Surrounded

It amazes me there are people on this planet who don’t think about breast cancer every waking moment, or at the very least, once a day.  It’s inconceivable to me that such a life exists.  I seem to be surrounded by it constantly. Even if I wanted to, there’s no getting away from it.
So, it came as no surprise to see The Huffington Post piece by Fran Visco, President of the National Breast Cancer Coalition, state breast cancer kills someone in this country every 14 minutes.  I personally know each and every one of them.
Well, it feels like that sometimes.
I often like to think I’ve had my share; mother, aunt, sister-in-law’s mom, the young wife of a good friend — all gone. All died after their cancer metastasized.  How many people do I need to know before it leaves my life for good? No answer as it reaches out to bloggers and just the other day, an old high school friend of the same sister-in-law, succumbs at the ripe old age of 46.
I’m 47.  My mother was 49 when first diagnosed.  I feel like I’m walking among land mines and it’s harder and harder to step safely, because in spite of my early detection, I don’t believe I’m cured.  I fear I’ll be walking around one day, only to have my whole life blow up in my face.  Where’s the good in early detection when nearly 25% of early stage breast cancer metastasize and can’t be cured?  Does awareness matter if the outcome is the same?

See the girl in the puffy blue jacket, 4th from the right?  That’s me.  See the red haired girl next to me?  That’s Dina. We’re about sixteen.  When Dina was 34 years old her physician was sure the lump in her breast was a cyst.  It couldn’t possibly be breast cancer.  She was too young and Dina believed that.  Why wouldn’t she?  In 1998, breast cancer awareness wasn’t the groundswell it is today and every product on the market had yet to turn pink.

When her lump was still there 10 months later, the same physician told Dina to alert her gynecologist during her annual exam.  Which she did…two months later.

One year after initially telling her physician about a lump in her breast, Dina was diagnosed with Stage IV breast cancer. The cancer had metastasized to her lungs, liver and bones.  She didn’t stand a chance.

The girl next to me in that photo, holding my hand, died of Metastatic breast cancer.  We had no way of knowing our fate on that day.  I’d learn all about breast cancer, up close and personal, three years later when my mother found her lump, but Dina wouldn’t learn for nearly twenty years when her own lump was finally biopsied.

Too late.

Ironic, really.  Two lives, starting on the same path, only to split off in very different directions.  At 19 years old, breast cancer became a huge part of my life and I’ve lived my years thinking about it, watching it’s effect on loved ones, almost waiting for it to touch me.  I knew its power because I had witnessed it first hand, several times over, but Dina didn’t.

Would the outcome differ if Dina had known more?  Who can say?  Sometimes knowing…isn’t enough.  Many times, in fact, as Stage I inexplicably morphs into Stage IV.  Awareness may have helped Dina for a short time, but it wouldn’t save her from Metastatic breast cancer and MBC isn’t curable.

It is my hope Metastatic Breast Cancer becomes a household term the way “Awareness” has.  Maybe if MBC can find a foothold in the minds of those that can do something.  Anything…talk about it, blog about it, raise funds for research on par with education and awareness campaigns…

Then maybe we won’t need a Stage IV, or any Stages.  Maybe people will stop dying every 14 minutes and maybe future generations can grow up wondering what all the fuss was about.

A Little Rant

When the New York Rangers won the Stanley Cup for the first time in over 50 years in 1994, some friends and I thought it would be fun to attend the celebration parade in lower Manhattan.

Turns out, I never saw the parade, just the sea of people surrounding me and as we started the slow trek back uptown the crowd separated me from my friends.  I stopped in the midst of hundreds of moving people to look around. You can say I stopped going with the flow.

Big mistake.

The rushing crowd pushed me against a brick building where I couldn’t move in any direction.  The tight pack of excited Ranger fans seem unbreakable.  I was pressed harder and harder into the wall and images of people trampled at rock concerts flashed before me.

There’s great strength in many moving as one.

With all I had, I managed to inch my way into the crowd and once we hit the corner, people splintered off and I was free of the masses.  Finally, in an open space I took a second and looked around wondering what that was all about. It felt like I’d been in a fight I didn’t see coming.

That’s a wordy way of describing how I felt after reading comments left for Peggy Orenstein on her LA Times op-ed piece regarding high school students wearing boobie bracelets.  It was also how I felt when blogger, Uneasy Pink was crucified sharing her opinions about this issue both on Huffington Post and the Facebook page of the organization I’d rather not name.

I’m left with a sense of disbelief.  It’s not that people can’t have differing opinions.  I don’t care about that.  It’s fine, all points of view are welcome, but what I don’t get and what ties my stomach in knots are the personal insults people are making in lieu of anything worthwhile.

It starts with the typical “lighten up,” and “you’re taking it too seriously.”  My irritation increases as I read accusations of “angry” and “bitter.”  And worsens when I see breast cancer survivors called a “prude” or even better, this clever one, “a boob.”  I can only imagine how proud the guy who thought that up must be.

Well, perhaps we are those things and yes, we may be taking it too seriously. You know why?  Breast cancer kills.  It’s incurable and it’s not pretty, or sexy or fun or littered with laughs as it destroys our bodies and steals our lives.

Why is taking a stance against dumbing down breast cancer such a negative and why does it generate such cruelty by people opposing that view?  It’s surprising to find us in the minority here.  Speaking out has us going against the flow, only to get trampled.

Are we easy targets?  We, cancer girls?

No one is saying our opinion is the only one, the right one or everyone must agree with us because we have cancer.  The goal should be a meaningful dialogue, but I can’t stop thinking the mean girls (and boys) are waiting for us in the school yard when the bell rings and no matter how we try to spin it, explain it, discuss and defend our perspective to this crowd, the hits just keep coming.

Hit us with informed criticism.  Something, anything based in reality or recognized by research, but please, please stop bullying us for our convictions.  Yes, cancer is personal and emotional, which is why we feel the way we do, but we’re not blasting anyone in a derogatory manner, calling out stinging, hurtful names.

We’re trying to explain our position.  For us it’s serious business.  The business of eradicating breast cancer, with a little respect for those that deal with it everyday and in memory of those we lost to it.  When that’s accomplished, I’m pretty sure we’ll all be able to lighten up.

In the meantime, it’s hard enough living with it.  We shouldn’t have to be insulted for it, too.