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So glad the steroids are helping with the dizziness.

What I think you should do is print out all your responses that tell us what you were going through with the Hospital and staff. Then make copies and put in folders and see that each Doctor that saw you and each nurse gets one. Call it "My experience as a patient". In my opinion, we all know our bodies best. We know when something is not quite right and to dismiss information you were given without following up on it was wrong. We are told to advocate for ourselves and LOs and when we do, we are made to feel we don't know what we are talking about. I had this with my Mom. There was something wrong with her and they kept saying "she has been discharged" Finally, I got her Primary to give her one more day. But it was my daughter walking in with her scrubs on they listened to. She found they were giving her an antibiotic with penicillian in it she was allergic to. And that is noted in her records with this hospital.

Hope you have a Blessed Day. ((HUGS))💞
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JoAnn, the steroids have NOT helped one bit w dizziness as yet, but it's unrealistic to think otherwise the doc said. What I said was, "I took the 60mg of prednisone this morning and while the dizziness is no different, I was able to focus on my face in the mirror on the bedroom wall for the first time in ages. I didn't realize I have 2 sets of eyebrows now....one red and one gray 🙄"

The liquid turmeric had me feeling good at 3am today.

I agree with the rest of what you said 100%. A patient survey SHOULD be sent out ..idk how this hospital works. A sheet in each medical person's file about how I was treated is a great idea. I had better treatment from some nurses and CNAs than MDs. My own DD has had to go up the ladder to get an order written by a hospitalist nixed bc she knew it would endanger the patients life! That's when she worked downtown at St Joes hospital. She also threw a giant fit when the attending physician in the ER REFUSED an order to catheterize chucks heart! He saw no signs of it being necessary. Meanwhile his triglycerides were 689 ! He was eating nitroglycerin like tic tac too. He finally agreed, the Cath was done, and he had 3 arteries blocked at 70, 80 and 90% and was admitted on the spot and had triple bypass the next day.
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Lea, I just read the message you had written 5 hours ago about so many instances of incompetence in the hospital that you've experienced and I was so upset hearing that that I couldn't even find the words to write. I'm just really sorry to hear what you've been going thru and I hope you're on the road to feeling much better.

You're always so eloquent in expressing yourself - and if it helps, you can always wage a complaint with the head of the Patient Services department to elaborate on your experience. Hospitals are very conscience of minimizing their liabilities and with what you endured, it's really a risk to the hospital.

Wishing you Everything that you wish for to come true. And by the way, Honey sounds adorable - dogs are the best!
XO
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Scripture du jour:

"Real wisdom, God’s wisdom, begins with a holy life and is characterized by getting along with others. It is gentle and reasonable, overflowing with mercy and blessings, not hot one day and cold the next, not two-faced. You can develop a healthy, robust community that lives right with God and enjoy its results only if you do the hard work of getting along with each other, treating each other with dignity and honor."

- James 3:7-18 (The Message)

How interesting that scripture acknowledges that getting along with others is "hard work". It was, even for the disciples. However, it is well worth the effort. World peace can never be a thing if it doesn't start at the molecular level, which is each of us.

LL, praying for a peace-filled day for you!
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Sorry, guess I took your post as the steroids helping.😊 I got one of those patient things for Mom and filled it out. Never heard from anyone about my complaints. And I had them. My GF had been an aide there and agreed I had a right to complain. I think we all should keep a diary when in the hospital or rehab.

Hope this makes you smile. For 53 years I have worn hard contact lens. I have cataracts forming so my Eye Doctor recommended I switch to soft lenses. The reason being that hard flatten out the retina and it means wearing glasses for 6 months before surgery so the retina can go back in shape. Soft only 2 weeks. I will NOT wear my glasses fulltime because...my lenses are so thick even with the lighter plastics. They look like magnifying glasses. So 2 weeks ago I started wearing Soft lenses. The first day I tried to use them on my own, I ripped one. So into the trash that one went. About 4 days later I lost one. I swear it was in the holder but not there when I went to put it in. (They are somewhat clear) I looked every where, retraced my steps and even looked in the trashcan hoping it was stuck on a tissue. No luck so I put another one in. Next day I take my shower and go up to the bedroom to put in my lenses. I put on the clothes I wore the day before. My husband is in the room and says "is this what your looking for?" There it was my lens all dried up on the end of his finger. I swear, I took a large flashlight and scanned the bedroom floor the day before. He said he found it right behind me. Must have been on my clothes all that time! I was able to rehydrate it and wear it the next day. This is not the first time my DH has found I lens I lost. Or a straight pin because he has stepped on it. 😊
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Praying for you here on Sunday. That today you would have at least SOME relief from those awful side effects.

You are treasured on this forum!
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Hope, yesterday I got an em survey from the hospital with text boxes to add info! 😂🤣😃😄 And boy howdy did I add info! Along w my name and phone number bc what good is an anonymous survey, imo? 😁

JoAnn, boy I used to have the dickens of a time with my contacts years ago. I wore 1 for distance and 1 for close up which took a lot of getting used to. So I chose to have laser surgery for distance correction which made a HUGE difference and even now, 13 yrs later, I only need 1x readers for close up at the computer and 2x at my tablet. I know cataract surgery makes big difference too.

Geaton ty for the scripture posting which is relevant, I believe. I belong to a stage 4 melanoma group on FB. A gal was posting yesterday w a question which led me to say that my oncologist said immunotherapy gives me a 50% chance of living 2 yrs and 52% chance of living 5 yrs. She lit into me that immunotherapy is THE CURE for stage 4 metastatic melanoma, period, and DON'T ANYONE LISTEN TO HER BS.....then sends me a pm about DO NOT EVER RESPOND TO ONE OF MY POSTS AGAIN. I said no worries, I'm blocking you, peace out. I snoozed the group for 30 days 😁Why do people who choose to live in denial join a forum to then dictate what others are allowed to say? Speaking of BS. I'd rather know the truth so decisions can be made at certain junctures w/o lashing out at others. There are all sorts of in Memory photos of loved ones who lost their battles with this wretched disease on that forum, which would not be the case if "immunotherapy was the cure". In some cases, immunotherapy is the cause of death, in fact, as w chemo, both very hard on the body as I can attest to. Be kind but stand your ground and speak your truth, apologize when necessary, that's my motto.

It turns out that I took 6 prednisone pills yesterday for a whopping 120 mgs instead of the 60 mgs I should've taken 🙄. I need supervision at all times I guess. Last night lying in bed my heart was racing and beating SO hard I thought This Is The Big One Elizabeth, but apparently it wasn't bc I woke up to pee at 3am. I always feel good in the middle of the night and the dizziness is least prevalent, for some reason. I woke up just as dizzy as ever this morning feeling down, then Chuck said why are there 6 pills sitting on your placemat and I had a brief out of body moment and hot flash as I realized my error. God give me strength. I wonder what going from 120 down to 60 in one day will do? Alva?

On the upside, my oxygen is at 95% instead of the sad 90% it's been at during the day, meaning the steroids have opened up my lungs from all that fluid overload in the hospital and I'm finally BREATHING DEEPLY for a change, thank God.

Tomorrow I see the neurologist at 1:40 pm and speak to MY oncologist at 11:30 am. Curious to hear what both have to say, and praying the neurologist has SOME sensible light to shed on this situation and has SEEN OR HEARD of it before. That is my prayer for tomorrow.
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Bandy everybody loved my Christmas basket gifts but they were way too costly and time consuming to make and gather up the supplies for. Plus I'm in no position to start up a business so arduous in nature, or even deal w my eBay business right now. I sold a J Crew bracelet an hour ago on Buy It Now and said UGH. Now Chuck has to schlep it to the PO and pack it up, but I'll box it up.
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Lea,

Been checking to see YOU check in, and to see how you feel. You aren't WORSE and in some wise are better, so I will accept that (as tho there is a choice.)

Wish I had the answer to what twice the dose will do. Report it would be my thing, but then like most things on a weekend, they will surely be every bit as helpful as I am!
The one thing we know is you survived it. And seems taking the correct dose today is kind of titrating down?
What good am I when you need me? Ha! NONE AT ALL.

You will be seeing your docs tomorrow, and will need more pred due to that overdosing, so let them know for certain.

Question on another subject? When is DD wedding?
Is it to take place where you live? Is it to be kept a bit smaller?
I am curious how much time you have before the nuptuals for the jeweled bouquet.
This a.m. I imagined ribbons incorporated to fill it in; would be less heavy as well.
I know. What can I say. I think crafts all the time.

I am glad to find you active and spunky, and full of that ironic humor I so love.

As to your Social Media friend on FB, isn't it fun that no matter how ill we become we still have the strength to want to fight on Social Media. You know, sometimes we just need to rant. Any excuse will do. I love it when people here post that I should never reply to them again. As though this 80 year old nutsy cuckcoo could even BEGIN to remember what I said yesterday. Or even earlier today!
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Alva, dd isnt even engaged yet but theyre thinking soon, and here in colo, but thats all i know. The bouquet will be all silver and gold jewelry, maybe garnished with a few large off white silk flowers w rhinestones in the center around the perimeter, and the stalk wrapped in a strand of clear rhinestones. That's my vision. She's 5'1" so it'll be on the smaller side but still substantial and heavy
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With all the work of this bouquet, Lea, she's gonna have to marry SOMEONE--that's for certain!
Just kidding. Not trying to rush any weddings. I can see that the vision is clear in your head! I will refrain from messing with it!
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Alva, all ideas welcome! I havent even started looking on Pinterest yet! 😏
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Lea,

The bouquet sounds lovely. Your daughter will be so proud to carry it. She will make a beautiful bride. You will be a beautiful mother of the bride.

Every once in awhile I will watch, ‘Say Yes To The Dress’ on television to see the pretty wedding dresses.

My friend’s daughter is a wedding planner. Oh, the money that people spend on weddings has gone up dramatically, huh? She only caters to million dollar and up weddings.

If people have the money and want to do that, it’s fine I suppose. I can’t see going into debt to pay for a wedding though. They could buy a house and other necessities instead!
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Oh, goodness! I just checked what I call the High Road for questions, and some poor dear is looking for her mom since Nov. 2021 and has posted four incoherent questions total. Putting all four together I still remain hopelessly lost! I am thinking the full moon is hitting? We can't afford one of those right now.

Lea, I am checking in on you tomorrow after the doc visits. Meanwhile I need a rest, hee hee. I hope you continue to feel better each day, and am anxious for any updates. See you tomorrow!
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“This Is The Big One, Elizabeth!”

Bwhahahahahahahashahahah🤣😂🤣😂🤣😂

So tickled!

You have cracked me up, once again!

Order Chuck to give you the biggest hug from me!
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“This Is The Big One, Elizabeth!”

Hahahahaha!!! We still quote or reenact this often in our family (a dramatic clutching at the chest with one hand and groping the air desperately with the other) -- and my kids don't even know the reference but they laugh and play along with it and say it themselves.
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Scripture du jour:

"Rash language cuts and maims, but there is healing in the words of the wise."

- Proverbs 12:18 (The Message)

The bible has dozens of comments and warnings on the power of the tongue and our words. On this forum, it is our keyboards.

"Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen."

- Ephesians 4:29

Amen to that.
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Oh, my goodness!!!!! I just realized where "This is the big one, Elizabeth" came from.
When you said that, Lea, I thought you were speaking to someone here whose name you knew while I was (as usual) clueless. I will sometimes see you reference someone by name, like "Colleen" and I will think "Who is Colleen".
So I thought you were talking to some "Elizabeth" now.

But FINALLY with the other references this a.m. I GOT IT! Lordy. Talk about being slow to surface.
How funny! It is so "you".
By now I would have thought that all this had turned you into someone else.
Good luck with the MDs, and I will be back tonight to check on the results. Take along some of those patient survey papers to wave in front of them so as to have them forewarned. Maybe a slab of corned beef to slap on the desk as well.
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A bit slow on the uptake these days, old lady ? 😁😂🤣😃 We old bats remember Fred Sandfords reference to meeting back up with his dead wife Elizabeth when he's pretending to have The Big Heart Attack, groping his chest dramatically and clutching at the air with the other, like Geaton said. In the Archie Bunker days of funny television which would have tons of people offended these days but had us roaring. I miss those days.

I've been up since 430am thanks to prednisone, so 3 hrs sleep last night. Good thing I have 60 hrs of tv shows recorded on my dvr, huh? 😁 I'm sure it doesn't help I titrated my own silly self from 120 to 60 mgs in one day. Sigh. My hearing seems a bit improved today, meaning Chuck is now officially deafer than me, so I'm not yelling WHAT? more than he is. Of course he insists on wearing a large Bluetooth device in his ear all day long despite needing it 30 min a day, which makes me question his logic when he can't hear in the first place. Men.

My freaking head is still swimming, no changes there. I talk to Dr C in about an hour and I hope NOT to have to summarize this story TWICE today instead of once. Hopefully the putz knows what's going on already. The neurologist not so much, I'd suspect. And I hope to not hear yet ANOTHER cockamamie theory today from him such as I have worms in my brain.

I'll check in after the neurologist appt this afternoon. Please have a good day for me today.
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We also like to invoke:

"Punch it, Margaret!"

from the 1989 Toyota Camry tv ad. Been quoting that one in the car all these years.

And also,

"Mama mia! That'sah spicy meatball-ah!" (1969 Alka Seltzer tv ad)
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"Time to make the donuts".

Good luck, Lea. Hoping for a productive conversation and a solution.
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After speaking w Dr C a little while ago, I cancelled my appointment w the neurologist. My brain issues are definitely coming from the immunotherapy, a first case for them, and considered very severe toxic reaction.

I am not a candidate for further immunotherapy as a result, as doctors can do no harm. Even if I were to be given just Obdivo, the brain issues could come back w a vengeance leaving me back here AGAIN, or maybe even a worse place. The doc has no idea if the cerebellum is affecting my balance or which part of my brain is inflamed, nor are there tests to determine such things. A neurologist would be of no use in this case.

I said, "so you're signing my death warrant, then?" Oh he hemmed and hawed and tripped over a bunch of words, and reminded me of his patient who's still alive after getting such a bad rash he had to stop all treatments, 18 months later.

I'll go see him early thurs morn for a "frank and honest talk". And about sending me for a PET scan to see where the cancer is at after 2 treatments. Some are in full remission by then.

I asked him for a prescription for Xanax since that's the only sedative that doesn't give me brain zaps. It's all ready for pick up. The fastest I've ever seen these people get anything done in 20 years.

This is all in God's hands, where it's been all along.

Thy will be done.
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Lea,

I am so sorry that you have experienced so much pain and suffering, both emotionally and physically during this quest for healing in your life.

God knows that all of us on this forum and many others who deeply love you, feel that you are so deserving of a miracle for complete healing. The world is a better place with people like you in it.

You are absolutely correct that all of this is indeed in God almighty’s hands. I believe this with all of my heart.

For the most part, I trust in doctors but there are mysteries in life that they simply don’t have any ability to answer.

So, I strongly agree with your comment, “Thy will be done.”

I hope that you won’t mind me asking everyone to join with me to say the Lord’s Prayer for you.

Our Father, who art in heaven, hallowed be thy name; Thy kingdom come; Thy will be done on earth as it is in heaven.

Give us this day our daily bread; and forgive us of our trespasses as we forgive those who trespass against us; and lead us not into temptation, but deliver us from evil.

Amen 🙏

I am Catholic so I say the Catholic version. I posted it for the Catholic community on this forum.

Below is the Protestant version.

We all worship the same God, so it doesn’t matter which version is said. There are several beautiful versions of the Lord’s Prayer. Maybe others will post their favorite version of this beautiful prayer.

Our Father who art in heaven,
hallowed be Thy name,
Thy kingdom come.
Thy will be done
on earth as it is in heaven.
Give us this day our daily bread,
and forgive us of our trespasses,
as we forgive others who trespass against us, and lead us not into temptation, but deliver us from evil.

For thine is the kingdom, the power and the glory, forever and ever.

Amen 🙏

Protestant version

We love you, Lea

I will continue to light candles and pray for you with all of my heart and soul. God bless you and Chuck for being a light in this world.

Many hugs sent to you this day and always.
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All I can do is give you a big (((HUG))) at this point. 💞
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Lea, May the powers that be bring you comfort as the coldness of winter is shut behind us and the flowers of a new season bloom. My heart aches for you today. Prayers are being said as I type.
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Lea,

I am not even going "there" until I know the result of the PET scan. I just am not. Some day you might tell me you are entering Hospice care. This isn't that day. When/if you tell me that it IS the day, I will believe you.

If PET Scan shows things are better, then that's where I hitch my wagon. And my hope.
If it shows same or worse, then time will tell day by day, and I will trust you to make decisions for yourself one day at a time.

Meanwhile, you are ALIVE today, and have a xanax script to help you sleep tonight. I just now want some easing of the side effects. I want your days now to be better quality, so you can soak up the loving care around you. You have the tremendous love that you deserve, that you have EARNED. From everyone.

For now, I can only join JoAnn in loving arms around you.
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LL, docs have opinions but the Lord has the final say in all outcomes. I continue to pray for peace in your heart.
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Gentle hugs, lea and prayers. We don't know what the future holds but we know who holds the future.

Proverbs 18:24 “A man of many companions may come to ruin, but there is a friend who sticks closer than a brother.” Jesus is that friend.
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Lea - I'm so very sorry to hear about the findings from immunotherapy - but I hope you find that the two treatments you've had has had great results for you.

I'm not in the medical field, but I just quickly looked up if there are other alternatives to immunotherapy and I'm just copying the below response....

"Alternative options of cancer immunotherapy such as CAR T cell therapy, oncolytic virus therapy, cancer vaccine provide new avenues in the direction of targeted killing tumor cells and provide better strategies to deal with toxic side effects of conventional therapy."

Lea, perhaps there are other better options for you - they're always coming up with new trials and methods - and nowadays, it's even feasible for doctors in other states to partner with cancer hospitals in other cities, like Sloan Kettering in NYC - certain hospitals are on the cutting edge of new treatments and trials. I just wanted to share that if it's of any help.

Sending you tons of prayers and blessings for more promising results and a most positive outcome.
XO
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Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
🤗🤗🤗
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