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Scripture du jour:

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.
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I am so glad someone listened to you. The one time, and I hope the last, I had vertigo the room swam even with my eyes closed. I suffer from Motion sickness anyway. Not my DH or youngest daughter. They can read while riding in the car while my oldest and I are saying "please put the book down". My sister was really bad, riding in a car from our house down the street she go sick, literally. It has to do with your inner ear.

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.
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Tynagh, you are not intruding! You are welcome here anytime. I doubt it's Menieres Disease but a rare side effect of immunotherapy or neuritis, but who knows? I'm somewhat hopeful they'll have a clue tomorrow and I don't leave there w an rx for hearing aids 😑

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.
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I always wonder what James had seen, heard and been through for him to pen “Consider it all joy…” That’s a hard one and Hard Won, for sure! 🤣

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
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Speaking of pure joy, I just remembered reading a wonderfully moving book a couple of years back, Consider It Pure Joy by Jennifer Jones Austin.

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.
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Lealonnie, thanks for keeping us posted. I’m so glad that you’re home in your own space. That must be a wonderful feeling! Love and blessings headed your way.
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Lea,
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 .
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Good luck today, Lea!
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Scripture du jour:

"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!
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Thinking of you until we hear from you, Lea. I think you may go in already having your diagnosis choices, and surprise them for real. They will want you as a consultant next.
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.
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Thinking of you today and always. Hoping to hear positive news from you soon.

Sending lots of love and prayers your way.
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Its snowing today, of course, after spring like weather the past 2 weeks, and I woke up w an immunotherapy fever 😂🤣😃. The appointment is at 230 MST downtown which is 25 mi away at least and a crappy drive. I'll be fine. What's concerning me is that they'll want to do the Epley maneuver and I have 3 neck issues going on. Severe stenosis under and over the fusion plates at C3,4 and 5, the fusion plates themselves from 2008, and the tumors in my neck. The neurologist told me to be VERY careful not to traumatize my neck in any way. So he'd have to be consulted before any strong action were to be taken w my neck. Just another potential fly in the ointment IF that's the treatment path they want to take, idk. I'm feeling a bit apprehensive in general. My startle reflex is hugely sensitive the past few days too. God help me. Send prayers ladies.

I'll update late this afternoon or evening when we return.

😍
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LL, in my experience the Epleytmaneuver is not a sharp or quick movement. My PT taught me how to do it myself at home after Covid ramped up my vertigo.
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Ok Geaton, when I saw it done on my mother it was a fast and violent twisting motion.
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Just my checking in and bookmarking. ((HUGS)) 💞
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Almost 6:30 EDT here. I’m thinking that you could be either still in your appt, or on your way home.

I’ve been praying as you come to mind today, and now for safety as you travel back.
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Well, the audiology test shows everything from normal hearing all the way to severe hearing loss with high pitched sounds. Eardrums functioning normally which likely means this is temporary and will last as long as the dizziness, which the ENT does not think is vertigo but a brain processing issue between it and my ears, and why I'm having brain zaps and hyped up startle reflex etc. Now a referral to neurology which should have happened in the HOSPITAL IMMEDIATELY imo. Frustrating as hell bc it's more guesswork w no answers. She told me to try Dramamine and wrote a script for 5 Xanax to see if they will calm my system down w/o brain zaps.

This ENT specializes in cancer and hasn't seen these symptoms before with immunotherapy.

More no answers and driving downtown to hear theories 😑
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I can't imagine how very frustrating all this is to you Lealonnie. I get frustrated just reading about all the runaround and incompetence you have had to go through.
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.
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You are running into the most frustrating thing out there, in that YOU know MORE about some things now than your docs do, or at least about the POSSIBLE reasons.

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.
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Where's House and his team when you need them? I bet they could solve your vertigo and ear issues.

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.
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Lea: Prayers sent, dear lady.
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Lea,

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.
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Scripture du jour:

" 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!
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Morning Lea,

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.
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Postscript from me:

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.
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I forgot, your DD is a Nurse? Make sure she wears her scrubs when she is with u seeing Drs. I would go around and around with hospital staff. Daughter would walk in with scrubs on and things got done. She said because they could get nothing by her. Everyone should have an RN in the family.😊

So hope this is a "blessed day" for you. ((HUGS))💞
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DD is on VACATION lucky for her, not wearing scrubs or dealing with her regular cardiac clinic patients for 2 weeks.

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 🙄
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OMG, THANK YOU Jesus, God, and all the Saints because I am thinking steroids. From all I could find or read.

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!
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Alva, nobody in "traditional " medicine "believes" in ancient Chinese spices and remedies, nor have they heard of brain zaps, heard of audiovestibular toxicity, or know one IOTA about the human brain. Would do them well to broaden their minds a bit, esp since these leaves and plants are the basis for lots of our current medicines TODAY. But then again, there's no belief in cures that Big Pharma can't make a huge profit on 😑. Just the RXs written for me the past few weeks ALONE made Big Pharma a ton of $$$$ and not ONE did a single thing to help me. What do they care as long as the big bucks keep rolling in. Me, I'm going with this liquid turmeric FIRST before side-effect-laden steroids!

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!
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While I HATE steroid therapy that has to be ongoing (COPD and such) because of the side effects for our bones/joints, and the "steroid rage", I LOVED them for all the near instant miracles they wrought for my patients. Many would have been dead of swelling. Or ended badly damaged from cell loss without the steroids, and they could quickly save someone in resp. distress. But that's me. They are/were a great favorite of mine, even for the most severe Poison Oak.

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.
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