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.
Seems I now have my profile back but yours doesn't seem to allow messaging.
Alva is having problems with the site bigtime. She talks about it on the "On my mind" discussion. The Administrator finally contacted her and has no idea what is going on. For now Alva is going to take a hiatus from the group.
I tried to PM you but when I get in it does not give me the option to post. She wants to keep in touch with you and I have info but don't want to post it here. And my Profile is down. Do you have any suggestions? The only one I have is to give u an old email of mine.
I just hate that you're having all these horrible side effects, but hoping it will all be worth it in the end.
And if you filing a lawsuit could save even one person from having to go through what you are it would be worth it for sure.
I know I don't post often, though I follow your post daily, but please know that I lift you and Chuck up every day in prayer and am still believing for a miracle.
I’m so sorry that you had such a horrible night. This morning doesn’t sound much better. I hope that you are able to get some rest and feel better afterwards.
Will say an extra prayer for you.
JoAnn, leave it to a man to go play golf in ski jacket weather, come home likely miserable, but hey, WE'RE TOUGH GUYS. Enjoy your alone time.
I got an email from my dermatologist saying I needed to get in for him to do a visual body scan of my beauty marks and moles! 18 months AFTER the original one was removed, causing me all this chaos. I was LIVID when I read that and wrote back saying so. No protocols in place to follow up with patients who have had surgery to see if the melanoma went systemic bc "there's a 95% success rate with it", meaning if 500 patients come in yearly for a malignant melanoma to be removed, 25 patients WILL develop metastatic disease! So I get a phone call from this PAs nurse, of course.....throw her the dirty work and stay hiding out under your desk, coward. She informed me I SHOULD'VE had full body visual scans every 3 months for the first year, and every 6 months for year 2! I had ONE! IN TOTAL! She agreed how ludicrous it is to have no procedure in place like an ultrasound or similar, to check for metastasis at least for the first year or 2. All of us poor slob 5%ers just get to suck eggs, I guess. If these stupid insurance companies were to look at how much it's costing them to treat the 5%ers vs how much it would cost them to do PREVENTATIVE testing, they'd be gobsmacked at how much they're losing. As if human lives should be measured in dollars and cents anyway. But that's all they understand, profits. 😑 ALL of this could've been treated immediately with an ultrasound of my left armpit bc it's a fact that's where melanoma first travels to after surgery on the left arm. Instead of waiting till I became symptomatic bc by then, the cancer was in my bones, spine, lymph nodes and worst in my liver, the biggest organ in the human body. Sad. DD is so enraged she's calling a lawyer for their opinion about negligence in this case. If a lawsuit would stop ONE more person from going thru this, or force insurance companies to establish protocols for testing post surgery, it'd be a great thing. All I was told after the surgery was, " you're fine, we got ALL the cancer, you're done, bye bye & have a nice day." No talk about 5%, or what to watch for, nothing.
I'm going to try to sleep now after I drink another bottle of water.
Have a blessed day
JoAnn
"Friends come and friends go, but a true friend sticks by you like family."
- Proverbs 18:24 (The Message)
LL, thanks for sticking to this forum and sharing your difficult journey with incredible transparency and raw honesty!
EEEEk, thanks for the heads-up!
NHWM, I also have the tiny plugs. They help somewhat, but I'm a crazy case!
LL1, praying for you this morning. May God make his love for you clearly abundant today.
Praying for you daily, checking in every evening.
Lactobacillus acidophilus
Bacteria
Lactobacillus acidophilus is a rod-shaped, Gram-positive, homofermentative, anaerobic microbe first isolated from infant feces in the year 1900.
Isolated from infant feces? 😑
My chronic dry eye condition was cured using the 2 eyedops in each eye every hour on the hour program for about 2 months.
Colleen, good to know about the Magnatiles being good for your 2 year old g/s. I'll head over to Amazon where I can shop (for now) from my recliner.
Well, 40 and rainy here in SWJersey. I guess better than snow the North part of the State is suppose to get. My Daffodils are coming up and I tell them its too soon. They are hardy flowers, though. They just keep multiplying. DH planted them in rows, didn't work, they multiplied and now are clumps.
I have sent a prayer up to have your pain eased. I see things areca little better today. Again, have a Blessed Day.
I have dry eyes also. My optometrist put plugs in both of my eyes. I still use drops but I have noticed a difference since getting plugs placed in my eyes.
Colleen, I hope you get relief soon.
Lea,
Where is your pooch? Is she in your lap or by your side? She sounds so lovable! I have no doubt that she knows that you are not yourself these days. Dogs are so intuitive.
It’s so good to hear that you’re breathing easier!
DD wanted to get Magnatiles for my grandson but they're for 3 and up. He's 2.
JoAnn.... I thought it was acidophilus that helps with yeast? The Vagisil numbing cream is working fine bc it doesn't seem to be yeast. But I ordered Monistat if needed. It's like playing Whack-A-Mole with these stupid side effects.
Thank you NHWM and llamalover 😍
Today and yesterday afternoon and evening I've been very nauseous, but my pain levels have improved. I'm hoping for a good day today....my diaphragm feels a LOT better, like I can fill my lungs now w/o pain. Definitely a blessing.
My goal was to go to 1 estate sale as of March 1 which is tomorrow. Not sure I'm quite there yet (due to back pain only), but getting closer, thank God.
Lea, hoping this is a good day. Thinking about you this early and rainy day. We are so lucky in California to be getting rain and snow pack after such a long drought. But it's a bit dreary. I comfort myself with my rain gauge readings.
Looking forward to your daily update for us.
"But you, Lord, are a shield around me, my glory, the One who lifts my head high."
- Psalm 3:3 (NIV)
LL, may He lift your head (and eyes) high to see beyond your circumstances of today.
Save me, O God, for the floodwaters are up to my neck!
Psalm 69:1
This is not meant to make light
Hope that your pain level is at bay
May God hear your plight = nds, 2/27/23
Thinking of you today and always.
Magnatiles are my grandson’s FAVORITE. He builds in 3d in his room, and also 2d on the fridge/dishwasher/garage door, etc. There are starter, as well as add-on packs, all on Amazon.
Alva,
So, I have dry eyes. I use single-use vials of drops a few times a day. If I get up to use the bathroom in the middle of the night, I have to put some drops in, so my eyes even open. 🤪
Well, a couple of weeks ago, in the middle of the night, I apparently didn’t gauge how far my eye was from my hand, and caused the dumb abrasion! Rx-antibiotics. Patch for 2 days. 🏴☠️
A week later, the eye seemed worse. Doc took a look, and there was now herpes simplex virus in the abrasion! Gaaaah! 🤨
Oral and topical antivirals (5x/day) to the rescue. 👩🏽⚕️ 🏥
Today, all clear! Phew! 🎉
There are so many causes of itching, even your doc would be surprised if you were not itching at this point.
"ACV has antibacterial and antifungal properties and can help kill bacteria and yeast on the skin related to conditions like acne, eczema, and dandruff," Gathers explains. ACV's high acidity level may also help some skin conditions, but its high acidity makes it necessary to dilute with water."
I will do that, ty for the suggestion
I am thinking that you know a whole lot about liver function because you cared for Chuck through his transplant. You both made it through that!
And you will get through this too, I am praying!
SendHelp, I'm constantly thirsty so I'm drinking tons of water and other fluids, yes. Along with itching, fevers, nausea, sweating, constipation, mood swings, and severe pain in my right side, it's just another day in immunotherapy land waiting for the "really bad" side effects to add to the list. Urine is tainted with cancer cells that are being killed off and coming out that way, so output is decreased but very STRONG. Which probably leads to the massive itching. Skin is greatly affected by these treatments in general and why a grade 4 rash is what stops many from being able to get thru all 4 (only 50% do). So far this round, no rashes for me, thank God. Yes, it is nice to see the coming together of many believers in one place.
Just checking...
Are you drinking enough water, along with so many prayers for you and Chuck?
I am learning a lot visiting your thread daily.
Love the chair, the cooking lessons, and Chuck cooking some cinnamon rolls for you!
Also, love the coming together of many who believe!
If that's the worst of it for today, oh well--at least a common problem for us all once in a while in life. If maddening.
CX, worried about the eye. Hope you will update us here.
Lea, so glad it is a good day.
Does grandson like legos or are they too small for one so young? My grandson was mad for them and at 24 won't give up his collection of creatures, which are in my poor daughter's attic to this day. He keeps saying worth money!
So glad to hear you are OK today, and always love to check out this thread.
Daughter, thank you so much for your kind words.
And ITRR, yes, those words are comforting.
Sunday my grandson turns 2. He likes wheels and taking things apart to see how they work. He loves wires too 🙄. Anybody have any ideas for a gift?
Today I'm having some incredibly bad itching in a spot no woman wants to itch in. 😑 Which apparently is common too with immunotherapy. Just for sh!ts and giggles. Why does the Amazon truck always have the item you need most scheduled for delivery last? ARRRGGGGGH
Prayers of thankfulness for the cooks in your life, your warm dog, your leather chair, and that you’re still feeling well enough to come here and share your story.
May God supply your every need today!