
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.
I had to take a .25 Xanax today for withdrawal symptoms w prednisone, even at a 10 mg drop. . Shaking hands, racing heart, profuse sweating and bad startle reflex response to noise. It did the trick, thankfully, and I'm ok. Still dizzy of course. But I'm getting OFF of these meds period, no matter what. Long term hi dose prednisone is a bad thing plus I have no faith it's helping me. Nothing helps w the dizziness and prednisone makes it feel even worse wi 90 min of swallowing it.
I think you're right about Dr C 😑. Of course I was just joking about him being on A.C. For all his faults, I do believe he's tried to help me, even w the Skyrizi which was intended to try to calm down my over hyped up immune system. Trouble is, my central nervous system IS SO JACKED UP these days, anything tried is like pouring gasoline on a raging fire. I am glad he toned down his wise-assed mouth though. I can give as good as I get so both Chuck and I were ready to ask him, point blank, if he'd written me OFF yesterday. Which wasn't necessary.
I have been approved to use UC Health as I wish. Medicare allows this so Kaiser apparently has no choice if I want to switch. What I dont know is what co pay and co insurance costs will be. But, chucks friend w lymphoma has been using UCHealth (with Kaiser HMO also) w no complaining about costs so.....fingers crossed. I think it's a good idea that the 2 melanoma docs will put their heads together on my behalf. I am also praying that Dr M HAS had a case like mine she's dealt w in the past so she has some experience with toxic reactions of this caliber. And ideas too. So yes, I'm approved for clinical trials there if needed.
The "independent " neurologist is Kaiser, so is the Opthamologist I saw and who Dr C spoke with. Kaiser is all networked and the computers are linked, which makes it easier for all the docs to talk. In some ways, the concept is brilliant from a convenience and one stop shopping perspective. In other ways not so much.
Of course I know what a blessing it is to have been relieved of pain. Living with bone and lots of spine tumors, rib lesions and a liver SO HUGE and swollen it was crowding out and squashing my lungs caused me 2 months of excruciating pain comparable to nothing else. I was bed bound on a heating pad or ice and wearing a battery operated heated vest just to get to the doc appts and tests. Morphine was like taking an aspirin for surgery....did nothing for the pain level. I'm so Sorry your bil is suffering. I had decent results (from a distraction standpoint) with CBD w thc gummies, 5:1 ratio from Fivecbd.com
The blessings from God and the oncology dept have been many, and I'm grateful. All along I've prayed and asked for prayers from all who cared about me. Any prayers to any higher power will do, in any form at any time. No caveats on that.
The prednisone has been increasing my dizziness the past 10 days or so, I'd say.
I'm hoping and praying that today and every day going forward will be a better day!
Some seem to have a difficult time withdrawing after only 4 days on the drug; talk about a POWERFUL medication. For good AND for bad.
I am hoping you are feeling better today, third day of your titrating down. And I guess if you aren't we at least know there is a reason.
Looking forward to your updates.
Accupuncture has proven so beneficial in our lives, I, highly, recommend giving it a shot.
I, also, highly recommend accupressure if you can find someone that is good at it, feels like an Angles touch when done right.
I have a neurological chiropractor that dealt with my dizziness when I had a bad reaction to the hernia surgery I had. I felt like I was falling over all the time, even though I wasn't, it was my body and brain, I thought I was having strokes it was so bad. One visit, a couple of tweeks and I was good as new. He, also, taught me how to do the tweeks to recenter myself if it came back, which it did for a few mornings and I did the fix on the side of my bed and didn't have any issues during the entire day, only when I 1st woke up were things out of wack.
So, YES!!!!!!! Use all the alternative options you can afford, because good alternative medicine isn't like modern medical mainstream, you don't just get on a hamster wheel of tests, appointments and referrals. They make a plan and it is, in my experience, over and done within a week or two.
Contined prayers that you go back to a great baseline and get your quality of life back.
This scripture always speaks loudly to me.
Trust in the Lord with all your heart and lean not on your own understanding;
in all your ways acknowledge him, and he will make your paths straight.
Do not be wise in your own eyes; fear the LORD and shun evil.
This will bring health to your body and nourishment to your bones.
Love and ((((((hugs))))).
Proverbs 3:5-8
If I'm in remission right now, I feel like I've witnessed a miracle. To come from deaths door on 2/1 to a place of no pain by 4/1 is miraculous. Dizziness aside......I can rest my head and NOT feel dizzy, meaning I have respite. Dizziness never killed anybody, as far as I know.
I'm walking almost exclusively w/o the frame now, too. I cleaned the kitchen counters earlier and wiped down my stainless steel fridge and dishwasher, my arch nemesis. Whoever invented stainless steel must be a sadist 😑
I've had no surgeries and only 2 treatments in all to date. The first tx produced pretty mild side effects but must've killed off a lot of cancerous tumors and lesions for my blood numbers to have improved to this degree.
I just feel grateful today for the blessings that God has bestowed upon me. And grateful to all of you guys for the support.
As an aside, ITRR:
"Accupuncture has proven so beneficial in our lives, I, highly, recommend giving it a shot."
LOL. I hope you did that little double entendre mixed in with the positive message about acupuncture on purpose! Very nice play on words!!
Wishing you a peaceful, wonderful weekend! :)
Lea, I recall you asking about Kaiser and acupuncture referral? And payment?
Here it is a yes, and for my son-in-law they let him do it for plantar's fascitis--Washington State. Didn't work, so he is off for the expensive orthotics after the year we all spend messing with other options, but he loved it and said he would pay to do it for fun. Just claimed it was incredibly relaxing and put him to sleep almost every time he got it.
Just to let you know our Kaisers are good with acupuncture.
Thanks Hope! Happy weekend to you as well.
Notgoodenough says, As an aside, ITRR:
"Accupuncture has proven so beneficial in our lives, I, highly, recommend giving it a shot." 😂🤣😁
Alva, today I didn't need a Xanax but the Cray Cray dizziness after the pred has been wretched. No magic way thru the taper.....just suck it up one day at a time 😣
We're off to see my son and grandson tomorrow and then asking DD to come by w the bf for pasta Puttanesca which is her favorite. Planning a good day and a restful Sunday for everyone here.
Ah, Puttanesca is the best, and the more heat the better. I love heat in any food. Then of course, there is just the NAME of it, which I am totally enamored of. I love arrabriata as well.
I am not a joiner, but I thought maybe I needed to sign up and tell you that today I was demolishing a bedroom in my home which is being remodeled. I was tearing the window trim off and there, as I pried the sill up, was a dime. I immediately thought of you.
As much as I prefer to lurk and read privately, I knew I needed to come by here and drop that dime in your piggy bank. I wish you the best in your treatments and for a full recovery.
Ty again for brightening my evening.
I believe if Lealonnie1 said smelly socks brought her good luck, forum members would be searching for smelly socks. I urge caution with that.
Quoting Lealonnie1 for context, "Any prayers to any higher power will do, in any form at any time. No caveats on that."
Hope this is simply political correctness at it's best Lealonnie.
Yes Fawnby, scattering dimes all over the place is cheating. At a very scary time in my life when my father was dying, I was asking for help from God and his deceased siblings.....signs that I was doing the right things for him. Those signs came to me in a few different forms, one being that I'd find dimes when I was most needing guidance. I'd feel comforted by those signs, too. It's not "faith in dimes" but faith in signs from above. Hope is something easily lost but very hard to find in times of stress and chaos. If you think signs from above are silly, that's fine too. But I don't, and have chosen to share my experience even WITH the threat of ridicule. Nobody "has to" subscribe to my beliefs, I'm just telling it like I see it.
Here is a link to one of MANY articles on the spiritual meaning of finding dimes:
https://spiritualdesk.com/what-is-the-spiritual-meaning-of-finding-a-dime/
BTW, hope your day is off to a good start 🤗
((((Hugs)))))
AND people, we have a new crop of trolls. Don't feed them.
2 Corinthians 1:3-4 - Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
And here is some glitter for you!
A life without glitter is no life at all.
A little glitter can turn your whole day around
When you're around me, you're going to get glitter on you.
Even dirt glitters when the sun is shining upon it
Personality is the glitter that sends your little gleam across the footlights and the orchestra pit into that big black space where the audience is. Mae West
Have a good day!
cc to Barb, CWillie:
I love you. Thank you.
This thread was created with such love. It has been filled with such beautiful stories and with so much joy, heart, support.
Can we just step over those folk, step around their manure spreaders and wait for the flowers?
There are so MANY GOOD PEOPLE here. It takes no genius to know who's who. Let's just rise above them, so Lea doesn't have to shut down this thread.
Speaking of the "one we love". Good morning, Lea.. Day FOUR of the first titration. Are you still a dizzy-dame, or is it better?
Have fun with your grandson and the family. Remember, it's social media without a blocking button. It was BOUND to happen. Small, pathetic people abound in our world, but an army of good people surround you in a massive hug every day.
Shields UP!
(OK, I did watch the latest The Last Kingdom last night)