Off the Mat

The road stretched out as we drove, first east, then north, with nothing but some duffel bags too small to carry our troubles of the last couple of years.

Beyond my windshield possibilities come into view.  Beaches calling for explorers, clams to be eaten, fun to be had, but buzzing most in my mind was not the joy ahead, but the crap left behind.

Thanks, Breast Cancer.

But I wonder, if I can’t see it or hear it or deal with it, if my responsibilities end and appointments no longer clutter my calendar, can I forget it?

Can I be someone who pushes aside the faces and words of women who died and ignore the glaring realization, the knowledge it can be me?

If it seems there’s a smidgen of chance to wipe my slate clean, it’s not for long.  I know there’s no escape.  My past travels with me.  Cancer rides along daring me to shake it off, leave it in the dust somehow and for a while I manage to do that, but as the days pass and miles to home trickle down, reality seeps thickly, slowly back through my pores reminding me my burdens are exactly where I left them.

Once home I wonder why it’s easier to focus on the bad, when the good matters as much or more.  It sometimes seems my feet root in a pile of unpleasant memories and whither rather than seek fresh ground to thrive.

Such a waste of time and I don’t want to waste any more.

Maybe if I change my thinking, approach things differently.  Since I can’t outrun my own history, perhaps I can use it to my advantage.

Renewed and encouraged by this rare positive attitude I venture off to my second ever Pilates class (because, you know, it’s good for me) only to have my mood squashed.

Pilates is hard for one out of shape and stiff from surgeries.  Moves prove difficult, limbs refuse to stretch, muscles shake with each position and then…The Plank.  Arms out, flat on my mat, lying heavily, painfully on my implants with zero strength to lift up.  It shouldn’t be this hard, but like so much for those of us diagnosed, it is.  Cancer’s roadblocks, again popping up when least expected, even here.  It’s overwhelming.  I put my forehead to the floor and nearly cry.

Staying close to the mat for a second, I mourn my lost flexibility. I’m angry I can’t lie on my stomach, disappointed by my weakness and pissed at breast cancer.  I wonder if anyone else here carries these thoughts, this story.  It can’t only be me, but at this moment it seems so.

Somehow I had to push up…I managed, not gracefully, not smoothly and definitely out of form, but I got up and finished what I had started determined to get better.

Right after struggling through Pilates, I catch a television commercial overrun with happy, smiling people, some bald, some wearing scarves, surrounded by flowing pink banners excited for a breast cancer walk.

Why are these women so happy?  Has a cure been found I don’t know about?

This really bothers me.  Those faces seem so clueless…don’t they get it?  Breast cancer is not something to smile about.  If only the other side were portrayed in these commercials for the cure.  People speaking eloquently, passionately of those lost to breast cancer, describing their own disease and proclaiming awareness and early detection are not enough. Actual angry, fed up citizens demanding their donations go directly to research so pink walks are never needed again.

That’s a commercial I’d like to see.

Maybe I’d be happier if I didn’t know better.  If I still believed in the power of hope as those in the commercial, but hope without research leaves us nowhere and nowhere, like being stuck on my mat, sucks.

We need to gather all our strength, our collective voices and push.  Maybe together, we’ll get somewhere.  Maybe hope will spin into action.  I have to believe that.

I’m starting today with Breast Cancer Action’s “Think Before You Pink” webinar and seriously considering attending the National Breast Cancer Coalition summit in Washington, DC this coming May to learn how I can help change the conversation.

It’s a start.

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?

Rachel’s Words

I published my very first post on October 20, 2010.  My husband knew and no one else on the planet.

Less than two weeks later my first comment from Rachel Cheetham Moro arrived.  She was drawn to a contrived word, Clogger = Breast Cancer Blogger.

I saw Rachel’s comments as a stamp of approval.  As encouragement to keep blogging. My words and experiences worth sharing.  That it was even important to do so.  She reminded me women the world over needed to hear from those that had been through it. We would help each other.  

The word, Clogger, would fall by the wayside, but my ties to Rachel never would until the reality of breast cancer severed our strings.

Here are just some of the many, insightful, passionate words I was lucky enough to receive from Rachel.

November 2, 2010
What I have discovered in the clogging (LMAO about that term!!!) world is that cloggers read other cloggers, and what an amazingly supportive, wonderful world it is.”

December 23, 2010
“You know I’ve been thinking a lot about this social media thing and I think we’re barely scratching the surface.  I have thought of trying to put together a breast cancer blogger summit of sort.  Need to think a bit more about it and of course, the technology, but I say, why the hell not?”

March 10, 2011
“Your Sherpas are with you today and every day.”

Publishing new blog posts will never be the same, for I know I will never again find her funny, snarky, intelligent, caring comments in my mailbox.

Thank you, Rachel, for welcoming me into this “amazingly supportive, wonderful world.” 

Thank you for opening my eyes to the inequalites in breast cancer fundraising and telling us all what life is and can be for someone with Stage IV breast cancer.

We will never forget there is more work to be done.

We’ll take the reins from you now.

As you said and what you must know, “Your Sherpas are with you today and every day.”

For My Blogging Sisters

I need more time, I think.  To do justice to what Susan Neiber and Rachel Cheetham Moro meant to me as a person with breast cancer, as a blogger, as a friend.
They need more time, they probably thought.  To inform others that breast cancer is not over despite how pretty it looks dressed in pink.
People still get diagnosed.  People still die.  People still get left behind.
My thoughts today are with Rachel’s Beloved, Anthony and her devoted companion, Newman.
My thoughts are with Susan’s husband and the two young boys she so often described as her source of strength and her greatest joy.
If I could dim the lights on my blog, I would.  This is the only way I know how.

Then and Now

Early Sunday, March 12, 2000  2:40am
My mother died tonight.  I was sitting by her side.  I watched her take her last breath.  I hope she was somewhere else by then.  I told her I loved her.  She knew.  She suffered so much. Such a hateful, horrible disease, humiliating and degrading.  I don’t want to mention specifics.  I want to remember the mom that raised me.
I will miss you.

Thursday, March — something or other  11:15am
The days have melded together.  It seems like weeks since Saturday.  Monday…Funeral day is a blur.  People in and out of the house everyday.
My grandmother is holding up.  I think she’s angry now.  Angry over losing two daughters to this.  She sat my cousin and myself down yesterday and gave us a speech. I love seeing her so strong.  I hope we have her genes.
Don’t let it be for nothing.
As for me, I was afraid of feeling torn up inside, shredded, unable to function, but that’s not the case.  I feel okay.  I truly believe my mother is in a better place.  I also feel her with me.  I wonder when I’ll be hit with overwhelming sadness.  What if it doesn’t come? Does that make me bad?  
I miss her already, but I feel like she’s here.

Wednesday, April 12, 2000  7:15pm
I’m tired, weary.  I feel it in my bones.  I want to call my mother.  I never in my life went a month without speaking to her.  Calling her…
I don’t have a mother anymore.  Where did she go?  I feel that her spirit is alive someplace, but I can’t find her.

The above are diary entries as I wrote them, word for word, in the days following my mother’s death from breast cancer nearly twelve years ago.

— Eleven years after her younger sister died of breast cancer.

— Five years before my brother’s mother-in-law died of breast cancer.

— Nine years before my own diagnosis of breast cancer.

Today, February 4, 2012 is World Cancer Day, but one day is not enough.

After all these years of breast cancer awareness, one thing remains the same.  Women are still dying in numbers comparable to twenty years ago.  Not simply nameless, faceless women represented on a chart or some metric hanging in a pinked out office, but mothers, daughters, sisters and wives whose absence rips wide, gaping holes in the lives of those that love them.

Breast cancer is not pink.  It is not a happy, smiling face and it is not over.

I wrote long ago…Don’t let it be for nothing.  I can’t believe after all these years, I’m still writing it.

Some organizations worthy of your dollars:

Army of Women
National Breast Cancer Coalition
Support Connection