GRRRRRRRRR I HATE LE..........

carlads

Hi Ladies,

I have a strange question.  I do have LE went to PT in June and it did help.  Here is a quick history.

BMX in Dec 2012.  I had 1mm in my sentinel node, they took 22 all clear!! I had 6 cycles of T/C done the end of April. 

Here is my question.  I had a tumor marker done the end of May it was in normal range.  Then I had another one done the end of July and it was elevated CA 27.29 oncologist said any inflammation in the body can cause it to rise.  Could LE cause it to be elevated?  I was only out of chemo 3 months when it was elevated.. 

Any thoughts?

Carla

BeckySharp

GMA--I think nice blouse and slacks would work.  Don't panic.  Be confident!

Bocce ball is fun.  Go to YouTube and search How to Play Bocce.  It shows a game and how to play.  Played outdoors.  Maybe you can plead arm cannot tolerate and just watch. 

Linda-n3

GmaF, nice shirt and slacks are good, you might "dress up" with a pretty scarf. I use a long scarf around my neck, tie a knot in front to keep it in place, camouflages front issues, can be worn around shoulders if I get cold, drapes over LE arm too. Not sure I would participate in Bocce ball, not sure how heavy the balls are and which muscles you use for throwing them. I would definitely err on the side of caution, but have a drink and cheer for your colleagues! And have a good time!

GmaFoley

Ok Ladies - I have one dressy blouse and slacks for those occasions and the funny thing is the slacks I bought and had tapered legs were actually capris LOL they fit me perfectly as slacks - on the clearance rack.. I bought 3 pairs to wear this week kakhi, black and blue.  One pair of jeans.  I have a load of my blouses (I am wearing one in this picture) here is a few of them..:

Ok off traveling.. Don't know if I will have time to check in. With this corporate meeting, I have to use  my free time wisely.

Linda-n3

GmaF, you look fabulous!!!!!! Enjoy those ritzy dinners on the company's dime! Get plenty of rest, drink lots of water, and check back in with us when you can.

carol57

GmaF, I love the hats in that photo! You look spectacular.  Best wishes for the meeting!

Jeannie57

GMA_Foley, live the blue sleeve! I may have to get one of those! Or in my case, 2 of those! Have a great trip!

BeckySharp

Have a great trip!!!

Teresa_G

GmaFoley - Check this link out, it will explain Bocce Ball to you and even has some pictures.  http://www.ehow.com/how_3109_play-bocce-ball.html  I have played Bocce Ball before, it is an ok game.  You are throwing a ball that is fairly heavy but not extremely heavy.  Maybe you could through with your other arm?  I know it is hard to find clothes that look really good on you when you just have one boob.  I finally got my tissue expander in place.  I heard this suggestion when I first started going through all of this.  You can take a nylon and put rice in it, fill to about the size of your other breast and put in your bra.  The weight of the rice will help give it more of a natural look.  I haven't tried it but I heard it from a couple of different sources.  Good luck with getting through this.

Janet_M

GmaF - You look great - and I love the blue sleeve! I think you are travelling today and I wanted to wish you good luck.

I just came back from a short getaway which included several flights - my first since the LE flare up in my arm and hand. Thanks to the glove (recommnded here) and sleeve, everything went well. However I did get selected randomly for a patdown, and I told the security gal that I'd had surgery and motionned to my chest and mid section. She took one look at my sleeve and smiled knowingly, then gave me a patdown that was so kind and gentle that I felt like a kitten. 

nibbana

Ohhhhh do I hate LE. Let me count the ways. 

I am leaving my job after almost eight years because the job is too physical and not good for my arms. Today, I'm working and my hand is swelling and it starts to hurt. I tell my boss I have to go to urgent care. I get to urgent care and this B&*@%# doctor says "you only have two more days on the job? Well, don't go to work."

So, LE has just ended my career. Thanks a lot LE, you suck. 

carol57

Nibbana, I just don't know what to say.  I'm speechless. This turn of events is really, really awful.  Hugs winging their way to you from my corner of the country...

BeckySharp

Oh I am so sorry. I had to go from full time to part time work a few years ago due to the amount of time it takes to keep LE under control. It is so frustrating!

GmaFoley

Haven't had time to check in. Meetings and work (overtime). I only have a bit of upper arm and breast swell after the flight. It was a full flight i call it my flight from hell!!! But did survive.



This is a party company. Had to adjusting hours this week. Party meetings in the evening. Keeping up with my MLD taking a break from the sleeves today. Flying to son's home tomorrow then driving home Saturday.

Linda-n3

Hang in there, GmaF! Are you becoming a party animal, too??? Have a good weekend, hope you get some rest when you get home.

Jeannie57

Nibbana, so so sorry! I hope something else comes along that you enjoy. Doctors are crazy when it comes to LE. Many just don't get it. I have bilateral LE, too, and it does really suck. I was at the zoo today for a company picnic. I get so tired of the stares and questions. I answered one question and then overheard the guy's friend say, " I'm glad I don't have to wear those!" Well, duh.

nibbana

On a brighter note...

I will be able to retrain for another job through the VA. I'm going to go back to school and will retrain in something that takes more brainpower and less braun. 

So, LE took away on one hand, but I have another opportunity on the other.

Jeannie57

Nibbana, now that's a positive!

BeckySharp

Great Nibbana! Happy to hear Gma is doing okay.

carol57

Nibbana, wow!  Is the new career something you're excited about?

Janet_M

Nibbana - That's so cool! I have the same question as Carol - are you excited? Do you know what you'll be studying. It's so great when another door opens.

TAMMYNUMNUMS

I do hope you get better soon..Its so sad so many women suffer from breast cancer...xxxx

ohio4me

Heat and humidity are bad. Wearing sleeve and gauntlet make it all worse! Wearing those things makes me overheat in minutes! When I overheat I get irritable. When I get irritable I don't even like me.

Sleeve is off.

Linda-n3

Ohio4me, my LE therapist and my new fitter have both come to the conclusion that I am sensitive to pressure, and have recommended that "less is better" so have changed recommendations from compression class II to compression class I, and I have been a little rebellious the last couple of days myself because of the heat. I hate that I cannot go out to sit by the pool without arm throbbing. Pool is still too cold for me to actually get into it (too much rain, too many cool nights, now super-hot but not enough to warm the water to arthritis level). I hate not being outside all day, I hate being in air conditioning all summer. Without sleeve, the heat and humidity make the arm achy, with sleeve or bandages (most of the time still yet, maybe my new sleeve will work, due next week) it is hot and irritated skin and I can't DO anything with the garden or simple chores. I am sick of not being able to wear light sweaters in super-air conditioned stores and restaurants because my hand just won't fit through the sleeve, so am using my fleece shawl, carry it everywhere, feeling a bit ridiculous.



Do most of you actually get to a stage that is stable enough you can get back to almost normal activities? Is it a matter of occasional flares that require many hours a day of care, or is it a constant 4 hours a day to take care of the arm forever and ever, amen???? Am I just fighting it too hard? It has been 4 months, I have received and returned countless gloves and sleeves of every brand, including custom Juzo (on my 3rd try right now) because nothing is working and makes things worse.



Do I just need to be patient a little longer? I have read that some of you took over 8 months in bandages to get back to normal, but I am not sure my sanity can endure this torture for another 4 months, and maybe not even another few weeks! Thanks for any encouragement you can offer. I am still trying to focus on the positives, but every time I have to bandage or put on garments that are uncomfortable, it just triggers the bad emotions, then after a couple of hours, my system sort of adjusts to the sensations, and I try to find something I CAN do (mostly observational stuff, and I am really sick of TV!).

Janet_M

Linda - The only positive I've got from LE is that I didn't have to play 18 hole mini-golf last week with the in-laws. Other than that, I just try to suck it up. 

Here's a stupid question - are you doing self massages? I've got swelling mostly in my hand, and a bit in my arm, and I'm still trying to figure out the magic combination that works for me. The gauntlet absolutely did not work, in fact it made it worse. The glove and sleeve are pretty good, but I'm finding that LE exercises are the most effective.

It's also a stinking hot here this week, so my entire body is irritable. The sleeve certainly doesn't help and I totally understand your frustration about being house-bound and having clothes that you can't wear. I've been living in the same two linen blouses since my surgery in June, with the occasional sun-dress thrown in. However, it's more of an 'indoor dress' than a 'sundress' since I haven't actually gone out much in the sun this year at all.

ohio4me

I do okay with the compression without heat and humidity. When it's hot - my arm is more unhappy with the sleeve and gauntlet then being free. The sleeve just adds to the heat and and no one is happy.

carol57

Ohio, mist your sleeve and gauntlet and see what you think of the evaporative cooling effect that gives.  I dunk the whole arm in the water when I'm paddling.  If it's really hot, the sleeve dries/evaporative cooling fast enough to avoid any worries about fungus, or whatever we're supposed to worry about if we live in a wet sleeve.

(But I sure 'get' why you want to toss the sleeve!!!)

GmaFoley

Well sitting at the airport with all the compression garb on looking at what my LET calls "muffin tops". The shoulder area is puffy. I pray things don't get worse on the way home.

Marple

Gma, you are on you way and know what to do while in flight.  Hopefully you don't have kaka to deal with when you get home. 

GmaFoley

Marple you mean drink water and pump hands??? Any thing else?