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.
Like graygrammie did yesterday, I had to search you out, without even Geaton's scripture du jour to guide me. Hope this day is finding you a little bit less "dizzy-dame", a little bit steadier on the feet.
Will check in to see what you are up to later in the day.
When Spring has Sprung I have more energy. The days start getting longer, more daylight. Winter I hibernate.
((HUG))💞 for today. Off to get a shower and get something done.
Last night I had a meltdown from 2 bad days back to back, basically. Nothing but NOTHING helps me in terms of lessening the dizziness, and I was feeling nauseous but took a meltable Dramamine by mistake. I don't even know where it came from! But it tastes like poison and I wiped it out of my mouth immediately. Ate 5 bites of dinner and huffed off into the bedroom to lie down and cry it out. I told God, please either TAKE me or help me now bc I feel ill equipped emotionally to go on and ON with this chit. I fell asleep and slept till 530am. When I woke up, I walked alone (sans walker) into the kitchen and back which is about 50 feet one way! I had to fetch my Prilosec horse pill bc my stomach is decimated from all these steroids. Chuck said "WELL I'LL BE DAMNED!" in a shocked voice when he saw me. Ha! His first thought was.......we can go to estate sales again. Uh, not quite buddy, but yes, I seem to be getting there.
I needed a moment's break, a bit of hope that this situation is not permanent, and I feel like God came thru for me in a big way. A small miracle to revive my tired soul. I think the "testimonies" we all seek here come in bits and pieces, not necessarily a YOU'VE BEEN CURED announcement one day. But in smaller ways that restore faith in miracles. Amen.
I hunted down the Hurry-Cane which I had to use while on tour in Croatia and Slovenia in 2017 before my hip was replaced. It has a 4 prong-thing bottom that gives more stability than a regular cane. It's sitting here to use next...thats my goal. But I fell in the closet while trying to retrieve it and could NOT for the life of me get up! 🙄 I had to whoooo-hoooo for Chuck who practically had to lift me UP bodily. Ugh. What a crappy feeling that was. I did land on a bunch of soft stuff on the closet floor which was good. And also reminds me the need to declutter the damn thing 😑
I had blood work drawn this morning for the oncologist visit on Thursday. I don't know what to expect from that visit, but I'm not looking forward to it.
Golden, I put on a necklace and earrings today when I got dressed, in honor of my love for glam and your posts about glitter and sparkles. They always make me 😁. I can feel like 5 miles of bad road but I can LOOK good, right? Aside from the giant moon face, that is. I feel like I have no neck and 3 chins. Lovely visual, I know. Later on I'm covering up all the mirrors w black out shades. Just kidding. 😂😣
The mild neuropathy I'm having is def from the immunotherapy. It's a known side effect from both chemo and IT. My ex has it significantly in his feet after lots of chemo but the truth is, nobody escapes these treatments unscathed. We trade one issue for another in an attempt to stay alive longer, basically, hoping one of the side effects doesn't kill us. I'm sure FM makes everything worse though. What was your solution for right side swelling and pain? Mine seems pinpointed to a part of the ribcage actually. May not be liver but bone related, idk.
JoAnn, those Easter cookies sound like such a neat idea, I never heard of them. What's odd re neuropathy is both my parents had it and neither were diabetic. We think they may have been exposed to toxic matter for an extended period of time, which caused nerve damage.
Alva, fortunately, my brain capabilities have not been compromised this entire time. I'm very thankful for that, too. I can type all day w no issue.
I'll check back in later. Have a great Tuesday all.
The word of the the day is: Ascot. Get yourself a flamingly wild scarf and drape, drape, drape. Then accessorize with a glittery pin/broach/necklace/random shiny object. Viola...who needs a slenda' neck...we've all seen (mostly in my mirror) them wrinkly neck chicks!!
Oh, Lea, I so hate to hear when it is tough for you, and to hear of those times it is just too much to bear. I am glad you let it in so you can let it out.
I have had in the last year two falls, both carelessness and due to the aging balance thing. One walking backward in yard over a garden tool, unable to regain balance, going down in the grass with the back of the head hitting a flagstone. Second in the back porch over a cleaning implement, again stepping backward and reeling unable to collect the balance. BOTH time I quickly realized I was not "broken" but just this odd thought of "Well here you are. This was bound to come. And here it is." This sort of unreal feeling that yeah, this is ME. And how did I get here.
For a while when I would go to the doctor along with all the questions about "do you walk" and "do you drink" and whatever there was the "Have you had any falls in the last year". They don't ask anymore. Do they KNOW? At this point I am "Yeah, but who's counting.
I know just the cane you mean. My stepdaughter has a condition that makes for poor balance (talk about me helping her and it being the blind leading the blind) and that's what hers is.
I hope the rest of the day is good, Lea.
BUT….GOD CAN HEAL! He can make a way. Praying for strength and courage through this!
I'm glad that God came through for you today, and rejuvenated your soul. It's in those moments when we have the strength and courage to carry on.
I hate more than anything that you have had to deal with so much sh*t(I know you say chit, but I just say it like it is)while trying to be healed, but you have dealt with it with such grace and dignity, that we all are amazed at your fortitude.
I'm continuing to pray for both you and Chuck.
Speaking of falling. I'm still not able to walk normally since my fall in November. At the time I thought I'd just broken two metatarsals but it's really my ankle that's the problem now. Can you believe 5 mths. in and I'm still waiting for an MRI.
Today I ventured out for a short walk but I'm still limping. I feel so self conscious. It feels like everyone is staring at me. I'm only 61. I hope this isn't my life from hereon.
But thinking of your post Msblcb. I do believe God is trying to teach me something. I've grown closer to him this last 5 mths. So maybe hurting my foot was a good thing.
I remind myself daily that others have it so much worse. Lea, case in point. My heart hurts for you and I think of you so often especially when I start to feel sorry for myself. I think, just think of Lea and what she is going through. If she can deal with her situation then I certainly can weather my small storm.
God does answer prayer but not always as and when we would like. Some years ago I had a fungal gut infection and was told by the specialist I would probably be on meds for life. It was miserable. I prayed and prayed. About 5 years into this, one day I was watching a Christian program on TV and the pastor said to lay hands on the parts that need healing. I did and suddenly my gut gurgled like crazy and I knew the infection was healed. I stopped using meds and it was.
Now, I did have to be careful with my gut, eat right, probiotics etc. and still do but much less than I did, and probably no more than others my age. Witness to God's mercy!
"I can feel like 5 miles of bad road but I can LOOK good, right?"
Right - with bells on, necklaces and earrings!!!! If I feel sick in the middle of the night I often get up and "do my face" and hair. If you feel miserable you don't have to look miserable. Looking better makes me feel better. I spent a lot of time in bed with that gut thing so I bought some nice silk nightie sets so at least I could look good. I'm all for Tynagh's scarf and sparkle suggestion. Go girl!!!
I feel naked without earrings lol. Dgd once said "Nail polish without sparkles is like Nana without earrings." I may be in my dressing gown but I have earrings on - the bigger the better.
The FM will make you feel worse for sure. Could be liver, could be rib or... with FM the gut is affected too - slower stomach emptying. I figured that gas and whatever was being trapped in part of my digestive system so I read about alternative medicine and tried several things. The pain/discomfort and swelling went down. What worked was ginger tea, or ginger sprinkled in my coffee - no more than a tsp a day or I got the big D, AND massaging the area, pressing so I could feel my gut and massaging it to relax it and let stuff flow as it should. It took a while (some weeks) but it worked. It's gone now. Deep breathing which relaxes you also works. My gut was acting up one evening and I did deep breathing exercises for an hour and at the end of that time it had settled right down.
Also those with FM can get spasms of the ileocecal valve (near the appendix) which can be quite painful. Used to wake me up at night. I asked the doc for an ultrasound as I thought it was an ovarian cyst but the u/s was clear. Someone on a CFS/FM forum mentioned just what I had. Again alternative medicine recommended massage and it works, thank goodness. God has many ways to heal us. Some are sudden and some require us to do part of the work.
Meanwhile, as others have mentioned, He does spiritual work in us, builds our faith and draws us closer to Him. I had a near death experience after my youngest was born and I grieved coming back. Who wants this world when you have had a taste of heaven? But that was His plan. A story for another day.
Idk what this pain is on my right side, but it's nothing horrendous TG. W/o having had any blood draws for so long, I'd convinced myself it was a liver issue flaring back up, but I guess not. The mind wanders to ugly places with too much time on our hands. 😑
Ginger is a fantastic spice I use lots of. Even w shrimp tonight! 😁
Msblcb, I wrote out this comment to you and poof it vanished. Ugh. I admire you for the love and care you gave your mom during her end of life transition which was fast and unexpected, if my addled mind is working right. Hearing loss is a tough thing and I'm relieved you're doing well now. God's timetable isn't our timetable, and faith thru the trials is difficult for some of us. But when He comes thru, it's a miraculous event!
Gershun, it so irritates me that you're unable to get proper medical care for your ankle w no MRI for 5 months and counting. I can complain about Dr C and all his BS till the cows come home, but I get my tests and treatments w/o issue every time. Its absurd to think something serious is going on unchecked. Prayers sent that this MRI will be scheduled SOON. Others may indeed "Have it worse" but that doesn't diminish YOUR pain and suffering. Chuck pissed me off awhile ago when he reminded me how bad off his friend D is who has lymphoma cancer. Yes, I know, but how does his pain and suffering cut MINE down? It's dismissive and underplays valid feelings when such comparisons are drawn, imo. I pray to God that ALL of us get better and have less pain and suffering to deal with.
Tynagh, lol. I'd like to cover my head with a beekeepers screen thingamajig. Its stupidity to feel self conscious about meds creating a situation, yet I've always been self conscious my whole life anyway. I was taught that Appearances are EVERYTHING, and its what's on the outside that counts. At 65 I'm hellbent on changing that bad thinking FOR GOOD. If a cancer dx has taught me anything it's that beauty is on the inside. Scale numbers and size tags are a terrible thing to waste life on, and we're all perfectly beautiful children of God just as we are today. We don't all have to look a certain way to be beautiful either.
Funky, yeah I know it's shit but I don't want the admins bleeping me out ova here 😂🤣😃
Alva, speaking of brains, my ex told me he married me bc of my "mind" which was what attracted him to me in the first place. Not youth or big boobage, but brains. I was unusually touched by that comment, especially since it was HIS mind that attracted me to HIM.
NHWM, ty for always checking in and sending love my way 😗
Re that pain in your side I can't and no one can know what it is till they do some testing. I understand that your mind goes into dark places. It may or may not be something related to your major health issue. Hopefully you will know more by the time you see Dr. C.
Meanwhile this scripture always helps me to see things in better perspective.
“For we are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places.”
—Ephesians 6:12
Sending love and prayers.
Golden, I'd love to hear your near death story as well. But when you are ready to tell it.
Lea you are right. When my health is not good I stop caring as much about my appearance. I slap on some lipstick and mascara but to be honest all I want is to be able to walk normally again. I've needed my hair cut and highlited for weeks now but I just don't care so much right now. Not saying I'm letting myself go but I'm just not dwelling on appearances too much. In my family appearances were everything. I hated that. Probably why I had an eating disorder at a very young age.
Part of me is trying to accept that I may have a permanent limp now. I've been thinking that if I learn to accept it then it will suddenly get better. Weird, skewed thinking maybe but for some reason I feel that way. Sort of like the serenity prayer. Accepting the things I cannot change and knowing the difference and all that. But, I'm not giving up. Doggedly doing my physio exercises every day. I'll keep doing them till something changes or the cows come home. Whichever happens first.
Serenity to Accept the things we cannot change
Courage to Change the things we can
Wisdom to know the difference.
Amen.
God grant us the serenity to accept the things we cannot change,
the courage to change the things we can,
and the wisdom to know the difference.
Prayers for today, for less dizziness, for calm in mind and body, for peace in your soul, and healing in your spirit
Alas, if truth be told, I WAS a bit bored up on the high road, as everyone there today needs an attorney, not me. And I doubt the attorney can do much with them, either.
Tomorrow is Dr HG (HairGel). But today you're still FREE! I hope it will be a good day, Lea.
Polarbear......yasssssss Please and thank you! 😁😍
Daughter, the Serenity Prayer is grounding for me. Helps me decide what I can and can't control in my life. And I tend to be a bit of a control freak to begin with. 🙄
I am feeling better and able to walk on my own more today too! Thank you God and Jesus and all who have been praying for me. I actually feel like going OUT of this house for dinner tonight. Chucks been cooking too much lately and a break is in order methinks.
More good news yesterday in that my UC Health visits were APPROVED. I go on 4/18
Today our tax gal is trying to "squeeze us into her booked schedule " which is giving me aggravation. Is today not April 12th? She's 80+ years old (a tax lawyer too) with tons of health issues and moved to a city 70 or 80 miles away! Then has trouble getting here to Denver. We've used her services for 10+ years now but it's time to make a change. She still hasn't told me if we owe or if a refund is forthcoming. Today the roofer is coming back (probably) to replace the shingles we lost in the wind. $500 there. Then my mortgage co called to say I was not approved for the Homestead Exemption tax discount which I WAS. He's sorry but cannot email me w the address to send the doc to! Meanwhile, it's over 2 MONTHS we still don't have chucks car back from the repair shop for minimal work and "back ordered parts" ! TG my old Pathfinder is in good working order w 159k miles on her! Much like me.....beat up but still truckin! 😂
Anyway, Thank God I do have my wits about me or I'd never be able to manage all these bills/finances and other issues cropping up. Chuck has zero tolerance or knowledge about any of this stuff. So off he goes to do bedding laundry while I handle the other stuff. 😁 Team work makes the dream work, right?
So sorry you are still having the dizziness.
Got in the mood to wash curtains. Looks like I will need to get new ones for the one guest room. One sort of fell apart the other is OK for now. Having company so no time to shop so took the worst of the two and put it in the corner window that is not seen from the hall and a hutch sort of hides. Turned out when I hung it, the folds hid the damage. The better one is in the window that's seen. Works for now. My kitchen one came up really nice. Have had it for years but can't find one I like better.
Falling and breaking something is my worst fear. I know, it only takes a second. Bought one of those extendable Swiffer long handled dusters so I don't have to get on the bed to reach the picture handing on the wall behind it orva stool to reach high pkaces. My SIL was dusting a picture behind her bed when she slipped off the bed and twisted her knee so bad she needed a replacement. I try to keep things picked up off the floor, like dryer sheets in the laundry room. My Mom was told with neuropathy in her ankles she should not pivot, it causes falls. No more flip flops. I have a pair of sandals I love with no backs. I walk OK in them but have caught the toe on carpet and almost fell. I know someday I will fall.
((HUG))💞
Here is part of the reading from Lyn Eib today that expands on this topic. It's helped me process things a bit differently, I hope it does the same for you:
I don't know if I've ever said it out loud after my diagnosis, but I definitely thought it many times: This is not fair. And another question I never voiced but really wanted answered: if God really loved me so much, why did he allow an unfair thing like cancer to strike my life? Then I learned a life-changing lesson from author Phillip Yancey:
* DON'T CONFUSE LIFE WITH GOD *
In Yancey's book Disappointment With God, he writes about a man named Douglas who he interviewed because he thought Douglas might feel great disappointment with God. Life, as Yancey describes it, had been very unfair to Douglas. While his wife was battling metastatic breast cancer, Douglas was involved in a car accident with a drunk driver and suffered a terrible head injury that left him permanently disabled, often in pain, unable to work full time.
But when Yancey asked this victim of unfairness to describe his disappointment with God, Douglas said he didn't feel any and instead he answered the following:
"I have learned to see beyond the physical reality in this world to the spiritual reality. We tend to think, "life should be fair because God is fair." But God is not life. And if I confuse God with the physical reality of Life by expecting constant good health, for example, then I set myself up for crashing disappointment...... if we develop a relationship with God apart from our life circumstances, then we may be able to hang on when the physical reality breaks down. We can learn to trust God despite all the unfairness of life. "
Go ahead and say it:
* it's not fair that I have cancer
* it's not fair that my loved one has cancer
* it's not fair that this has happened to us right now
* say it but don't be confused that life should be fair because God is
* life is not fair but God is not life
Dear lord, I am so disappointed that this cancer has touched our family. It feels so unfair. Please help me to accept that life has been unfair to us but still to believe that you will be faithful to us. Please help me to develop a relationship with you apart from my circumstances and to learn to trust you despite the unfairness of life. I pray this in Jesus's name. Amen.
Still praying for you, and Chuck.
Always have been.
May God richly bless you today!
We live in a fallen world. God has promised to be with us through our trials and tribulations. He did not promise there would not be any trials.
I would hope He will be merciful to you, and give you the healing and grace you need to live the best life He has planned for you.
Thank you for your continued prayers, they are appreciated 😍
When I got cancerI had already placed a little redheaded dead newborn into the arms of a crying Mom who wanted to tell her goodbye.
I had seen a two year old die of brain cancer; there's nothing more innocent than a two year old, and nothing more bereft than his parents.
Like Lea says, we have been GIVEN LIFE (we agree on that) to make of it what we WILL. What we CAN. What we are ABLE TO.
IMHO, because you know, I could be wrong, and all the rest of you, right!
I had bid goodbye to 100s of young, beautiful, gentle men in my city's epidemic of AIDS.
I had already lived 40-plus years, raised my child, had a great job in the most free country in the world, one that didn't know what it is to have planes pouring napalm out of the skies upon its naked starving children. I had great parents, and the best brother in the world. Good schooling. Work I loved.
Where does that much luck come from? Certainly NOT the lord's love of an atheist.
So....then.....cancer.......why me? Why in the world NOT me? And why, another nearly 40 years am I STILL here? Because most of my support group is gone. Whatever reason I am still here, I think it is unlikely because the lord loves an atheist.
It is an age old philosophical, theological, HUMAN question I think.
It was Epicurus's ancient musings which likely express things from the atheist's point of view:
"Is God willing but unable to cure evil?
Then he is impotent.
Is God able but unwilling to cure evil?
Then he is malevolent.
Is God both willing AND able to cure evil?
Whence, then, evil?"
Epicurus was always a little on the angry side I think. I'm not angry; I'm just not capable of belief.
So, Epicurus aside, for me, our world is full of both beauty and suffering. For ALL things. I will give Epi that man does seem to me meaner than your average animal--(so few sociopathic or psychotic sheep out there) man makes me hope it's a fib that we were made in any god's image.
It is one of the age-old questions that believers struggle with and non-believers are free (because really we have no one to ASK "why me", not that we don't have our own questions.
All things suffer. There's no comfort in that. Life is short. And as Annie Dillard says, we live it as though 1,000s upon 1,000s hadn't come before us, and 1,000s are not yet to come. And wow. It IS unfair. To us, to the butterfly sucked into the car grill, to the ant under my foot, to the microbe we found a vaccine for. And life is full of the most extraordinary beauty. And I think when we get ill, we sometimes SEE that beauty in all its most minute nuances. Many of us do, anyway.
Ah, apologies. For us atheists the philosophical questions are our "bible class". I must hope I haven't offended many, and if I have I shall blame it on old Epicurus.
😁
I concur !! I don’t know if it’s because I was a nurse or just seeing so much suffering in general……
I’ve been called cynical , I prefer realist as far as health issues popping up .
The human body is very complicated , bound for things to go wrong .
Me? I just get baffled by all of it! Sometimes, I want to have enormous amounts of faith after all of my years of Catholic school, but if I am to be completely honest, I can’t say that I do. I lean more towards being a realist too.
I am truly inspired by others. I envy those who have a sincere deep faith. My faith has come and gone throughout my lifetime. I do pray but I also love that we have free will to discern for ourselves what is best.