Some GOOD News for once

cookiegal

I know I am kind of a new thread whore, but I just thought any good news with this LE is encouraging.

Doctor's app went VERY well today.

Though I just lost around 5 pounds she said "that was better than a kick in the head."

The even better news, she now considers my LE mild!

The lower arms are about the same, the difference between the uppers is 50% less. (I guess I am around that magic 2CM mark down from 4CM)

She says we do not have to "treat it aggressively" meaning I can hold off on the CDT for now.

(That is a BIG deal for me, I would have had to not work, and getting 2-3 weeks off could have almost cost me my relatively new job, plus the bandages just were not working!)

More good news, she says while I still need to wear compression as much as possible, I do not need to wear it 24-7.

She thinks I will be able to get away with not wearing a sleeve more than most people. She said if there is a special occasion or even a day at the beach, to go for it, just be careful I am not getting worse.

She also suggested I get a custom gauntlet and said that if I keep an eye on my hand it is ok to wear a gauntlet regularly.

I still have major sleeve issues....we have not found a sleeve with standard compression that does not make things worse. Hopefully the custom sleeves and the juxta fit will help.

So it was a good day, my husband took off to go with me, our 3rd anniversary is tomorrow, so we really had something to celebrate tonight with the good weather out east.

Anyhow thank you ALL for all the support. It has been a crazy 9 months of trying to get a DX.

Until today I really felt like things only got worse with LE, so there is some hope that if you work hard at managing moderate, you can see some improvement. 

Now I just gotta get through the oncologist tomorrow.

sushanna1

Congratulations.  Nice to hear some good news for a change.  Good luck at the oncologists tomorrow.  

Sue 

kira66715

Yeah Cookie!!

Happy anniversary and it's great that it's gotten better and will get better still! Hope you have a great celebration!

Kira

Binney4

Cookie, I'm so happy with your news! Celebrate big!
Binney

cookiegal

Thank you ladies so much for your support. I would have gone bonkers without you!!!

BoobsinaBox

So happy for you, Cookie!

Dawn 

Nordy

Cookie - Hurray! That is GREAT news!

hymil

Very happy dance for you Cookie! Great news and you certainly deserve a thread of its own, there's no "only" about shedding 5 pounds.

imbell

Welcome news. Congratulations. Time for the happy dance.

Suzybelle

Awesome news, Cookie!  You deserved a break.  And you are not a thread ho, girl...I think that's me. 

cookiegal

So it was interesting to get my onc's perspective on this.

He is a big research guy and I was hoping he could tell me something promising was in the pipeline. Instead it kind of confirmed my feeling that breast cancer researchers have other fish to fry.

He explained to me that in terms of evolution, humans were most vulnerable to bacteria, and that's why the body likes to shut things off.

He said he could tell I had it in the upper and lower arm due to the difference in my silverwave grooves. (That is one benefit of the silvewave you get a constant basis for comparison.)

He said that I had done the right thing in being aggressive about treatment, and not to let up, to avoid the fibrosis. He said if I keep doing everything right I may be able to keep it from advancing.

Thanks for all the good wishes!

kira66715

Cookie, even better news from the "mad genius".

When I think about where you've been with this arm, it's so great so hear about the progress and understanding you've gained. Remember when no one could explain it?

 I didn't even pick up on the thread ho reference until Suzy mentioned it: I do believe that honor goes to me.

Kira

BeckySharp

I am happy things are going your way Cookie!  Happy anniversary.  Becky

cookiegal

It's funny...when I got married in '08 I was active on a wedding message board....we kind of made every little thing a new thread...when I was on just diagnosed it was gently suggested to me that I stick to one thread and not start threads for every question.

Ironically just as I was expiring on the "newlywed board" I came here.

What's funny is in so many ways they are kind of similar. Picking a dress...picking a surgeon. Picking a hall..picking an onc. Picking a menu...picking a chemo. And so on!!

Still kind of wish 'MG" was more into lymphedema research. Gotta figure out a way to make it about math. He REALLY likes math.

kira66715

Cookie, internet etiquette, who knew?

The Lymphatic Research Foundation is sponsoring a lecture at Children's Hospital in Boston tomorrow night, and will ultimately put the video of it up on the web--they're a purely lymphatic research foundation, a good place to start.

The link to the symposium is on the right of the home page

http://www.lymphaticresearch.org/main.php?menu=&content=&txt=Home

For me, my diagnosis and weddings are linked, as I was diagnosed 4 weeks before my daughter's wedding--she did all the work of organizing it, and I had my surgery a week after diagnosis, so I'd be in okay shape for the wedding. We have tons of photos from it, and I didn't have LE yet--that came the next week when I took my sister to the beach on a hot day and got bug bites, and I look at the beautiful pictures, and stare at my arm--how weird. Well, I got an amazing SIL out of the deal--he drove us to Logan last week, and they watched our dog and gave her a bath and blow dried her. She went to the spa.

I know I post a heck of a lot--likely too much--so I'm sure I'm blowing internet etiquette a lot.

Kira

cookiegal

Kira I think we will borrow Outback steakhouse's motto....no rules just right!

I think what the meant was have one "just diagnosed" thread with all my questions..instead of 5 threads.

So we went out to dinner when my husband got home from work.....one short block from where we live in NYC....and some idot on the street bumped my hand really hard and hurt something by one of my knuckles....(He was racing to his limo)...and it swelled a little bit. I'm gonna ice it and wear a glove to bed and hope fate is not that freakin cruel. 

kira66715

Cookie, hope it's all better today. Yesterday I was teaching on campus and walked by the site of my hand fracture, haven't wanted to go there since, and it's a weird set of steps that go up to the sidewalk--long flat stretches with random rises--so I looked at the scene of my debacle in the daylight, and thought "Of course that's treacherous at night!" No wonder they were freaked that I'd sue them....

Fate will not be that freaking cruel--hey, let's start a new thread about it!

Be WELL and proud ("it's no kick in the head") of all you've accomplished.

Kira 

cookiegal

thanks...it seems fine today...it was raining really hard and this guy had a driver waiting and he just kinda slammed me...on the way to our wedding anniversary dinner.

Not swollen...wore my medi glove all night...now I head back to work,

Have a great day!!!