
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.
Your warmth is felt by Lea and this forum even when you take time away to do what is necessary.
It's tough to have patience when every day brings no relief, you know? I'm sure YOU DO bc you had actual brain surgery I was not subjected to.
I found your post helpful and want to thank you again for your kindness
And while recovering there were quite a bit of issues for several months. I believe this was due to nerve trauma, as so many nerves were cut and were very sensitive.
Extreme sensitivity to sound was one of them. That lasted a few months. That was just awful, but as my brain started healing and calming from the trauma, it went away. Also had sensitivity to smells for months. Smells made me very sick. That eventually went away. I was dizzy for awhile, but I think that was because my eyes both swelled shut at first and I couldn't see anything for a few weeks unless I held my eyelid open with my hands. Walking was hard, had to hug walls to get to the bathroom at home. Plus, there was weakness and exhaustion that went away, too.
Over time, all of this stuff slowly faded away ... so hang in there. Our brains are very sensitive to outside stimuli, but they can calm down over time. With rest and in quiet - and time. Sounds like you are doing very well so far!
Cold compresses on my eyes helped with the swelling, and was very calming to me. I was in bed all of the time at first, and would lift my head a little at a time to help get used to the nausea and dizziness. I was never on prednisone, though. So can't answer that part of your question.
But, one thing I learned is that the brain doesn't want to be bothered! Either by surgery or illness. But, the effects tend to get better over time as your inflammation heals and fades. Many years later, I still have a plate in my skull and am doing fine now.
Best of luck to you as you continue to heal and thrive, and I hope this post was helpful to you.
I appreciate that info. I will look into it.
Fawnby, I've had no stroke TG....multiple scans and MRIs have proven that. The trauma that's occurred is to my central nervous system which can cause a TON of horrible side effects, I know. The light, sound and odor sensitivity being some of many.
I will also speak to Dr C about Paxil or something similar next week, although I feel like he'd write me a script for arsenic if I asked for it. I want to be sure the sensitivity issue is ongoing before I take an SSRI though.
I read a post from a gal in my Facebook group who had a craniotomy last August for brain metastasis I guess, Idk. Ever since, she's felt dead drunk! She's able to function, however,,,,,,walk, work, etc, she just does so while feeling drunk all the time, then not remembering a lot of what went on! She was saying she's been to 20 docs all who have no answers for her. She was wondering if anyone has a similar experience to share. Raises hand. I didn't have skull surgery or brain Mets, but yes to drunken feeling 24/7. Except I can't walk 15' w/o a walker. What a rotten position to be in.....her going on a YEAR with this crap! Disheartening to say the least.
Golden, ty for the supplement info. I don't have much pain to deal with, brain fog, etc..... it's the hyper sensitivity to noise, light, odor ( bedroom door has to be closed if Chuck is even boiling eggs) that's plaguing me currently, and the profound dizziness that doesn't let up. I had a friend em me today suggesting "counseling and exercise" to cure me and I literally laughed out loud. Not that I found the suggestion funny. Quite the opposite. People hear "dizzy" and they think Oh Big Deal! Too bad it IS such a hugely debilitating Big Deal that 2 hospitals full of medical experts can't figure out how to cure but Counseling.com will do the trick, eh? It's absurd we now live in a society where we actually believe Talk Therapy can cure EVERYONE of EVERYTHING! My ex MIL was a licensed "therapist" with her own shingle, I might add, and one of THE most unhinged humans I've ever had the displeasure of knowing. Laughable thought to pay her $$$ for advice.
I also asked Chuck if he could erect scaffolding around my exercise bike so when I Exercise To Cure Myself and begin to fall on my ass, the scaffolding will catch me! 😑 Hopefully I don't break the rest of my spine in the fall.....
I'm just being sarcastic....I am NOT referring to ANYONE here who gives me useful and helpful tips or supplement ideas, etc. Just to family and friends who think I'm making a mountain out of a molehill or something. I wish my situation on them for ONE 24 HOUR PERIOD OF TIME and then we'll talk again. Ha.
The sensitivity to noise and light sounds miserable. I have awful tinnitus. I have had it since my 20’s. I absolutely hate silence because then I notice the awful constant ringing in my ears.
I have adapted to it if I am surrounded by sound. I always have music on or the tv. I need some sort of background noise in order to cope. I do have some hearing loss as well. I really should see an audiologist.
I hope your situation clears up soon. I sneeze constantly due to my severe allergies. You would hate being around me! My husband says that we should own stock in Kleenex!
Exercise is one thing that helps but, like you, Lea, I cant exercise, so I have looked for other things like stress reduction by deep breathing and supplements
Ongoing prayers. God is working even when we don't feel or see it.
"indeed, he who watches over Israel will neither slumber nor sleep. the sun will not harm you by day, nor the moon by night. the LORD will watch over your coming and going both now and forevermore." Psalm 121 1
in here for whatever it’s worth.
I too have a take on hypersensitivity to noise and light as it's part of CFS/FM.
I keep lights low and startle more when I am having a flare up. The hypersensitivity, muscle pain and brain fog of FM are related to brain inflammation as I understand it. You have said you have FM. You also have brain inflammation from your treatment, Brain inflammation can be helped.
I found it interesting that you said Paxil helped the startling. I have been on low dose antidepressant (Luvox) for the FM. It helped the pain. I am now weaning myself off it as I found it worsens arthritis. I have been off it before and then the FM got worse, but this time, with the supplements I am taking, I am not having any flare up symptoms. I gave you a list of supplements before but have refined it to make sure there is no interaction with prednisone. Sending you that information - covered in glitter!
I emailed ya with my explanation.
🙂
https://www.amazon.com/s?k=loop+ear+plugs&crid=MH15LWOH5CK3&sprefix=loop+%2Caps%2C124&ref=nb_sb_ss_ts-doa-p_1_5
There are various noise reduction levels.
I carry them in my purse. Saves me when noise is making me want to jump out of my skin.
They are even pretty in one’s ears.
On another note, the IVIG infusion is Thursday at doctor Cs office. Here's hoping he gives me the correct infusion based on the one Unhealth ordered last month since Kaiser denied them doing it.
I hope your dizziness goes away soon and that you start feeling better soon.
I’ve been known to wear earplugs in the grocery store, and in stadiums, and sometimes, just if the people in my house are too loud, so I have a small idea of what you are suffering with that super-sensitivity to light and sound, friend.
Praying that all goes well with your next treatment, wherever it ends up! 🙃
PS: The man in my fb melanoma group who had a CNS toxic reaction to the dual immunotherapy treatment and wound up paralyzed, it took his body 6 months to get back to a somewhat normal baseline. He's still not 100%.....numb feet and gait is off, but he CAN walk.
Llama, still no sleep past dozing for me after 2 am every night. It's exhausting.
Chuck was gone from 4pm till 10pm yesterday at our grandsons play, which was great since my startle reflex was ramped up big time and his sneezing and coughing was sending me thru the roof. I was wearing earplugs while sitting in the living room. It's weird how my body is up and down from one day to the next and I never know what to expect. I think this is where the ivig helped me.....with the extreme sensitivity to light/sound that plagues me. It reduced the severity quite a bit and now it's creeping back in.
I'm still reveling in the feeling of having been part of a miracle lately, going from a dx of dying in 2 months time to being cancer free within 3 months time. No matter what side effects torment me moving forward, I will be forever thankful and blessed for this recent PET scan.
Today is yet another rainy ugly day in the Denver area which is unusual for us. Sunshine is our norm, but at least we're all GREEN instead of brown for once! 🤣😂
Happy Friday everyone! I hope you have some fun planned for the weekend 😁
Psalms 118:29
Lea,
There is so much to be thankful for in our lives.
I’m so very thankful that you have no evidence of cancer. It’s truly a miracle and a blessing in your life.
Actually, it is a blessing for all of us who believed that this day would come.
Hallelujah!
Loved your prayer, as well, Barb! Amen!