Monday, March 5, 2012

Cancer babes in New Orleans

Kathy, myself and Deb (not exactly young women!)

I travelled to New Orleans a week ago (post Mardi Gras) to exhibit at the C4YW (Conference for Young Women Affected by Breast Cancer), as a representative for MBCN. Metastatic Breast Cancer Network has always attended this conference as part of our mission to reach out to all those with metastatic breast cancer. But, I was a newbie, a little wary of being drowned in Pinkness, since the conference is meant for young women at all stages of breast cancer. I was pleasantly surprised.

Yes, there was more than enough pink hoopla and celebration. The guy with the pink cowboy hat, sporting a pink bra, (known as the Second Base Man--get it?) was parading around, but mercifully we avoided him. And there were more than a few people advocating to save the boobies, move beyond boobs, keep a breast, etc, etc. And I’m sure many of the survivors don’t realize that 20-30% of them will be joining our not-so-popular club.

But, to get to the good part:  a few workshops were offered for metastatic patients and at our booth we met the most wonderful young women! We had time to hear their stories and struggles, to offer advice, to share resources and information. I feel bad enough to have been diagnosed Stage IV at age 58 (the median age), but it’s sobering to meet young women with metastatic disease who say:

“I was 29 when diagnosed.”

“I was pregnant when diagnosed.”

“I have two kids, ages 3 and 1.”

These women are concerned, worried, overwhelmed, but also vibrant, determined and strong.

It renewed my spirit to meet them and increased my commitment to MBCN and to advocating for more research and more answers to what causes metastases and how we stop it; to raising awareness that breast cancer is not a pretty pink cheerleading event and early detection is not the cure; and to helping all those newly diagnosed with mbc to have the information they need to make the best treatment and lifestyle choices and be their own best advocate.

To my shock, even the pink cowboy, who is a strong Komen supporter and disciple of the positive pink, early detection-mammogram message,  tweeted this on Saturday: “Because my cancer is metastatic, don’t treat me like I’m a dead man walking.”  Hey, sounds like he understands our side of the breast cancer story. Is the pink haze clearing a bit? Is the message about metastatic disease slowly getting out there?

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