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 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.
But ex number two I truly loved, and am a TEENSY bit sad that as our lives wind through to their end, and we have not reached out to one another for a final peace.
All in all, however, I am good with assuming he is at peace, and I will be as well. N. and I are together I don't even KNOW how many years, I think 37 or 38. I won't marry him, however, because I don't WANT ex number 3, hee hee.
John Huston, the actor-director said, when a reporter asked of his many marriages, wondering would he marry yet again: "Oh, sure. I intend to do it until I get it right, or die trying".
He died trying, I think.
Regarding your conversation with your ex DH. There have been quite a few times when I was convinced that my words or example didn’t phase certain people in my life. I truly believed that I was wasting my breath. I gave up on trying to convince them or myself that I could influence them in any way.
To my surprise, they contacted me and said that they heard my words over and over in their head and called me to apologize. It meant so very much to me that they not only heard my message but understood what I was going through at the time.
Sometimes, there are very nice surprises in store for us during our lifetime. I am truly grateful for these wonderful unexpected moments when they occur.
I am very happy for you to have such a beautiful and meaningful conversation with your ex DH. No doubt that you enriched his life in many ways and share lovely children.
The time that you spent together certainly wasn’t in vain. I bet a lot of divorced couples feel this way.
I have a dear friend who has often said that her divorce was necessary but she isn’t sorry about marrying him. They adore the children that they decided to have together. Now they have beautiful grandchildren that they love as well.
There are always exceptions, of course, but when it does work out it is beautiful, especially if they share children together.
You certainly know all of the scoop! John Huston led an interesting life.
Hollywood has always had individuals who have been married multiple times! I am reminded of Elizabeth Taylor or Zsa Zsa Gabor! Talk about multiple marriages. Didn’t Elizabeth Taylor marry one of her husbands twice?
My older brother married four times and they all got along. Family dinners at my house were never boring! LOL 😆 My kids numbered their aunts, number 1, 2, 3 and 4! They had oodles of cousins. A true blended family.
When he was already entering his elder years some young smart reporter sent him a simple message requesting his age: "How old Cary Grant".
Mr. Grant replied "Old Cary Grant fine. How you?"
I adore the old Hollywood actors too. I was just telling Golden in another thread that I adore Ruth Gordon. She was a fabulous character actress.
My favorite role that she played was as Maude in Harold and Maude. I know that it isn’t everyone’s cup of tea but if I were to choose to be a ‘crazy’ old lady. She is the one that I would pick! LOL 😆
Unexpected deaths are tragic. There is no way to prepare and it is a horrible shock. I’m so sorry for your loss.
Deuteronomy 32:10: "He found him in a desert land, and in the waste howling wilderness; he led him about, he instructed him, he kept him as the apple of his eye".
Psalm 17:8: "Keep me as the apple of the eye, hide me under the shadow of thy wings".
Sending you a hug tonight and waiting to hear back from you soon.
Per LL's post about her conversation with her ex...the Bible says a lot about anger and even more about forgiveness. Forgiveness is the most liberating of all conditions.
"Hatred stirs up strife, but love covers all offenses."
- Proverbs 10:12
"Go ahead and be angry. You do well to be angry—but don’t use your anger as fuel for revenge. And don’t stay angry. Don’t go to bed angry. Don’t give the Devil that kind of foothold in your life."
- Ephesians 4:26 (The Message)
"Resentment is like drinking poison and waiting for the other person to die."
- Saint Augustine
"Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you."
- Ephesians 4:31-32
"And whenever you stand praying, forgive, if you have anything against anyone, so that your Father also who is in heaven may forgive you your trespasses.”
- Mark 11:25
"If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness."
- 1 John 1:9
"But if you do not forgive others their trespasses, neither will your Father forgive your trespasses."
- Matthew 6:15
"Then Peter came up and said to him, “Lord, how often will my brother sin against me, and I forgive him? As many as seven times?” Jesus said to him, “I do not say to you seven times, but seventy-seven times."
- Matthew 18:21-22
“But I say to you who hear, Love your enemies, do good to those who hate you..."
-Luke 6:27
“ 'Judge not, and you will not be judged; condemn not, and you will not be condemned; forgive, and you will be forgiven...' "
- Luke 6:37
"Bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive."
- Colossians 3:13
"In him we have redemption through his blood, the forgiveness of our trespasses, according to the riches of his grace,Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you."
- Ephesians 1:7
"And whenever you stand praying, forgive, if you have anything against anyone, so that your Father also who is in heaven may forgive you your trespasses.”
- Mark 11:25
"But if you do not forgive others their trespasses, neither will your Father forgive your trespasses."
- Matthew 6:15
Tynagh...lol 😂🤣😁
Been up and wide awake since my new internal alarm goes off at 330am every day 🙄 The dead drunk feeling has gone away, too, and my head is clearer in every way. Meaning I'm antsy now and sick of being cooped up in this house! Good sign. I'm able to walk steadier and take lots of steps w the walker held up now, better each day w spurts of extreme dizziness thrown in. The floaters seem better after a shower or eye drops. Not a huge deal in the grand scheme of things, really.
My appetite is back, I'm weaning off the vile steroids as of yesterday and sb down to 20 mg by my next treatment date, if I'm done with the walker and symptoms. We'll see. 20 mgs is the highest dose I can be on to qualify for the 1 bag tx of Opdivo.
Neuro appt tomorrow downtown to give me peace if mind more so than anything. I feel like this chaos HAS been from the 2nd treatment with no urgent or permanent damage to me. That's what I'm hoping to hear after the exam and neck MRI in April. The bobble headed feeling I was having is mostly resolved too, so it no longer feels like my head is falling off my neck. Phew and thank God.
What I wasn't prepared for here is the magnitude of side effects from treatment where there are few concrete absolutes in terms of answers. That threw me. Now I hope I'm better equipped to realize the side effects WILL come and WILL go, too, hopefully killing off a lot of cancer as they go thru my body. Nothings for nothing, or free of charge. It's naive to think I'll skate thru this tx program, and like my radiologist said, "be realistic in terms of expectations. " I wasn't sure what he meant by that, and I'm still not 100% sure now either. But what I DO know is I feel no real pain these days and I was NOT expecting that, surely not from where I started in Jan.
This is not to say I'll leave symptoms unchecked or not expect the doctors to take them seriously, not at all. I just have to readjust MY thinking on some of this, knowing the road ahead is gritted and not w/o lots more challenges. I feel up to the task, once again, so I pray to keep that mindset moving forward.
Today is my daughter's 30th birthday, at 11:29 am. I made her a big beauty basket brimming w luxury bath and pampering items. I put a silver repousse box in the center that holds silver and pearl earrings (super modern) and a sapphire and diamond ring w earrings set her dad gave me 40 years ago. I hope we both feel joy tonight when she comes over to celebrate.
My ((HUG)) and wishing you a very blessed day💞 (not really a Churchy person but love when someone says that to me)
I think you will be dealing with happy tears. Amazing.
It is so wonderful that you feel so much better.
My "question of the day" for Neuro:
"IF these symptoms are disappearing as fast as they are--the bobblehead and etc--, and the whole eye thing now has an answer, is there really any reason to do the more invasive tests such as LP?"
Can that be put off given you don't even have fever anymore?
Just wondering. As nurses do.
I can't thank you enough for you letting us know each step of the way how each system is doing. I, too, was flummoxed by the sheer numbers of effects and I think I thought they were the illness or something.
They seem now to be leaving in leaps?
I know what the doc means about expectations. Between expectations and reality is where stress lives, and he is trying to warn you away from that. Well and good, and I HEAR him, but I can't help but be excited about how the level of pain has changed.
As always, thinking of you, feel my arm about you as you walk this journey.
My dizziness is off the charts this morning but I'm still able to walk the 40' hallway from front to back of my house/front door to back door holding the walker up off the floor, w a break here and there. So the side effects arent leaving in leaps, per se, but in small bits instead, which is fine. It's stupefying just HOW hard this dizzy chit is hanging on though! I betcha i wont be 100% until the 9-12 weeks the tx lasts in my body. This started 2/23 so i think theres still 7 weeks or so to go.
I even cleaned my Swarovski mini animal collection today which makes me happy to see them sparkle. I have about 40 of them grouped on mirrors which get dusty so it's a job to do it 🤣. Things we take for granted that become real accomplishments at some point. Weird. I guess it's a good idea for me to keep moving, doing, instead of just sitting. I'm able to maneuver around my kitchen now w/o the walker too bc of all the counters to hang onto. Making coffee by myself is now doable, yay! Baby steps here.
JoAnn I'm not a churchy person either but being wished a blessed day opens the door FOR those blessings to be recognized, right? And God lives inside of us and in nature just as much as inside the walls of a church, imo.
Sp, thank you! And in case I haven't said this, ONE MILLION THANKS for finding and sending that great link about the audiovestibular toxicity from immunotherapy. It was very useful. 😘
Got it.
I still remember when I had to ask my grandson what lol meant, because in my day it meant Little Old Lady, and I already was one then. He almost choked on his burger.
I am catching up to the 21st century and my TWO tablet prove it; podcasts were something I wasn't going to miss.
I so agree with getting up and around. All my old patients knew this and when a doc would order "bedrest" they would scream "NO! I can't do that. If I don't keep getting up I never will again".
The bones and the muscles must move. As you noted of the eyes, they have to adapt and adjust to new things they are dealing with so they can coordinate with the brain. You are so right!
Speaking of leaps, as soon as I am done typing, I will pray that that dizziness takes one and finally goes away!
I keep picturing you walking up and down that hallway, complete fresh color and bedazzled with jewels. And, even smiling, thinking of a video of you up and back, played on fast forward. 🤣🤣 I’m kinda punchy today, from being behind on my sleep! 😂🥱
Cheering you on from here!
Alva, glad you're able to look up the acronyms w/o too much difficulty....snicker. 😂 I still have quite a few I wind up looking up myself, iykwim.
Totally!!!
Another day, another chance to sparkle.
Sparkle on, darling.
Some girls are just born with glitter in their veins.
Glitter is the new black.
Shine is my favorite color. – Marc Jacobs
When in doubt, just add glitter.
All for you, lea.
As for me, nope. Come of a mom who LOVED her jewelry, costume esp. but real as well. Wore perfume and loved to DRESS. Me, short hair and blue jeans sees me through every day. One skirt has to do for weddings, funerals and all else.
Alva, I have SO MUCH costume jewelry collected I'm thinking of making a vase of jeweled flowers for DDs wedding too. Although when I had to assemble her spa basket a little earlier, I had a crying jag. Sheer exhaustion overwhelmed me and I felt like it took all my strength to do that one simple thing. 3 hours sleep a night for 10+ days, getting off of hi dose steroids, and sudden mood swings combined with feeling at the verge of collapse.....ugh. Nothing is wrong........it just goes w the territory I know. The inability to sleep takes such a huge toll on everything. As soon as I lay down I'm wide awake 😑
Oh well. This too shall pass in time, as much as I detest that cliche.
They use it in torture wherever torture is done. Know to be very effective in breaking us.