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Holy crap! I hope you are not offended, but I am almost in stitches over here (well, in stitches and at the same time, ready to throw down with the staff there). It sounds like you have “The Office” version of a hospital situation going on there.

Good thing you brought your East Coast moxie to the party.

I have great sympathy for hospital staff, but I am always amazed at the bumbling. Almost every time I or one of my people have been in the hospital, I have had to ride herd and double check *everything*. It is almost always communication gaps or interdepartmental arrogance that is the culprit.

Tomorrow morning, when they deliver your brick of a breakfast burrito, throw it at them while you yell “Olé” really loud. Maybe have Chuck bring a nice sombrero. That should teach ‘em:D
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Lea: Good grief - is ANYONE competent in that hospital? Yes, omeprazole is available OTC, but to tell the patient's husband to go purchase it at an off site pharmacy is UNACCEPTABLE. Who serves inedible food?! I can relate to some of these. I also have small veins and after contracting double pneumonia from a rare side effect of an ex urologist rx'd Macrodantin (discovered by me as no med professional had heard of the rare side effect!!) and being hospitalized ×4 days, three nurses were unsuccessful in the IV insert. They then bring in "the specialist." Oh joy - he fails. Finally they get someone after I said to get my sister in law, an IV therapy RN flown in from California. DD was livid to hear one day that my lunch was delivered at 4:00 PM. Seriously, enough 'me story.' Hope you can get attention IN the hospital. Hugs.
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LL: God threw me a huge bone tonight by sending an angel RN Ariana to care for me. I was struggling to breathe bc of all those nebs and feeling pain level 4. She clipped the oxygen on me, READ MY FILE and said how about a Tramadol for pain? I said ok.and immediately the chest discomfort lifted. Then the mild Tramadol kicked in to relieve the pain . Then it was time for the meclizine which finally attacked the vertigo and I'm feeling so so so much better, She could not get an IV in but stopped after 1 try and called in the hospital pro who has an embroidery magnifier on wheels w a goose neck he uses for small veins! He installed the damn IV in one poke on my top left FOREARM which hurts like hell going in but then it's immobile. Fabulous idea. To me it's unbelievable to have so few capable.

Hope, miscommunication is the issue here along with a computer system that uses only black and white and nonsensical charting w symbols and was scrapped decades ago. There will be no more breakfast burrito for me. The innards were good but the tortilla was shoeleather. Chuck brought Cheesecake Factory slices for lunch but dinner here was good. A build your own pita. I'm not offended that you laughed....its a comedy show here. Remind me never to tell the old man i crave something bc then he goes berserk and i had SUCH heartburn from that half a slab of pure fat i ate. Then he was trying to push more on me and i had to bring out Lea Light again and tell him to eat it himself or throw the damn thing out 😁😂🤣

Thanks Pam,,, I fully respect nurses, but this was a chit show till tonight. For Ariana to come up w a plan to help me that was successful means I'm nominating her for a Daisy. I am fair and complain/advocate when necessary, but praise when it's warranted. I did the same for a decade on behalf of my parents w no regrets.

Here it is 110am and I am wide awake watching American Pickers and typing on my tablet 😎
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In the infamous words of Patrick Swazye in the movie Roadhouse "be nice until it's time to not be nice." That might be the theme of your hospital stay there Lea with the nurses and doctors.
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Since your last post was 4 hours ago I'm hoping that you are feeling comfortable enough to be resting right now. I know if I was going to feel miserable no matter what I'd rather be miserable at home, is there any hope of getting you out of the hospital soon?
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All I can say Lealonnie is WOW at the lack of incompetence at the hospital you're in. You just can't make this s*it up can you?
It's unbelievable that this nonsense goes on in all hospitals not just yours and that they're able to charge a fortune for their nonsense and incompetence.
I am so sorry that you and Chuck are having to deal with all this when you deserve SO much better.
I'm praying that today will be a much better day all the way around.
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LL, it's painful to know that so many people are just *not* problem-solvers when they can be. My grandson's Mother is an RN and she is dumb as a box of rocks. My own Mother is a retired RN and just cannot believe someone that stupid has a nursing degree. Please, no offense to nurses as a group -- I'm talking about individuals.

It reminds me of the cynical joke: "What do you call the person who graduated last in his medical school class? Doctor."

"God threw me a huge bone..." When I'm feeling beggy and desperate that is the exact phrase I use. Scripture says we don't have to ever beg God but in our human-ness many times it sure is hard to wait on His answers. So glad you were sent an angel.

Praying you have a good day today (((hug))) !
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EEEEkkkkkkk, hospital travails! So much with pain relief in my experience is how proactive RNs are allowed to be (that is to say sassy) to the MDs. If they cannot bother them, they tend not to, but in SF the RNs can pretty much go to war with the MDs for their patients with total immunity. If some pain med isn't working, and the patient is in pain, the MD's life isn't worth living until that RN has something that works. It makes a difference. So glad tramadol was magic because for some it is and for some it isn't, and on you go.
If we take up a go-fund-me to get a chainsaw out to you for the burritos you might consider using it on some of the staff. I used to tell patients that when they needed help and we were so short staffed we couldn't get there, then a thrown metal urinal (full) blasted out the door onto the tile walls and floors would work. Don't suppose you HAVE a urinal, tho, metal or otherwise.
I don't suppose in all of this it is worth asking if they have any idea the why of what you are experiencing? That is, have any tests or scans given any answers other than the small strokes?
I sure am hoping this is a better day.
That Chuck. He is amazing. But when you were there for HIM, so were you. N. and I have teased one another that we're at our best when we are in the hospital situation for one another. We laugh and chat and there is just nothing in the world but one another, whereas in normal every day we are sometimes ships passing in the night as we go about our daily lives.
With all that's going on you gave us a ton of updates. To my mind that means you are strong enough to do that, or that you are so MAD you are strong!
I am hoping for a good day. Thank you so much for keeping us so up to date, Lea. Wish I could loan you my massive veins. I used to walk hand in hand with my dad as a kid and study his beautiful arms and hands, all ropey with veins. I always wanted them. And I got them. Didn't know then that girls perhaps should not have a roadmap of veins bulging on their arms. The phlebotomists LOVE me. In school everyone wanted to be my practice partner in IV insertion and blood draws. Just as everyone wants to sit on the side I pass with cards. They are sure to win.
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My husband hates hospitals. Trama at 4 yrs old.

37 years ago was his first AFib problem and another 23 years later. They have him in a small unit for heart patients. He was put on a heart monitor where they place those sticky leads all over his chest. They told him if he needed to go to the bathroom care a nurse for a bedpan or urinal thing. Not my dear sweet hubby. When he had to go, he took the leads off, walked down the hall to the bathroom, went, walked back to his bed and put the leads back on. The nurses never knew he had done it.

He is deaf in one ear and getting that way in the other. I make sure the staff is aware of this. Do they tell the next shift, no. He has to wear his hearing aid while he is sleeping because they come in thru the night and ask him questions. Next time he is in the hospital, I am bringing in a sign that says "THIS MAN IS DEAF!' and tape it on his wall behind his head.

((HUG)) and...have a Blessed Day.💞
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My husband hates hospitals. Trama at 4 yrs old.

37 years ago was his first AFib problem and another 23 years later. They have him in a small unit for heart patients. He was put on a heart monitor where they place those sticky leads all over his chest. They told him if he needed to go to the bathroom care a nurse for a bedpan or urinal thing. Not my dear sweet hubby. When he had to go, he took the leads off, walked down the hall to the bathroom, went, walked back to his bed and put the leads back on. The nurses never knew he had done it.

He is deaf in one ear and getting that way in the other. I make sure the staff is aware of this. Do they tell the next shift, no. He has to wear his hearing aid while he is sleeping because they come in thru the night and ask him questions. Next time he is in the hospital, I am bringing in a sign that says "THIS MAN IS DEAF!' and tape it on his wall behind his head.

((HUG)) and...have a Blessed Day.💞
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Ugh and ugh….at my house we can soooo relate! Dear son has had three hospitalizations in the last four months for a total of about 4 weeks and each time we were both blessed with some excellent care and some unbelievably crappy care. He quickly runs out of usable IV sites and we dare anyone to poke him until the person known as the hospital sharpshooter comes with the magic light for veins. We had a sign posted on his door that labs were to be drawn before midnight or after 6am, none of that 3am bloodwork crap. And no middle of the night weigh ins either. You really do have to advocate for yourself, even at the time you feel least like bothering. Our follow up surveys always include the names of employees who were kind and helpful as well as those who really need to be working in another field. Still praying for you often, peace, rest, and healing, and I’ll add not wanting to kill anyone incompetent 😜
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Lea, hoping today was better in some small way.
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Barb, so glad you are here. Did you get your AC issues solved? I come here also everyday to hear about how Lea is doing and hoping for better news. I seem not to be able to leave PM's anymore. Not sure if it is me or the site.
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Praying here, tonight, LL1.

You have helped us all. Our turn to bring you to The Father with earnest petitions.

Big hugs to you! 🤗
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Woke up at 7 shivering with chattering teeth to such a degree the nurse had to tell me to breathe thru the wracking shakes. CNA put 6 warm blankets on me (no heating pads) and they brought in heat packs and it still took 40 min to ease. Fell back asleep (this is the pattern) and woke up at 8 with a burning fever of 102. I told the staff I couldn't do one single thing but sleep so they left me alone till 10. The pattern is repeating right now AGAIN. Immunotherapy is the reason. I sat upright in my chair for 4 hours when the fugue lifted. Meaning the vertigo is getting better. Meclizine doing it's job. If all else fails, small dose of steroids are often given.

Blood cultures aren't growing anything, but wbc count still elevated.

Alva, they don't know what's going on. Everything is either the cancer or the immunotherapy side effects. Calcium in blood high bc cancer riddled bones are leeching calcium into bloodstream. Had to have IV fluids pushed hard for that and it's resolved for now.

Bandy what do you not understand about infections that I'm saying?

The Golden Girls marathon is entertaining at 3 am.

I belong to a group of stage 4 melanoma people. I posted there, did anyone have VERTIGO WITH IMMUNOTHERAPY????? One man said,
"My wife had a period of extreme vertigo after 2nd ipi/nivo. No brain zaps. The vertigo twice sent her to oncology urgent care. She had a swollen optic nerve at the same time which may or may not have been related. They had to rule out brain mets and LMD. They ended up thinking it was likely a pretty uncommon autoimmune vestibular toxicity on the same side as the swollen optic nerve.  They had just gotten started treating it with relatively low dose steroids when other things went haywire. These new issues required hospitalization and high dose steroids and we assume are what fixed the vertigo problem. It has not been an issue since. I hope you get it sorted."

Maybe my docs should join this group.

Starting downhill, goodnight all
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Lea: Thank God for the RN, Ariana!
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The Golden Girls always make me smile. Hoping and praying for you, Lea.
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I am also a fan of Golden Girls. Sophia is my favorite!

Hope you feel better soon, Lea.

Still saying loads of prayers for you.
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"Maybe docs should join this group" (referring to the group you belong to made up of Stage 4 Melanoma people) -- YES! Wouldn't it be wonderful if docs at least followed along on groups like yours and listened to patients and their family chatting among themselves. It would give them so much insight and a better understanding of thngs from the patient viewpoint.

Sorry for the rough night. I hope today is better. Praying for you.
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LL, so glad to hear the vertigo is under control. Thinking of you this morning and praying that your medical team will have great wisdom and compassion. Maybe you alread know this, but Jesus is often referred to as The Great Physician by biblical scholars. May you receive comfort and rest today.
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Good morning Lealonnie!

Quick share - saw a shiny dime on the ground yesterday. Thought of you❤️
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Prayers for you both🙏🙏 God knows you are strong to go thru this, remember he knows the end from the beginning and you are surrounded by angels.
Faith can move mountains, certainly it can heal cancer!
The darkest hour is always just before the dawn.
Many prayers for you❤️🙏
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Lea,
Thanks for your update, and I think that your telling us that "everything" is either due to the cancer or to the stuff being used to kill it makes sense.

I know we ALL expect MDs to be gods. They aren't. On my favorite podcast, Nora McInerney's --Terrible, Thanks for Asking--, where she interviews people who have been through every hard thing since the beginning of mankind, last night I heard an episode called "Perfectly" About a young woman ER doc with a hubby who was radiology MD at same hospital. She got a virus. Sick as a dog 48 hours, then fine. Then he got it. Sicker than a dog, but you can't call in when you are radiologist reading all the night scans so he went to work.

Day two he was sicker and went to his own ER. Yup, they said, he had her virus and they ALL thought he would be better in that 48 hours. Got three bags of IV fluids. Went home. Next day they barely got him in, he coded in the ER, was dead on day three. With his wife, her ER doc-colleague, and he himself having missed the sepsis that killed him in a day.

Medicine is, as my oncologist admitted to me, anything but an exact science. But it is what we have. At best there are what seem miracles. At worst there is the worst. And often no one is "at fault" imho. All are trying. Some have sucky bedside manners and the surgeon I chose for my own mastectomy had about the suckiest out there, but I knew he was the best, so chose him.

I wish it was perfect. But it is run by humans. And I have seen what a believer would call miracles. I am thankful for all the care you are getting, for those nurses and docs who already love you, and are trying everything they know to do it right for you. I put my faith in them because they are what I know we have, and there's for me, none better right now, to my own mind.

Right now it is a day at a time and I'm really glad of your support group. When D. first got Lewy's there was a FB support group that was such a help. As you said, I could just write "Did anyone get...................." and I had answers. I felt so much less alone knowing.

Love to you woman. Thank you for your update. I am hoping this is mostly side effects and they will start to let up today.
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This happened a couple of weeks ago and thought I would share.
I woke one morning realizing I had seen a dime. Where did I see it I wondered…then I realized I had dreamed it. The only other thing I remembered from the dream was a puddle of royal blue satin cloth with the dime face up on the cloth. Of course I thought of you Lea and your sweet dad. 😇❤️
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UP since 3 am, no fever, just profuse night sweats. I'll take it. Took a "cortisol" test at 330amm, where I get labs drawn, then a shot of cortisol in the IV. Then lab comes back 30 min AND 1 hr later to draw blood again. The shot made me feel full vertigo, room upside down and intense nausea. Zofran IV and it took 30 min to pass. Nobody can tell me about cortisol other than it's a hormone. 😐

****UPDATE: Cortisol test determines adrenal gland function. The IV cortisol is a steroid. My adrenal gland function is fine.

Bandy, I MYSELF believe brain zaps were caused by me fighting off infection. They never even heard of them here, so there's a Fat to Slim chance I'll get an answer, and Fat just left the scene.

GG, it would be nice if docs could check their EGOS at the door and LEARN by and from their patients experiences. Refer to Slim, this time, leaving town.

Alva, everyone knows doctors aren't perfect bc medicine isn't perfect. W/o empirical evidence, it's all educated guessing. The only doc has been helpful and wonderful to me is a woman undergoing immunotherapy HERSELF right now. See what I said to GG. Thank God for support groups like my FB one and THIS ONE MOSTLY.

Geaton, what happened to the scripture du jour? I miss them. I love that Jesus was called The Great Physician. The vertigo is not quite controlled. I'm still very off balance a lot 😣

LOVE the dime stories!

Jacksgaga, yes, God, knows the ultimate outcome here.......it is ME who does not and that's the hard part. To decide how far to take a very difficult treatment course w a 50% success rate AND the ruination of every day life. How much is too much when the suffering is so immense, and stopping will kill me quicker. That's the hard core truth of the matter. Cliches aside, it's questionable to try to extend life by 2 -5 years hoping for a miracle, knowing the harm to my body will cause me even more pain. My faith makes me unafraid TO die, knowing life is eternal. I do not want to be clinging to life so desperately that I'm willing to endure anything for "just one more day."

One youngish woman in my group is done with treatment. It's done all it can do for her which is not enough. She's facing end of life now and beyond devastated. Most heartbreaking post I've ever read. Clinging to life yet her body is destroyed. This is what I DO NOT want to happen to me. I have to know, I think, when to opt for Death With Dignity rather than let fear control what's left of my life.

I'm not at that point, 2 infusions in, but I believe it's important to know where I stand on such matters beforehand.

Being up at 3am in the quiet, dark room gives me too much time to think. It's not a good place to be. It feels lonely and that's when the fear kicks in. I can't eat a gummie and momentarily forget/push it out of mind.
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Have mercy on me, Lord, for I am faint. Heal me, Lord, for my bones are in agony.

Psalms 6:2

The Lord sustains them on their sickbed and restores them from their bed of illness.

Psalm 41:3

Gracious words are a honeycomb, sweet to the soul and healing to the bones.

Proverbs 16:24

The Lord is close to the broken-hearted and saves those who are crushed in spirit.

Psalm 34:18

It wasn’t any herb or ointment that healed them, but your word alone, Lord, which heals everything.

Wisdom of Solomon 16:12

Even though I will walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

Psalm 23:4

He gives strength to the weary and increases the power of the weak.

Isaiah 40:29
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Remember that there a people working at 3 a.m. and their workload is probably lighter than those working other shifts so don't be afraid to hit the call button to ask for a little of their time, even if they can't do anything more for you than listen, bring a warm blanket or maybe a cup of tea (keep a stash of your favourite herbal tea bags on hand)
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Been back here to quickly check, while I was out this morning.

I’m praying throughout the day, as you come to mind. And, in the night, ‘cause I do that Middle Aged Lady trip to the 🚽 a couple of times, at least!

Thanks for your latest update. I pray that you get some wise and NICE people at your bedside, today!
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Lealonnie, cortisol is(according to Google)"an essential hormone that affects almost every organ and tissue in your body. It plays many important roles, including: regulating your body's stress response. Helping control your body's use of fats, proteins, and carbohydrates, or your metabolism."
Not sure if that was helpful or not, but there it is.
I can't help but admire your raw honesty in the face of what you're going through. You truly are an inspiration to all of us on here, and I can only hope that when I am faced with the possibility of dying head on, that I can be as gracious, honest and kind as you have been throughout your journey.
Please know that even though none of us have met face to face, that you are loved by those of us that have gotten to know you through your posts throughout the years. You are a gift to us all, and I'm grateful to have met you through this forum.
I continue to lift you and Chuck up every day in prayer.
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Thanks Lea for posting your honest assessment and your thinking of quantity versus quality. A decision only you can weigh and make and you do that day by day. People are afraid to discuss these things. It is SO IMPORTANT that we do so. It was always my pleasure to work with and learn from my patients. They were the dead center on the level honest truth sayers in the world. I was privileged in all they shared with me.
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