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.
Alas. I hear WAY more than I want to, so no hearing aids for me!
Glad you are up to such a long update this a.m. Lea, and am so struck by the fact that you now hear all about brain zaps and taps, but NOT hearing you mention pains.
To me that has to mean something? Maybe I am just choosing hope.
Mr. N. goes on Wed. for eye "procedure"--read bubble inserted with a NEEDLE into the eye. Another small retinal tear. His last was decades ago, and quite large. Not much I can do about any of this but sit with it and think of horror shows involving eyes, a true phobia for me. They can mess with anything on me, needle me to death, but NOT MY EYES.
As to lumbar puncture, yours is being done so they aren't going to be fishing around for the right spot. Do try to take in fluid after as it will help with the headache. Stay flat long as they tell you and then some if you can tolerate it. You CAN ask for a pre med or pre procedure sedative; I would, myself. Snow yourself and sleep it off. Remind me again what day the LP happens?
Good good good to hear from you, and to imagine you tomorrow seeing the grandchild.
My dear father had 20 or more eye surgeries for glaucoma and endured each one even WITH my mother going berserk next to him. Stupid how SHE needed the Xanax while HE was being stuck w needles in his eye. He never lost vision or had bad side effects from those surgeries so wishing N the best of luck with his procedures.
LP hasn't been scheduled yet,,,,,referral wasn't in the system by 5 pm on Fri so I'll call Monday.
The 3 of us, me Chuck and all the floaters are getting dressed and Faking it Till We Feel it by going to see our 2 yo grandson shortly. I will even wear a few pieces of my ridiculously enormous jewelry collection ( mostly costume from years of estate sales) and NOT remove 1 piece before taking off! Who suggested such nonsense anyway, Coco Chanel?
If my grandson is in a screeching mood, my hearing loss will come in handy. God doesn't give us more than we can handle, right? 😁
I hope you all have a beautiful spring day today and that I have more good things to share later on.
Have a beautiful day, Lea.
I know that you will look lovely with your estate sale accessories completing your outfit.
My daughters always commented on how stylish my mother dressed. She loved her accessories too.
Often times, my mom was way more stylish than I was. I was too exhausted to care about being stylish.
So glad that you were able to take a short stroll with your walker.
Have a wonderful time with your grandson. He is blessed to have you as his grandma!
I thank you for your help, your cheering me on, your adamant refusal to shrink back from the reality here, while focusing on the miracles that ARE happening in spite of the setbacks. And reminding me that God has my back.
As I've said and will continue to say, AIN'T NO EFFIN BEAUTY MARK GONNA BRING ME DOWN! 😁😘😙😚
This event is part of my journey for some reason, and I accept the challenge. It won't be w/o crying jags, meltdowns, getting super ticked off at docs who show little compassion, w/o sleepless nights second guessing myself and each decision I've made thus far, though. That too is part of my journey and I'd like to think something positive will rise up out of this chaos one day and that dime I originally found on the floor of the ER back in Jan will have been the miraculous good luck charm I saw it as.
Amen.
My grandson was all laughter and light today, truly a gift to revive me He ate 5 meals in a 3 hr period not including a huge breakfast out! I suggested mom get him a growth chart bc oop, here it comes....a GROWTH SPURT 😂🤣
Cxm........ty. I did a few sets of 30 steps today holding the walker up! Yahoooooo!!
NHWM....I put ON another piece of jewelry today for my grandson who expects to see me wearing a long blingy necklace and rings whenever he sees me. Loves it all. I even put on a long silver sweater cardigan w sequins here and there to complete the look. He was blinded by the bling 🤣😂
A FEW TIMES!!!
Such good news!!
Your grandson sounds adorable! I’m sure that he was thrilled to see you.
When my oldest daughter was very young and wasn’t able understand the concept of time, I couldn’t tell her that grandma was coming over in a little while.
If grandma didn’t show up immediately she would start crying and begging to see her.
I had to say things like, at the end of Sesame Street grandma will be here. Or not tell her until I saw the car pulling into my driveway.
I am so glad that you were able to see your precious grandchild. I bet that he loved all of the sparkle and glam!
Now it looks like you are going to a triathalon, and loaded down with the queen's jewels on top of it.
It is so very good to hear of this very good day for you.
I honestly think that there is so much strength and healing in just days without bombardment of testing and treatment.
((HUG))💞
I am taking that as good news.
We are not out here desperately seeking google info on side effects, symptoms, treatments. You hopefully are having another "free-day".
Speaking of which-- those spiders, Lea. Are they nesting on one side or the other if you close your eyes one side at a time, or on both? I am curious.
I have been thinking of you all bejeweled, and thinking of our memories, how they live with us until we ourselves are gone. My Mom and Dad were likely as great a love story as you and your Chuck. They were so in love all their lives. And they always had date nights.
When I was a little one--don't know how young-- and my aunt or a sitter was there, and I was all tucked in bed my mom, a pretty woman in any case, would come sit on the bed to tell me goodnight. She always was dressed so pretty, with her makeup on, and with some piece of costume jewelry that my Dad had brought her home from the big city (Chicago) where he worked. And she always smelled of Tabu. It's such a STRONG memory.
Her favorite film toward the end of her life was Ghost. My Dad was gone, and she loved the story, and the final words about how the love stays. You get to keep the love.
Just thinking of memory and your grandson. I guess 2 year olds don't have much language to gather memories for life. I think we must need language to tell ourselves what we saw. So you better stick around until he talks for certain. So he can file that in his brain.....
I saw a beautiful be-jeweled woman........all aglitter.
How exquisite, what you wrote to RealyReal. How very beautiful.
I hope this is a good day and will check in with you tonight.
My face is now officially a caricature of its former self, thanks to 80 mgs of Pred daily. A boxy thing I've seen before, unfortunately. Idk that my grandson will remember a beautiful woman in his life, but BEJEWELED he will 😂🤣
Im not dissing myself btw about being bloated. Just a journal comment to underline the progression. I feel pretty good today...the dizziness has changed......i can't explain it. Like it's dissipating to a wider region as it lets go of causing that bobble head effect. Not so concentrated in one area I guess. Still walking some w the walker held up.
Off to the Opthamologist now and I will check back in later after I'm cleared for bad things. My cousin Linda has the same floater situation in her eyes after the covid jabs. Two years now she's not driving and the doc says all is well. Sigh.
I'm free now from poking, prodding and dilation of my eyes till Neurology checks me out on Thursday afternoon, phew.
And if you want coincidences? I had it at the same time N. had a retinal detachment about a decade ago. I suddenly said "I am seeing lights and floaters as well!" We couldn't believe it, but that is how we can have something happen when something else is happening and connect the two when in fact it is happenstance.
In any case, mine changed my vision at once and permanently in that eye. It has not got better. They tell me there is scar tissue that happened at the time and that is reason for the change in the right eye. They would not attempt to mess with it UNLESS I ever lose vision in the good left eye. They say it is often not helped and occ. hurt more in messing with it. They actually called mine a vitreous tear if I remember right. So it could be a bit different, but yes, not in the retina.
I have more floaters in my eye on that side and some "visual hallucination" (LOVE the word!) such as black birds flashing by. Ha ha, just as good as spiders I am thinking.
Wow. Glad that there is an answer anyway. I find that the most difficult thing for me now is reading regular print. My eyes try to adapt and adjust to one another in the brain. Not sure the brain is much good anymore either, as proofreading anything I write of late shows.
You are completely correct that the brain adapts when its forced to, and it is quite GOOD at it when we make it.
Blessed be your Holy name!
Great big warm hug! You warrior, you!
And of course I'm still standing in agreement with everyone on here for your total healing.
In other words a MIRACLE!
CWillie, normal aging which just happened to coincide with some toxic bag of swill that was IVed into my body. Snicker. Alva, I can buy the coincidence between you and N with the floaters, but not in my case. Either way, what's done is done. No improvement in that area as yet, except the insects are smaller.
Funny thing but I was beginning to feel angry towards some of my family and friends for them ignoring me lately. I have no control over other people's behaviors, so during one of my many sleepless steroid nights, I prayed to God to soften up my hard heart a bit and just stop letting anger take over. That was Sunday night. On Monday, my financial advisor called me to say how he's been thinking of me so much since I called him about our accounts, letting him know of my dx and asking for guidance. Which he glossed right over w/o as much as one peep about Gee I'm sorry to hear that, etc. He said he was thrown for a loop and apologized!
Then my cousin called to say when her Uncle George passed in Jan, they were given an inheritance that they wanted to share some of with ME! I was gobsmacked. Chuck went to the mailbox and there found a check for $500.
2 other friends called me then to check on me, which lifted my spirits.
The dx came back ok from the Opthamologist, no danger to my eyesight going on.
A Homestead Senior Act tax break I applied for in Jan was approved, lowering my property valuation by 100k just for tax break purposes.
All in one day.
"Miracles" come in many shapes and sizes, and aren't limited to parting the sea and walking on water. If we look for huge miracles, we often miss all the small ones going on around us.
Sometimes we just need to humble ourselves and ask God for help in small, seemingly insignificant ways. That is when God comes thru BIG TIME in my opinion, granting wishes that are pure and not rooted in "heal me immediately please I have no patience and I'm scared." But instead, please God, heal my angry heart some and soften it up so resentment doesn't erode my soul.
Amen.
Isn’t He amazing?!!
Praying here for ya, before my nap!
May God continue to bless and keep you.
My DH interrupted me when I was doing my morning ritual. Because of that, forgot my make up and half way to the Diner when I realized it. (I have small eyes and need that liner and mascara) My DH said I looked OK. I said just hope we don't run into someone we know...yep ran into someone we knew. A Highschool friend I hadn't seen in ages. I always make sure I look decent when I leave the house. At least my better jeans and a nice top. My husband says "who cares, I am the only one u need to impress" I tell him because if we run into an old boyfriend I want him to think "JoAnn looks good for an old broad" 😂
Dr Henry Marsh, a marvelous memoirist and neurosurgeon, diagnosed now with stage IV cancer, has a marvelous book out called "And Finally".
Talk about miracles, just hearing how exactly an MRI works is unimaginable enough.
What a wonderful book this is. (For instance: "Our heart will beat, on average, about 4 billion times (and it is roughly the same for animals--a mouse's heart beats at 500 times a minute, the long-lived Galapagos turtles at four times a minute".....
But Dr. Marsh in his beautiful book has his moments of ANGER as well. Over a lot of things, and he tells it like it is.
Looked at a certain other way, your own Lord had his OWN notable moments of anger. If I recall my readings of the bible floods and all, anyway.
As Walt Whitman said "We contain multitudes".
I for one love all aspects of who Lea is.
He used no platitudes, he had plenty to say that I was happy to hear, after so many friends have shrunk away from me. There is nobody who's 'been there and done that' to better empathize with. Like AA sponsors, really......you can't sneak a fast one past them 😎 They get it like nobody else ever will.
He apologized to me for not "being a good husband" for 22 years. He was working within his limited abilities and deficits going on at the time. I thanked him for all he HAD done for me and the kids over the years and how, w or w/o deficits going on, he managed to rise to the occasion many times and save my DD from making a big mistake. How he spent a lot of money on my parents and improving their quality of life. How maybe he WAS a bit of an a -hole but a generous and good hearted one at the same time.
There were things I wanted to say to him that were never said since we split. That I still love him in spite of our marriage not lasting 40 years. That we have 2 great kids together and a dazzling grandson thanks to OUR combined efforts. That we did good. That I'm happy he's still alive.
It was a healing and cathartic talk, to say the least. Another small miracle that was a welcomed surprise. We made a deal to meet up at our favorite pizza joint (unbeknownst to us!) once this dizziness eases up some more. Chuck is invited too.
I think it's vital to speak to people who are in the same boat you're in when times get hard bc they get it like nobody else possibly can. The long nights of nausea and trying to make it from minute to the next. Clearing out the negative mind chatter that insists you're dying, the treatments aren't working, that you're a lost and hopeless cause. Dealing w serious side effects to treatments that will NOT let up, period. The advocating for ourselves when jaded doctors say you're finished or laugh at your predicament. All of it.
I think this call was another response from God to heal my hardened heart a bit more, to open me up to be more receptive in general and not quite so defensive. Its not really Me Against The World as I've looked at things for most of my life. I'm not alone and every person who reaches out helps me remember that.
😁😀🤗 I don't know what this comment has to do with anything really, except to say it infused me w a good feeling afterward, so another step in the right direction. To heal older wounds in such a way isn't something that often happens in life,,,,,ego gets in the way. Who was "right" or "wrong" for the majority of that marriage when who really cares?? We cared about one another then AND now, which bolsters my spirit and makes me ffel better prepared to fight the battles that lie before me. If HE can achieve remission for 7 years, damn well SO CAN I! 😁
I am glad that you got to the bottom of your eye issues. It is a relief to just know what is going on.
I have also prayed similarly to you in the past. Afterwards, I always felt closer to God and at peace. It is liberating to let go of the desire to be in control of having things exactly as we would like them to be.
I don’t see any value in holding onto grudges or being resentful and bitter.
Having said that. I do understand that all situations are different and it is normal for most people to experience a wide range of emotions before they are able to thoroughly process their complex circumstances.
I will be the first to admit that I have prayed selfishly before. Haven’t we all at one time or another?
Instead of praying for inner change, I would pray for God to change someone else’s heart. I usually found that my selfish prayers were not answered. It was when I prayed unselfishly that my prayers were answered in surprising ways that I would never have dreamed of.
Of course, you have bad days (truly awful days actually) but in general you seem to be at peace, in spite of your circumstances.
Sending you my love today and always.