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.
Faith Under Pressure
"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way."
- James 1:1-4 (The Message)
The truths of scripture are often not warm & fuzzy in human terms because His thoughts are not our thoughts, nor are our ways His ways (Isaiah 55:8-9). Intense and prolonged pressure in the darkness is the only way diamonds are created naturally. LL, with your public journey we are witnessing gem-making in real time.
So glad you may get an answer and something can be done.
((HUGS))💞
P.S. Just a thought. Did Honey act funny around you before your diagnosis? Like wanting to be with you more than usual. My grandson has a cat that freaked out right before he had a seizure.
JoAnn....I did not notice Honey acting odd before my cancer dx, no. My mother was very prone to car sickness too, and constantly fought vertigo.
Geaton...I'd better come out of this a 75 carat diamond, is all I have to say! 😂🤣😃 Preferably a cushion cut with side diamonds.
Alva, you always bring a smile to my face and a twinkle to my eye w each post you write. Diapers vs "disposal" underwear, not so much. Better proofread scoldings about words before hitting post comment, eh?
Gershun, how awful to have to wait so long for tests in Canada! Frustration at its worst.
My son came by to remind me we knew this immunotherapy would be "a battle".......which it HAS BEEN w/o this vertigo! I truly felt like punching him on the jaw. 🙄
Just vegging out on my chair today, walking the length of my house w the walker which takes forever, ugh, and playing on my tablet. Chucks getting spaghetti and sausage from our fave Italian place for dinner w our gift card later.
DD called from FL where she's met the b/fs entire family the past few days and it went well.
And, yes, my friend, I picture you just dripping with diamonds made in that refining fire! Okay, Lord, we all vote that the next two treatments could come with a few less jewels! Pretty please? 🙏
I saw that diaper discussion and thought of this thread and what you’re going through, and just shook my head that even one minute is being wasted in that debate. 🤦🏻♀️
Anyway, you are treasured. We appreciate all your posts. It helps us to know how to pray, for sure. Xo
Jennifer developed leukemia; she needed a bone marrow transplant desperately but no donor could be found. The books recounts her trials and travails and manages to be funny, poignant and heartbreaking all at the same time. Her faith is astounding to behold.
So sorry that you are not feeling well , I just came across this thread . I hope they get to the bottom of your symptoms . Sounds like going in the right direction tomorrow !
And I wanted to leave a note of encouragement . About a dozen years ago my father had stage 3 Melanoma when diagnosed in his early 80’s . He had chemo and immunotherapy when immunotherapy was still fairly new . He had excellent results for a number of years . Although I did keep track and take him to most of his appointments , including for his other problems as well , heart , diabetes etc , He was very happy with the results and quality of life that he had even at his age . I hope you don’t mind this post.
Prayers .
"Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love."
- 1 John 4:7-21
and...
"We love because He first loved us. Whoever claims to love God yet hates a brother or sister is a liar. For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen. And He has given us this command: Anyone who loves God must also love their brother and sister."
- 1 John 4:19-21
Jesus made it abundantly clear how important loving one another is when he was posed a trick question. He cleanly distilled all scriptural commands down to just 2:
"Hearing that Jesus had silenced the Sadducees, the Pharisees got together. One of them, an expert in the law, tested him with this question: “Teacher, which is the greatest commandment in the Law?” Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself.’ All the Law and the Prophets hang on these two commandments.”
- Matt 22:34-40
These scriptures beg the questions, "Who are my brothers and sisters? Who are my neighbors?"
Answer: everyone.
On this forum especially, let's treat each other with love (aka the Golden Rule).
Sending love your way today, LL!
While you sit in the "waiting room" (and aren't THEY the worst rooms in the house?) come up with the best substitute for the word "diapers". Because the diaper-thread is still in number one position, and we can't have that. I am owning that I feel bad for poor Touch Matters (who seems to be holding her own), because I don't think we can get our posts removed, but she must be scratching her head and wondering WHAT in the world she just set a match to.
How's my Honey (I mean your little fur-person, not Chuck).
I hope you don't have far to travel for appointment and it isn't dizzy-ing.
Will await word.
Sending lots of love and prayers your way.
I'll update late this afternoon or evening when we return.
😍
I’ve been praying as you come to mind today, and now for safety as you travel back.
This ENT specializes in cancer and hasn't seen these symptoms before with immunotherapy.
More no answers and driving downtown to hear theories 😑
It shouldn't have to be this way, and I'm sorry that it's you that's having to deal with it all on top of everything else.
I'm praying for much better days ahead and that you will get the much needed answers on what exactly is going on. But my most fervent prayer is still for your total and complete healing.
It happens when patients and families research things, and they are getting all this specialized information about one illness and one treatment, whereas the ENT doc is seeing many patients over the course of the day with many problems, and doesn't actually have any familiarity with the medical papers recently published on YOUR subject I would bet.
This is so common and so awful. I always said that each patient begins as a mystery and ends as a specialist, knowing themselves and their symptoms better than most of the doctors.
I hate that you are in the "we have no answers" and the "may be this and maybe that". And the pushing it off to the next doc. I don't know how I missed you had no neuro doc or neuro tests while you were in; why did I think you did?? But the only good news is I think this IS ENT and there isn't the hearing loss.
I don't know what to say. I can ONLY ask if it is "slightly better"? Slightly WORSE? The same?
I only want it to go away so you aren't further delayed on treatment, am afraid of treatment making it worse. I just wish there were some answers for you, ANY ANSWERS. It IS so frustrating.
This has to be a depressing day, Lea. You get up with this, and you go to bed with it, and you try so hard to keep hopes alive and take care of yourself.
My thoughts and heart are with you. I suspect like CX and some others here I have been in and out all day long telling myself "OK, she is likely out of the office by now." Just wanting some good news. But it is looking now like we wait another day for good news. So we will. Because what choice is there?
Ending on an up note, it was nice to hear your DD met her love's relatives and it went well. I think so nice when in these days anyone cares about family. When will she be home? You can sit and dish when she is.
I loved that TV show but ironically didn't start watching it until years later when the show had already been off the air and they were showing reruns on TV.
Strangely enough that show actually helped a few people figure out what was wrong with them when real life doctors had no clue.
I hope that you receive the answers to your concerns soon. It’s frustrating when no one seems to be able to put their finger on the issue.
Still praying daily for you.
" If I speak with human eloquence and angelic ecstasy but don’t love, I’m nothing but the creaking of a rusty gate.
If I speak God’s Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, “Jump,” and it jumps, but I don’t love, I’m nothing.
If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don’t love, I’ve gotten nowhere. So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.
Love never gives up.
Love cares more for others than for self.
Love doesn’t want what it doesn’t have.
Love doesn’t strut,
Doesn’t have a swelled head,
Doesn’t force itself on others,
Isn’t always “me first,”
Doesn’t fly off the handle,
Doesn’t keep score of the sins of others,
Doesn’t revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.
Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. We know only a portion of the truth, and what we say about God is always incomplete. But when the Complete arrives, our incompletes will be canceled.
When I was an infant at my mother’s breast, I gurgled and cooed like any infant. When I grew up, I left those infant ways for good.
We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!
But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love."
- 1 Corinthians 13 (The Message)
LL, I pray you are getting extravagant amounts of love today!
First of all I am going to quote Bandy's last message to you in part, because I think it is important that this RARE side effect possibility, that CAN BE CURED WITHOUT STOPPING therapy (with steroids) must not be missed. And I fear your ENT who "never heard of it" IS missing it. And should maybe be embarrassed to say "never heard of it". Like Bandy said, I found it in a flash.
Bandy says:
"If it's not vertigo & not an ear thing...and the specialists+tests you had today ruled that out. Then it seems IMPORTANT for SOMEONE WHO DOES KNOW ABOUT THE AUDIOVESTIBULAR TOXICITY SECONDARY TO IMMUNOTHERAPY to rule that in or out!"
I think you have your girl (DD) with you soon? I hope you can pass by her that site with the papers on this "rare" side effect, your symptoms, the treatment, and the ability to go on with treatments. Let her know the ENT said "never heard of it". And at least, if you have to go on to neuro, copy out a few of those papers for him/her???? Maybe?
Hoping you feel better today. So concerned for you, with yesterday, with the fear that they are missing something TINY in the BIG PICTURE that they need to know. It impacts ongoing treatment.
Sorry to go all medical on you this a.m., and to make a long post. Thinking of you, frustrated for you, and SO over the diapers!! I find I can't try to make you laugh. I will do better, girlfriend.
I will let this go if you tell me, Lea, you and Chuck will just pass that link on to DD and let her look at a few of those papers about the rare side effect of "audiovestibular toxicity" effect, and the fact they treat it with steroids and you can get on with treatments.
If she will follow up on that and can go to appointments with you neuro or audiologist or ENT I think she would bang some desks. Make them at least take the time to LOOK AT IT.
It takes an advocate who can do that sometimes.
Sorry and I will shut up now. But when you go to appointments see me there banging on the desk.
I just need to know that this you are experiencing wasn't that thing found on the internet.
So hope this is a "blessed day" for you. ((HUGS))💞
Bandy, I just can't read long extended messages at all in the brain fog I'm in. Sorry. Short and sweet is the name of the game for me.
I insisted my oncologist call me on Monday morning and got the nurse to agree. I'm fit to be tied right now after the Xanax gave me brain zaps which nobody's evvvvvver effing heard of and Dramamine put me in BED all day w worse dizziness than I've ever had before.
I managed to snatch up a neurologist appt Mon afternoon 60 miles away, though.
My son went to his chiro who he told about me. Immediately the chiro said he's seen this exact thing over a dozen x in immunotherapy patients.....and it's BRAIN INFLAMMATION due to the therapy. Cured by liquid turmeric (A tiny amt on the tongue) which he took home w him and Chuck is on his way to pick up now. ALL THESE RXs aren't working, let's try a food product instead.
Then the phone rang w the oncology nurse. The on call doc who sent me to the hospital last week wants to speak to me at 4pm today about putting me on steroids! Thank you God. So I'm anxious to see what he has to say.
Brain swelling is in line w audiovestibular toxicity to me Alva, and why I can tolerate NO MEDS. Don't you think? And also the remedy for that is STEROIDS. I wonder why it's taken this crackerjack team over 3 weeks to draw this conclusion???? 😑 Maybe it's due process, idk. ALL I know is these 2 things better not be ANOTHER dead end bc I'm about to lose my chit over here. Bc this has NOT BEEN VERTIGO ALL ALONG, as I've been trying to splain 🙄
Whether brain swelling or audiovestibular or a combo of the same. The literature suggests, according to Bandy, that treatment doesn't need to be stopped for this, but that's in the hands of your MDs and you, Lea.
I am going to try to be less wordy. Try to be well behaved. And am so thankful to whatever powers may be for your news. Turmeric? Not so much, hee hee, but as Donnie Rumsfeld used to so aptly put it "Whoooooooooooo Knowwwwwwwwws".
My love out to you a a huge Honey-Kiss on my behalf!
The article you linked to discusses how steroids are the cure for the audiovestibular toxicity from immunotherapy, btw. Once identified, there are likely more and less toxic cures out there!
YOU, however, must do for your OWN body what you believe to be best, because when we are ill we make our own best decisions from combo info/gut/advice. And we live by that decision. People criticized me up one side and down the other for my actions in my own cancer. I am here 36 years later. Some of them aren't, hee hee.
You are correct that I do believe that Western Medicine with all its flaws is imho the best we have; but I understand the frustration as well. As you say, it was my life. I was on intimate terms with both the miracles and the frustrations.
You go girl, whatever your decisions for yourself are.