A General Observation:NY Times

Kira; Thanks for posting this!!      I hate to sound like an "ingrate" but I am sick of the "feel good" pink Octobers.       If I get one more pink kercheif, pin, charm or hat I will scream!    the $ spent on those items hardly went to breast cancer; it's all part of a "pink" gimmick.

the time for "breast cancer awareness" is not the priority anymore; it's outdated.    Now we need real money to fund real research.    and we deserve to know just how much a yogurt company is donating when they stamp that pink ribbon on their label (not that I have specific knowledge of anyh particular yougurt company underfunding breast cancer)

So I am glad the NYT was brilliant enough to publish this articel; as are you, Kira!!  

Great article!  Thanks for finding & posting it!      Deanna

I loved "Bright Sided," so I am pleased to see Barbara Ehrenreich quoted in this article. 

I always tell everyone I'm "pinked-out". Totally agree on so many points made in the article. And, Eileen, if we can have a GRRRR thread about LE, we can be equally annoyed about this. REALLY, buckets of fried chicken to support awareness? GTFO!! 

However, I was recently surprised to discover that Katie Schmitz's study on LE and weight lifting had received a Komen grant, which made me very happy. 

3jays; WOW! that's quite a story!  and I bet it's true.

Kira, I think this IS the right forum to talk about this. The fact that Komen has such a big impact on the focus of BC and the way the general population thinks about it -- and feels entitled to exclude a very important aspect of survivorship, one that's not all tied up neatly in a pink bow -- infuriates me!! As the saying goes, if you're not part of the solution, you're part of the problem. And as we all know, there's a lot of denial about the existence of LE among the doctors and professionals who treat us BC survivors. If Komen chose to let someone like Binney have an LE awareness booth (sans strings), it could make a big difference in the word getting out there about LE. I have to admit I sort of shudder when I think about the associations and implications that go along with being a Komen sponsor.

I have avoided the Komen walk because of all the hoopla. However, this year I participated to show support for a friend of mine who is struggling to live with BC. At the time, I remembered the discussion about Binney not being able to have a LE awareness booth, and I had planned to make a statement about lymphedema awareness on the shirt I wore. Unfortunately, I didn't get my act together, but I am definitely going to do it in 2011 (because I'm getting that break I deserve!!). I would love to walk with some kind of visual aid that doesn't make me look silly but makes people notice. You guys will help me plan . . . I will be a walking info booth, even if I just have whatever contact info you want me to have on my shirt.   

Oh, Tina, brava!!!

I never thought of just walking along being a LE billboard, but that'd work for sure. You could circulate, strike up conversations, pass out lightweight goodies.

Those LE alert bands are great -- free in whatever quantity you need, just tell them what it's for:
http://www.lymphedema.com

I want balloons too -- you can order them with messages printed on them, not too pricey. We could hand them out so people would have to blow them up to read about this "swell" condition. Pink balloons.

If you want papers to hand out, there are several (though they're hard to handle on a walk, unless you're pulling a light-weight luggage cart, maybe). Here are a few:

LymphNotes has a paper about LE in English and Spanish that you can print off free from their site -- it has risk reduction guidelines.
http://www.LymphNotes.com

Or you can run copies of the NLN risk reduction guidelines (http://www.LymphNet.org)

Or Jan Hasak's easier-to-read versions of the NLN position papers at the bottom of this page:
http://janhasak.com/lymphormation

As for the t-shirt, let's brainstorm about what we could have printed on them. The ovarian cancer people do let me have a booth (free!), and for that I have a banner that says, "Lymphedema -- ain't it just swell?" The idea being that it's a legitimate question, and they can ask it and get answers. (And, man! The ovarian folks have an even harder time getting their leg LE diagnosed and treated than we do -- NOBODY mentions the possiblity to them. Talk about a nasty surprise... Their doctors just say things like, "Sometimes a leg will swell after treatment -- we don't know why.")

You do have to be prepared for some resistence -- bc "survivors" sometimes seem to consider LE a kind of leprosy, and they have a tendency to "shoot the messenger."  Also, denial is rampant: "That won't happen to me, I only had four nodes removed." Or, "My surgeon told me I'm not at risk." Or, "I'm so thin it can't happen to me." Or even, "I can't get LE because it would ruin my life." (???)

I want a t-shirt! And maybe a hat, too!

Ideas, everybody?!

Binney

I agree Kira.  Thanks for the post. 

I'm tired of the terms like "boobs" and "tah-tahs" being used in these pink slogans.  I also wish there was more discussion of the causes of this disease and not just raising money only for treatment.  And, the lack of knowledge of LE is still there.  Almost person who has asked me about my sleeve had no idea that it could result from BC.

Tina, people with gynecologic cancers and prostate cancer run the same risks we do, but with legs. With prostate cancer surgeries and rads the LE rates are especially high, but men are not likely to ever hear the word "lymphedema," either before treatment or even once their leg starts to swell. As hard as it is for us to find good LE information, risk reduction tips, diagnosis, and treatment -- compared to these others we have it easy.

As for being a "walking info booth" -- don't worry about that! We're there with our own experience. Our legitimacy to spread the word to fellow bc patients doesn't come from the breadth of our knowledge, but from our reality. It's powerful, and the denial gives way to it. At last year's Komen 3-day (when they again wouldn't let me have an info booth), I stood along the route and handed out alert bracelets, the LymphNotes page of risk reductions, and a typed list of on-line resources. One woman marched by and waved me off cheerily with, "Not me! I only had one node removed!"

I shouted back, just as cheerily, "Me too!" I was wearing garments on both arms, and it took half a block for that to sink in.

She stopped, walked all the way back to me and said, "What did you say?"

I held out both arms and said, "I only had one node removed too."

She said, "Gimme that!", grabbed the materials out of my hand and stalked off. She wasn't going to hear that from anybody else, but coming from me with my garments, she could hear it. Hopefully it will save her grief down the road.

Tina, we are the message, as well as the messengers.

Onward!
Binney

I get really tired of being the pariah of breast cancer.  And the attitude that I must have done something to cause it;  I'm overweight (I'm not, actually, but I hear that alot), I must have done too much, or too little, or didn't understand the risk, or blah blah blah.

I didn't do anything to get this crap other than go through a mastectomy which I did not volunteer for.  The whole thing just ticks me off.  And don't even get me started on fuzzy, sexy pink crap.  It makes me want to stick a pen in someone's eyeball.

Thanks for putting it in perspective, Binney. I can do that!!