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.
"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!
Hoping that you will be able to get some rest tonight. Sending lots of love and many hugs your 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 😁
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. 🤪
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.
"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.
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
"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!
I'm happy to continue posting scripture, I just wanted to make sure you want me to keep posting it xoxo
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.
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.
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.
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!
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
****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.
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. 😇❤️
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.
Faith can move mountains, certainly it can heal cancer!
The darkest hour is always just before the dawn.
Many prayers for you❤️🙏
Quick share - saw a shiny dime on the ground yesterday. Thought of you❤️
Sorry for the rough night. I hope today is better. Praying for you.
Hope you feel better soon, Lea.
Still saying loads of prayers for 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