
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.
My advice to people w/o cancer who are faced w "mab" treatments is to think long and hard before automatically nodding your head to such a treatment. What you wind up with afterward may be worse than what you started out with beforehand. Especially if you have a sensitive system to begin with!
Golden .....a trip to the mailbox on my own 2 feet in the fresh air sounds divine 😁 I will rejoice when (not if) that day comes, and when I see my CHEEKBONES in the mirror again. And one chin.
Thank you for your prayer cxmoody. My impatience won't hurry anything along, I know. I just WISH I knew this would end at some point...to have that knowledge would help SO MUCH in bearing this load. But its not in the cards for me to know. 😏
My stepson came by yesterday with Snarfs sandwiches which was nice. My snarkiness due to withdrawal symptoms wasn't over the moon so I didn't rip his head off. I'm sure he was grateful not to see a wicked stepmother in the flesh! Ha! Chuck took him out back to the pond area to see the herons who hang out there. The photos he takes are like dioramas you expect to see in a museum and not coming straight off of a camera from your backyard open space area. We are fortunate to live in an area populated by beautiful wildlife.
"Steroid drugs, such as prednisone, can cause weight gain in the face. They can make a person's face look swollen, puffy, and round. These symptoms usually go away once a person stops treatment."
We often get caught up in how we feel and that doesn't mean squat, only HIS words matter and HE has already healed you, proclaim the healing and victory in Jesus' name.
Keeping you in my prayers, as well as everyone else here.
Great big warm hug!
Gotta also love the word "usually" which actually means "may or may not" go away. Often used in the medical industry by doctors who Don't Know The Outcome or Prognosis of a medical situation. 🙄
My daughter in law is coming over with my grandson here shortly for coffee. She's had her toxic mother visiting from Cali for the past week who kept saying she should "slap that baby across the mouth" for being a typical 2 year old! Who says such things? And how grandmotherly fgs! I'm glad she feels comfy coming here as a safe place to relax and hang out.
Ty to everyone else for the prayers, they are very much appreciated as I struggle thru my days.
I get the whole quality of life versus quantity of life thing.
No one wants to live and be in pain or miserable for the rest of their lives (well sone people might). What the hell is the point in that? I would be pissed off too Lea.
My DH got cellulits from a broken blister and the first medication gave him excruciating 10 plus level pain in his back and muscles. So much so that he said he would rather let the infection take him them live like this. And he is 100% an optimist as opposed to my 100% pessimism. Lucily they got him on a differnt med and after a few days the debilitating pain went away.
You've been dealing with this for months I can only imagine how much that sucks to be cancer free but with all these damn side effects.
We can thank God for getting Lea this far. But she still has a way to go. Gods time is not our time.
The Lord bless you
And keep you
Make His face shine upon you
And be gracious to you.
The Lord turn His
Face toward you
And give you peace.
May His favor be upon you
And a thousand generations
And your family and your children
And their children, and their children.
May His presence go before you
And behind you, and beside you
All around you, and within you
He is with you, He is with you.
In the morning, in the evening
In your coming, and your going
In your weeping, and rejoicing
He is for you, He is for you.
.
The irony of being "cancer free" but having no life as a result does feel like a cruel joke, yes. So that's the bottom line.......do I want to live like this permanently? These are the decisions many cancer patients are faced with, as I read about on my fb melanoma group page. I don't know how this will all play out in the end, but I do know that nobody can say HOW they'd react until and unless faced with such a situation. Which I hope and pray does not happen.
One day at a time is and has been my philosophy. If I have no relief by next IVIG, I'll go to the ENT for vertigo treatment like the Epley Maneuver so I can say I tried. Even though this isn't "vertigo" it bears common traits with vertigo.
Was at a seminar on vestibular PT the other day. The doc lecturing mentioned the 4 maneuvers that help with vertigo (I know you don't have vertigo).
https://www.webmd.com/brain/home-remedies-vertigo
He said many PTs don't know anything other than Epley. It's important to find a specialty PT who knows this stuff.
Also, have you been seen by a neurotologist? They are MDs who specialize in the inner ear/brain connection.
(((Hugs)))
https://www.cumedicine.us/specialties/otology-neurotology-otolaryngology-head-neck-surgery
Big hugs, and may your dizzies take a hike, already.
Hoping that you will start to feel like your old self again soon. You have lots of catching up to do!
What are the first things that you would like to get back to?
Tell us what they are and we will dream about them with you.
I am guessing that the first thing on your list would be to be able to spend more time with your precious grandson. They grow up so fast.
Take care.
Nhwm.....I'm looking forward to not feeling dizzy. That's what I'd like to get back to: a day where my head isn't swimming and I don't feel dead drunk and careening all over the place to stay balanced. Or needing a walker in the shower. That's it for now. Dream along with me for that day to arrive and then I'll say what I'd like next. But for the moment, it sounds like pure joy just to not feel this enormous dizziness.
I get that! It has to be miserable to feel like you are on an amusement ride without being at an amusement park!
Do you remember when we were kids, how we loved the sensation of being dizzy? Oh my gosh, I used to hold my arms stretched out and turn in circles really fast until I would become dizzy. Rides? I was the kid who got off the ride and ran to get back in line to ride again.
Now, as an adult? Eh, no thanks!
I hope your dizziness fades away soon.
Was just reading something that said, amongst a great deal of other things, that prednisone can be especially hard on those with CFS/FM.
I guess!!!
How we take things for granted - like a walk to the mail box, our cheekbones and a single chin, until they vanish. Praying for the above and a nice little walk, without any dizziness, in the fresh air for you. 🚶♂️
So I've decided to quit using my walker UNLESS I'm having a horrible day titration wise. I think my weird oddly wired brain needs to adjust to this dizziness as its new norm for now w/o relying on a walker. I'll still bring it in the shower bc it's too dangerous not to....I need something to lean on getting in and out. So it's scary to watch me walk, basically, but I'm walking unassisted. Tomorrow I go down to 35mgs of prednisone (I'm doing the 5mg instead of 10 plan) so the walker will likely come out again....but that's ok. One day at a time.
Whats on your agenda for the weekend? Nothing for us. I have my housekeepers here today which is always a bonus and Chuck is not allowed to cook on Keep The House Clean Day. 😂🤣😃
That misohonia sounds awful and like something I read about in that same article actually - the triggering of emotions by something "normal". How dreadful for you. Not something I have though I am sensitive to sounds and light. Right now I can't even listen to my fave music. I NEED silence. ADHD - my family is riddled with it.
Good luck going without the walker. I understand your reasoning. That's embracing the new norm! I hope the smaller steps tapering off prednisone help.
Plans -what are plans? lol. Day by day I go with what I can do. These days I have to be careful. It doesn't take much but the stress of normal life to set off the fatigue, sore throats, muscle pain, brain fog etc. What's new? I have some online banking to do. I know exactly what I have to do but my brain is saying, "Nope, take a nap!" I am usually better in the later afternoons so I take it easy until then. No appointments before 2 pm.
I filled up some bags of clothing for the thrift shop yesterday. Taking them down is another job. I do a mental check over the week - if the plants are watered, the cat litter box clean enough, my laundry done, (more or less), there is food in the fridge, supplements in their reminder containers, I am bathed, etc., bathrooms and kitchen are acceptable, floors reasonable, the lawns watered, and I have made a little (or more) progress with the move, I am satisfied. Oh, and the banking and any other business looked after, and a visit to dd. That pretty well takes up most of my energy. Week-ends, week days - all the same to me.
Some days it's just hang in there till the brain fog etc. clears and see if I can get something done. I have learned that doing things in small steps still gets them done eventually. I am hoping once I am settled in the condo I will have more time for - ???? - other things. The challenge right now is to get there without making myself sicker.
I do plan on getting a housekeeper once I am in the condo. I have earned that!!!! 😁😁😁
I read the Feb update and responded at the time. @lea still wishing you a full recovery from all the therapy around the beauty spot. There may have been further updates and your therapy maybe over. I think I missed those posts.
I read you're feeling dizzy, I guess this is from some form of medication you're on. wishing for it to get better and go away.
@needs I concur the spinning around like a top as kids, I haven't tried it for at least 40 years I think. I might try just to see if it invoke an memories, I hear balancing exercises are to be practices more as we age. If you balance on one leg, with your eyes open it's fine for most people, as soon as you close your eyes, you completely lose your balance.
best wishes @lealonnie1 wishing you continually get better, keep that dime with you always.