve" when it triggers a physical reaction in ones body to hear certain sounds! So we can be laughed at or "driven crazy" by our loved ones till the cows come home but what I wish is FOR THEM to be saddled with this chit for ONE WEEKEND and we'll see who's annoyed or laughing or being driven crazy THEN!
“Plans -what are plans? lol. Day by day I go with what I can do. These days I have to be careful. It doesn't take much but the stress of normal life to set off the fatigue, sore throats, muscle pain, brain fog etc.”
This. Is. Me!
I’ve never seen it written out like that! I haven’t joined any groups for FM, cause I don’t even want to KNOW how things could end up.
I can do ONE thing a day, outside of the house, and I am done. Afternoon? Nope! I’m out. 🤦🏻♀️
Anyway, nice to read about someone who GETS it.
LL-my misophonia makes my family crazy. Too bad. It’s either “Close your mouth when you eat!” and “Use headphones for your tablet, if you already have the tv on.”, or this Mama will run screaming from the house! 🤪
I’m still praying for you, girl!
And I'm also not surprised to see there's no cure but "counseling" meaning it's the Suck It Up And Learn to Live With It Buttercup Program I've become familiar with lately. Ugh. Again, there seems to be more I Don't Know answers in the medical field these days than anything else, especially when it pertains to ME.
I'm off to take my lower dose prednisone now and pray for a milder reaction. And no need for my walker. It's a rainy day today which normally makes me even dizzier....but not today. So I'm calling for a GOOD DAY TODAY! 😁
Golden, part of my Return to Normal program is picking up a Swiffer...and a rag to clean a little. Telling my brain I'M NOT GONNA TAKE THIS CHIT. I'M GONNA LIVE MY LIFE NO MATTER WHAT MY BODY THROWS AT ME. Seems like when I fight is when I start to turn a corner. That's my prayer. A nebulizer is a machine you breathe into with a hose you put in your mouth. The meds go into a chamber, water in the tank, and a breathing treatment is administered thru the machine. An EXCELLENT way to get immediate relief from lung issues.
Send, ty for the song!
In your hurting, in your sorrow
I will ask my God to move
I speak His name 'cause it's what He's asked me to do
In His promise, I will seek Him, Jesus
And pray to Him for you
I pray for your healing
That circumstances would change
I pray that the fear inside would flee in Jesus name
I pray that a breakthrough would happen today
I pray miracles over your life in Jesus name, in Jesus name
I speak the name of all authority
Declaring blessings, every promise
He is faithful to keep
I speak the name no grave could ever hold
He is greater, He is stronger
He's the God of possible
I pray for your healing
I pray miracles over your life in Jesus name
In Jesus name
In the mighty name of Jesus, all things are possible
I pray for your healing
I pray that you can receive it
In Jesus name.
Source: Musixmatch/Edit
I hear you about things left undone. Have you thought of a check list for them. I am really into lists. I am amazed with your health issues that you can even dust the dining room table!
Being more active helps. Good for you!!! I think you can retrain your brain in many ways. Retrain it, and calm it down!!!
Wow - adjusting to the dizziness must be a big challenge! But if anyone can do it, you can.
Thx re R. Don't know what he has for his bronchitis. I'll find out later. He's not good with that kind of stuff (describing it to me); It's working but he still is having coughing spells.
Barb - thx for that link. I know my issues are CFS/FM related but new information is always good. From it I found a You Tube video of soothing sounds that I like. Rain, thunder and a crackling fire!!! Brings back wonderful memories.
Have a good day, Lea - as good as you can. you are a survivor!!!
Prayers always and ongoing.
“There is a time for everything, and a season for every activity under the heavens …” Ecclesiastes 3:1
We may not like all the seasons in our lives, but God has a plan and a purpose in them.
https://www.soundrelief.com/hyperacusis/
I don't envy you moving bc it's such a huge job. Once you're on the other side of it and settled in the condo, I'm sure you'll be happy and more relaxed in general. Don't overdo it.....so not worth the suffering. Does R have a nebulizer for his asthma and wheezing w the bronchitis? There was a time I had to neb 3x a night! Asthma can get out of hand very fast, so it's always good to have emergency supplies (Like a nebulizer) on hand if needed. I HATE asthma. I hope his bronchitis resolves w/o further suffering.
Thank you for your kind words which I appreciate.
I read the Feb update and responded at the time. @lea still wishing you a full recovery from all the therapy around the beauty spot. There may have been further updates and your therapy maybe over. I think I missed those posts.
I read you're feeling dizzy, I guess this is from some form of medication you're on. wishing for it to get better and go away.
@needs I concur the spinning around like a top as kids, I haven't tried it for at least 40 years I think. I might try just to see if it invoke an memories, I hear balancing exercises are to be practices more as we age. If you balance on one leg, with your eyes open it's fine for most people, as soon as you close your eyes, you completely lose your balance.
best wishes @lealonnie1 wishing you continually get better, keep that dime with you always.
That misohonia sounds awful and like something I read about in that same article actually - the triggering of emotions by something "normal". How dreadful for you. Not something I have though I am sensitive to sounds and light. Right now I can't even listen to my fave music. I NEED silence. ADHD - my family is riddled with it.
Good luck going without the walker. I understand your reasoning. That's embracing the new norm! I hope the smaller steps tapering off prednisone help.
Plans -what are plans? lol. Day by day I go with what I can do. These days I have to be careful. It doesn't take much but the stress of normal life to set off the fatigue, sore throats, muscle pain, brain fog etc. What's new? I have some online banking to do. I know exactly what I have to do but my brain is saying, "Nope, take a nap!" I am usually better in the later afternoons so I take it easy until then. No appointments before 2 pm.
I filled up some bags of clothing for the thrift shop yesterday. Taking them down is another job. I do a mental check over the week - if the plants are watered, the cat litter box clean enough, my laundry done, (more or less), there is food in the fridge, supplements in their reminder containers, I am bathed, etc., bathrooms and kitchen are acceptable, floors reasonable, the lawns watered, and I have made a little (or more) progress with the move, I am satisfied. Oh, and the banking and any other business looked after, and a visit to dd. That pretty well takes up most of my energy. Week-ends, week days - all the same to me.
Some days it's just hang in there till the brain fog etc. clears and see if I can get something done. I have learned that doing things in small steps still gets them done eventually. I am hoping once I am settled in the condo I will have more time for - ???? - other things. The challenge right now is to get there without making myself sicker.
I do plan on getting a housekeeper once I am in the condo. I have earned that!!!! 😁😁😁
So I've decided to quit using my walker UNLESS I'm having a horrible day titration wise. I think my weird oddly wired brain needs to adjust to this dizziness as its new norm for now w/o relying on a walker. I'll still bring it in the shower bc it's too dangerous not to....I need something to lean on getting in and out. So it's scary to watch me walk, basically, but I'm walking unassisted. Tomorrow I go down to 35mgs of prednisone (I'm doing the 5mg instead of 10 plan) so the walker will likely come out again....but that's ok. One day at a time.
Whats on your agenda for the weekend? Nothing for us. I have my housekeepers here today which is always a bonus and Chuck is not allowed to cook on Keep The House Clean Day. 😂🤣😃