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.
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
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 😎
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.
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))) !
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.
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.💞
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.💞
You have helped us all. Our turn to bring you to The Father with earnest petitions.
Big hugs to you! 🤗
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
Hope you feel better soon, Lea.
Still saying loads of prayers for you.
Sorry for the rough night. I hope today is better. Praying for you.
Quick share - saw a shiny dime on the ground yesterday. Thought of you❤️
Faith can move mountains, certainly it can heal cancer!
The darkest hour is always just before the dawn.
Many prayers for you❤️🙏
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.
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. 😇❤️
****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.
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
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!
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.