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.
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))💞
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.
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
"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!
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. 😊
You are treasured on this forum!
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.
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!
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!
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!
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!
Bwhahahahahahahashahahah🤣😂🤣😂🤣😂
So tickled!
You have cracked me up, once again!
Order Chuck to give you the biggest hug from me!
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.
"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.
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.
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.
"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)
Good luck, Lea. Hoping for a productive conversation and a solution.
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.
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.
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.
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.
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
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
🤗🤗🤗