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Scripture du jour:

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."

- 2 Corinthians 1:3

LL, as we struggle to comfort and support you, you are the comforter and supporter of many. May your day be blessed!
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Lea,

Hoping that you will be able to get some rest tonight. Sending lots of love and many hugs your way.
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Lea: Vertigo is no fun for sure. Prayers and virtual hugs sent.
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Hope, only one dose of cortisol was given to me and my levels have normalized TG. If I had to tolerate cortisol on TOP of the rest of it all, I'd be the first one throwing burrito bricks 🤣😃 Thanks for saying something SO sweet again it made me cry. In a good way.

Fawnby, love the Marcus Aurelius quote!

Geaton idk wth that upside down feeling was but I pray to never feel it again. My vertigo is dizziness with a feeling like my head is swimming which intensifies when I turn my head or look down.

RD and HHF, thanks for your kind words.

Today I had another milder version of the shivering w subsequent fever episodes, this time at 2pm 🙄 In the grand scheme of things, a great day 😁
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And…

I just realized that Alva is probably confused now. Last night, when I checked in, I was going to post a whole silly note in which Alva and I would storm your room and pile an arsenal of the brick burritos by your bed so you could throw them at anyone who pissed you off, lol.

I never wrote the post. 🤪
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Holding you up in prayer.

I don’t know if this will help or not, but if they haven’t mentioned it… if they are giving you cortisol, it can really mess with your head/mood/cause anger, etc. Just in case the flying brick burritos that Alva and I are going to stack next to your bed don’t feel like enough ammunition, lol.

You are in such a hard spot. The trade off of treatment seems like such a crapshoot. It’s weird, the thought of the actual moment of death seems easier to deal with sometimes than all of the potential crap/pain/debilitation leading up to that moment.

Thinking all of this through and the constant pivoting with new problems has got to be beyond exhausting. Hugs.
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Continuing my prayers for you and your loved ones. I hope you feel better soon.
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Lealonnie, others are sending Biblical quotes, so I'll post something different. This is from Roman Emperor Marcus Aurelius (161-180 AD), a Stoic whose writings sometimes sustain me:

"Forget everything else. Keep hold of this alone and remember it: Each one of us lives only now, this brief instant. The rest has been lived already, or is impossible to see."

Sending hugs, too.
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Lea, I was up at 3am last nite - so you could have communicated with me! Ever since my having Covid, my sleep patterns are skewed - I'll just fall asleep watching TV really early around 8ish...and will then wake up around 2am wide awake - and of course, thinking of things to worry about - and at that hour, everything feels tougher. So, I found an "Everyone Loves Raymond" marathon on TV and tried to just focus on that for an hour before attempting to go back to sleep.

I remain having very positive thoughts for you and your outcome....and I'm wishing you easier days..lots of comfort..continued strength..and always love.

by the way, what a gorgeous couple you and Chuck make - your picture is fantastic. And now we all know that what comes along with your fabulous personality and great wit and brilliance also is combined with your beauty - inside and out!!
Wishing you a peaceful weekend.
XO
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Scripture du jour:

"But He knows the way that I take;
    when He has tested me, I will come forth as gold."

- Job 23:10

From a commentary:

"Job challenged God’s justice, and God responded that Job doesn’t have sufficient knowledge about our complex universe to make such a claim. Job demanded a full explanation from God, and what God asks Job for is trust in his wisdom and character. "

source: https://bibleproject.com/blog/gods-gives-job-tour-wise-world

LL, keep on trusting Him and come out golden!
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LL, to clarify your statement that the room was "upside down"... is this different than spinning? I ask because this is something called Reversal of Vision Metamorphopsia. My 103-yr Aunt woke up with this when she had a systemic infection from a cat bite. The floor was the ceiling and the ceiling was the floor. 180 degree reversal. It is transient (temporary) but could be a sign of something else going on in your body... as if you need another circus act going on in there! If this is what you are experiencing, make sure you describe it to your doctor, that it is not "spinney" vertigo but something different (or it's in addition to the vertigo that was already present).

I'm happy to continue posting scripture, I just wanted to make sure you want me to keep posting it xoxo
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Oh Lea I am so sorry about your recent problems on top of other problems and to witness the sad plight of the young girl in what I guess you said is your group. You are so strong. It is always evident in your messages to so many myself included.

I came across this scripture. It was Christ speaking. "I came that they might have life, and might have it abundantly" (that it.might be full and meaningful). It is from John 10:10.

Stay strong. We all need you so.
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My bookmark. Just checking in. ((HUGS))💞
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Lea, holding you in my thoughts and prayers. At 3 am or any am/pm you feel lonely and scared, write to us here if you can and in your FB support group too, as someone is bound to be awake at the time to keep you company, give you support, and virtual (((hugs))).

What you wrote about Fat and Slim chances leaving was really funny. It made me laugh. Some doctors can be so arrogant, their egos so big they can barely see anything else. That's when you have to give them a jolt and remind them that they are dealing with a person with dignity and name, and not an object with a room number attached.
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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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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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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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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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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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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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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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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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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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Good morning Lealonnie!

Quick share - saw a shiny dime on the ground yesterday. Thought of 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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"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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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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The Golden Girls always make me smile. Hoping and praying for you, Lea.
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Lea: Thank God for the RN, Ariana!
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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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