Stepping Out

Rachel was an “all in” kind of person.

If I didn’t know that before I learned it Saturday when I had the privilege of hearing her friends and family, many of whom had come from as far as Australia and England, speak about her friendship, her wit, her joy for life. Her unbreakable commitment and passion for anyone and anything she cared about.

Rachel Cheetham Moro

If Rachel liked something about you, she was your friend for life.  She didn’t do anything halfway, or half-assed like her dedication to exposing breast cancer’s ugly truth or the horrendous fact that little has changed since the inception of pink awareness…Where does that leave us? How do we make a difference now?  Can we accomplish anything if we’re not all in, like Rachel?

Feeling like a woman on a mission, I was fortunate to speak with Kathi Kolb, The Accidental Amazon and Sarah Horton, Being Sarah about my idealized, all-consuming quest to end breast cancer and both ladies wisely pointed out, it’s nearly impossible to always be all in.

Rachel was an amazing exception.  Activism is tough, draining work. It’s exhausting diligently keeping one’s nose to the grindstone only to hit wall after wall with little results. That doesn’t mean it’s not worth pursuing, but sometimes, for sanity’s sake, one needs to step back, look around, assess the situation, refresh and regroup.

I think it’s time I step out for a while.  To refresh, regroup and process the losses, not just those of last week, but all the losses over the years, the nearly 30 years since my mother was first diagnosed.  When breast cancer entered my vernacular and never left.

To learn what I can do, discover my role.  Thirty years is a long time for breast cancer to linger around the edges and often the forefront of my thoughts.

It’s time to contribute in ways that matter, in this fight to cure, prevent, eradicate this scourge that takes so much.  Maybe that means approaching this blog differently.  Being a better resource for those recently diagnosed.  I’m not a scientist.  The laboratory is not my place.  So I don’t know yet, but I do know breast cancer cannot continue to steamroll everyone in its path.

I want to be all in and I’m off to discover what that means for me.

To figure out where to go from here.

While stepping out to regroup, I leave you with this:

Somewhere in the sands of the Jersey shore or hiding in the food court of the Monmouth Mall is my little son’s tooth.  His first baby tooth to fall, lost forever while I was at Rachel’s memorial service.

Time stops for no one.

Like the gray Atlantic waves Saturday, life moves on.

What are we going to do with it?

Grumbling

Thank you, Nancy Brinker.  For more than you know.

For providing the inspiration I needed to get blogging again when all I wanted to do was sit on the couch and mourn the loss of my beautiful dog.  When the thought of writing about breast cancer was beyond me.
For igniting a spark among my tired, depleted emotions.
For reminding me why my blog exists.  Why quiet bloggers everywhere with something to say — matter.  We are not simply typing away in lonely, empty rooms for the sake of something to do.  Many of us were pushed into blogging by the sheer, ugly fact of having cancer or by the sad, frustration endured with the growing number of people we’ve lost to it.
In my case — both.
So, Nancy Brinker, when people who are “scared to death” as your sister was, or like you, have lost someone or are dealing with their own breast cancer, women and men whose dream it is to realize the eradication of breast cancer, have their questions equated to words of “grumblers” and their concerns tossed aside as some lint plucked from a fancy pink jacket, you inspire us to write.  For that is all we can do.  We, the Grumblers.  We can ban together as one and as my friend, Jody, says, “Roar.”


Because, here’s the thing.  No one is denying the good work Komen has done over the years.  Especially me.  I’ve personally seen the benefits of breast cancer awareness after my mother fought her disease in quiet secret and when I was diagnosed years later.  I could choose to keep my mouth closed and solider on, as she had or use my words to describe the reality of the disease; it’s various forms, it’s ability to return no matter one’s prognosis or treatment.  I was able to find empathetic support, because the disease was no longer in the shadows.
And that is a direct result of the pink movement bringing breast cancer education to the masses, making it acceptable to say it’s name, Breast Cancer, in most homes around the world, but not all, not yet.  
So, I actually agree with you when you say “There won’t be enough pink until the fight against this disease is won.”  People are still dying.  Everyday.  Nearly 40,000 people in the United States alone will die this year, and it’s not because someone didn’t wear a pink tee shirt.  It’s not because someone didn’t purchase enough pink Tic Tacs or donate to yet another fundraiser.  It may not be because someone didn’t get a mammogram early enough.
Forty thousand people will die because we don’t know how to prevent metastatic breast cancer.
Because, in simple terms, we don’t know how to prevent normal cells from becoming malignant.
Maybe, if the bulk of donated dollars were given to research, we’d be more hopeful, but that is not the case.  Not when Komen for the Cure appropriates approximately 19% to research, along with a myriad of other organizations raising money “for the cure,” but actually only raising enough to sell additional cute shirts and pink rubber bracelets adorned with catchy phrases.
What an opportunity you have, Nancy Brinker.  To stand up in front of the millions working so hard for the cause and announce Komen has fulfilled their goal of raising awareness, and while it won’t be forgotten, fewer dollars will be allocated.  Stand up and declare it’s time for Komen to refocus their efforts where it’s needed most — research, because without that, breast cancer will never be cured.
Komen has the power to fund the most promising work, the opportunity to further incredible advancements.  Komen can be on the cutting edge of the breast cancer cure.
And isn’t that really what you promised your sister so long ago?  Back, when you yourself were grumbling about the way the disease was handled.  How can you fulfill your promise to end breast cancer without prioritizing research?
Please don’t disrespect us for questioning the status quo.  In the end, we all want the same thing.  A clear path to a future without breast cancer.  One where awareness campaigns are gone for good.  


We heard you.  Do you hear us?


A Tale of Two Gatherings

Last week, some dear friends from my former career life got together for a reunion in New York City.  It’s probably ten years or more since I’ve seen some of them.  We keep in touch sporadically.  Mostly through facebook, but some news can’t be announced with a status update or brief tweet.

Sharing a breast cancer diagnosis is one of those things.  So, that bit of information never made its way to those old friends of mine.  What would be the point?  I never see them.  We no longer share the stuff of everyday.  They’re not involved in the minutiae of my life.  Is there an etiquette rule requiring all old friends must be notified upon receipt of life-altering crappy news?

Turns out the timing wasn’t right and I couldn’t attend anyway, but if I had gone, I knew I wouldn’t tell them.  I would have pretended to be the young woman they think they know.

Breast cancer doesn’t belong there.  It doesn’t belong anywhere, but especially there.  In a dingy bar filled with past memories.  Surrounded, not by people currently in their forties, but by the idea of who we used to be in our twenties and thirties.

I’d leave that reunion soon enough to re-enter my current world, but at that gathering, cancer would wait outside the door.  Lingering in the shadows for a few hours.  Non-existent for the moment.  While I would be whom I once was. Back in the days when I was more carefree…before it found me.

In a city farther south, another group of friends gathered for the National Breast Cancer Coalition Advocacy Training Conference and this group couldn’t have been more different from the first.

Here were women I’ve never met, but spend time with everyday.  Whose words and work I admire.  Whose thoughts I connect with.  They gathered in Washington to fight for something I also believe is worth fighting for.

At this event cancer walked right in.  Discussions of breast cancer were not only welcome, but encouraged.  It took center stage and was the sole reason these women came together.  They were not only happy to talk about it, but giddy, enthusiastic, and inspired by it.

It is NBCC’s goal to end breast cancer by 2020 and all conversation centered on making that a reality.

At last, an exciting mission, empowering when embraced.  For too long it seems we were stuck in a sea of pink, hearing of changes, wanting to believe advancements were being made.  Needing to believe optimistic statistics when in actuality, approximately 40,000 people still die from this disease every year.

About as many as two decades ago.

That’s not advancement.  That’s not change.  That’s a number hidden so far down in a sea of pink we barely see it, but deep within ourselves, where the scary thoughts thrive, we know it’s the truth.  Pink awareness is not enough.

The people attending this event heard the conversation shift.  They refocused on facts, and with a concrete goal in sight discussed how research, combined with action and dedication could have the 2020 eradication deadline within our grasps.

Social media was at its finest as bloggers tweeted from their workshops.  I couldn’t absorb the information fast enough and want to thank Uneasy Pink, The Cancer Culture Chronicles, The Accidental Amazon, Pink Ribbon Blues and Women with Cancer bloggers, just to name a few, for taking time to spread the inspiration around.

If I had to choose a place to be that weekend, it would have been there in Washington, beside this group of incredibly motivated women.  Dragging cancer to the center of the room for all to see.  Believing, it was now possible to kick the unwanted guest back out…never to be seen again.