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No worries at all FG....the details are hard to keep up with. All these "mab" treatments we're inundated with lately on tv remind me of the ugly side effects the narrator talks really fast thru, hoping we don't hear that while the "mab" may help one thing, it may also kill us in the process. It's the price I was willing to pay to try and kick the cancer into remission, which happened, but at a cost. I was between a rock and a hard place. I heard Dr C say there WILL BE SIDE EFFECTS OF THESE MABS. The question is how bad and when they'll kick in? Well, the side effects kicked in on day 6 after immunotherapy mab treatment 2 and for how long? To be determined. 🙄

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.
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Scuse me, but you are so stinking funny, LL!
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Just some facts:
"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."
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Lea: Prayers continue, dear woman. ❤
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(((((hugs))))) Lea - praying for your cheekbones!
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LL, thinking of you this morning (as I have done since this post began)... praying for permanent relief of your symptoms. Praying for patience and hope and peace in your heart. And for the cancer to never return.
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Lea, just wanted to encourage you to continue to believe the promises of God, regardless of anything else. HE's already completely healed you, whether HE uses modern medicine or a miracle it's ALL HIS HEALING to you.

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!
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Golden.....my CHEEKBONES and chin(s) can use as many prayers as they can get 😄😅😉 we need a "bloated from steroids emoji" to get the point across I think.

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.
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Sorry but he's not doing a very good "healing" job since Lea is cancer free but messed up and cant really function on the day to day stuff.

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.
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Sending good thoughts that the dizzy goes away so that your life can be eased a bit. Your cheekbones will come back once the steroids are weaned from your body. In solidarity for the sans cheekbone look (which I'm already well on my way to) I am consuming extra Chips Ahoy. [Okay, that was meant to bring a smile, if it's obnoxious, please disregard.] :)
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Totally healed only comes in when your 5 years cancer free. Up till then its considered remission. Most people I think know what steroids do to the body. Always weight gain and a moon face. And anyone who has had chemo or has had a LO go thru chemo knows that there are side effects that can last a lifetime. My sister had to be checked out by a Cardiologist to make sure her heart could take the chemo treatments for 8 months. Other people I know have lifelong problems with their legs. Sometimes the cure is worse than the desease.

We can thank God for getting Lea this far. But she still has a way to go. Gods time is not our time.
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Ty, nope, not obnoxious. I've consumed way too many empty calories myself the past few months, mostly as a coping mechanism to deal with all these issues thrust upon me. There's a sort of "shutting down" that happens while mindless eating is going on. Blessed relief for a short period of time. No dizziness, no cancer, no decisions to make, no worries....all in a bag of Chips Ahoy. Would be funny if not so true.
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The Blessing

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.







.
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Sp, I was sweating bullets yesterday reading about vestibular issues that do not resolve on their own, which may be the case with me, idk. And how "rehab" is recommended but consists of learning coping mechanisms to deal with the new dizzy lifestyle you're permanently stuck with. Including but not limited to counseling, of course, which is laughable unless the counselor can make the dizziness go away so I can walk, drive, and resume my LIFE AGAIN! Which won't happen so......there you have it. Rehab teaches safety in the shower! Oh like bringing the walker in there, for instance, or having a shower chair? By the time enough weeks of debilitating dizziness occur, we've already learned coping mechanisms and as many work-arounds as humanly possible, I would imagine. How depressing to think "rehab" really means Suck It Up Buttercup.

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.
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LL, thinking about you today and catching up on your non-improvement😠.

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)))
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Lea, I'm so sorry that all the crap you've been dealing with has been an emotional and psychological drain in addition to the initial diagnosis. It's been a long, tough haul. Hoping it will pass or subside or something can offer relief. Hugs to you!
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Thanks for the link Barb. I saw a neurologist (many) and an ENT and an audiologist who all felt nothing could be done to help me since vertigo wasn't the issue, or crystals in my ears, etc. But no, I did not see a neurotologist.....never heard of one before. I wonder if KP has?
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UC has.

https://www.cumedicine.us/specialties/otology-neurotology-otolaryngology-head-neck-surgery
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Ok Barb, then yes I definitely saw them bc that was the dept that did my spine tests and surgery, and the neurological teams met with me during my 6 day stay at UC Health. I felt like they left no stone unturned, too.
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Sooo great that you are there for your DIL. What a legacy you’ve already given to your family, in helping break that toxic junk coming from her mother.

Big hugs, and may your dizzies take a hike, already.
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Just popping in to say hello and send my love.

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.
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I hope you enjoyed the time with your dil and dgs. These are the things that make a day great, something about being around little kids is just so pleasant. Even if they get cantankerous, we grandmas have the pleasure of knowing that it is not our problem, lol.
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True gg....sending the grands back home and restoring peace and quiet is a good thing!

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.
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Lea,

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.
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Lea, still praying.........
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Still praying for you Lea.
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(((((Lea))))) cheekbones and one chin it is. I am confident the cheekbones will appear and the extra chins will disappear.

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. 🚶‍♂️
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True, Golden, the things we take for granted in life are staggering. I realized that decades ago when I developed asthma and couldn't breathe. We take breathing for granted BIG TIME. Then when we are forced to focus on each and every breath we take, yikes, it's a nightmare. I do believe that folks w fm/cfs suffer more symptoms with EVERYTHING in general. I was reading up about misophonia which is a phenomenon that causes strong emotions and reactions to certain “trigger” sounds. Like chewing food noisily, utensils against plates, pens clicking, water dripping, etc. These trigger sounds can invoke feelings of anger and rage, even......I've dealt with this since I was a teenager never knowing there was a name for it! Ay yi yi. I think I'm a phenomenon that needs to be studied.....part OCD, part anxiety, part ADHD, and part insane 🙄 All I know is when I hear my trigger sounds, I'm like a wild thang needing to exit the area stat. Anyone else? Listening to someone eating cereal from a bowl and clicking the spoon is sheer torture to my ears.

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. 😂🤣😃
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Asthma is nasty I am concerned about R and the wheezing with his bronchitis. I've had allergic reactions that do that to me - you can't breath, so I carried sudafed with me always until I got on antihistamines regularly. Once I heard someone with strange breathing in the room - asthma like - and I realized it was me - no one else there. I had had a year of thyroid issues, insomnia and other stuff and I had had enough. Told myself - no way are you putting up with asthma too. It went away. Wish I could do that with other issues too.

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!!!! 😁😁😁
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Are folks commenting on the original update from Feb 2023 thinking it's a new posting.

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.
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