Wednesday, May 18, 2011

In Too Deep

Normally around now, a week or so since my last post, I'd be in a panic.  But, this time seems different.  I'm not getting that sense of urgency.  Laying low feels kind of right.

Without meaning to, but simply since I can't help it, I've been giving breast cancer a lot of thought lately.  It seems I didn't know that much when I first began blogging.  I didn't know squat.

My goal was to share similar experiences with other bloggers.  I had no way of knowing I'd learn from them.  I couldn't have predicted an online community would infiltrate my daily life and I had no idea how much it would matter.

Before cancer I thought I knew the differences between stages 1 - 4.  Although, I couldn't tell you the parameters of each.

I had never heard of Triple Negative, Estrogen Positive, Her2 neu or Inflammatory breast cancers.

I didn't understand what hormone inhibitors were or why it was an option for some breast cancers, but not others.

I thought all breast cancer required chemotherapy.

Oncotype DX???

I thought all fundraising organizations worked toward a cure.

I thought little about metastatic breast cancer until I learned its research is shamefully underfunded.

I didn't know that 110 women die everyday from breast cancer, approximately a whopping 7 less than twenty years ago...  Many of these women, initially diagnosed as Stage 1.

Even after all that pink.

I didn't know three bloggers I admire would die within a very short time of each other.

Maybe, if I wasn't so invested in this topic... If I didn't follow the bloggers everyday...

I could learn of their deaths, one after another, without taking hits to my very core.  Breaking it, bit by bit.

Women like me, around my age.  Wives, mothers, sisters, daughters.  Women, at one point or another who thought they had it beat.

If I wasn't in so deep...

Then maybe I'd believe those who tell me I'm lucky.  Believe in the words, "early and small."  Instead of silently nodding, knowing-- It may not matter.

I know now breast cancer isn't about early or small.  Its life may be dependent on things we can't cut out, poison or radiate away.

If I back off... scary facts may not find me so often.  My days might be idyllic ones raising two young boys, bursting with sunny moments, finding great pleasure in the small things and wide open dreams of a happily ever after.  An innocent vision of life, as children might see it, before they know better.

It's been a lot to learn and overwhelming at times. Would it matter...If I stepped away from cyberspace for a while?  Would things be easier if I weren't so engrossed in it?

Breast cancer would still exist.  And women would still die.  Only I'd know less of it.  My days and mood would be lighter, unburdened by cancer's black cloud.

Would I care less?  No.  I know it's out there, lurking, but I also know the women in my online community are there, dedicated to seeing its eradication, while providing unwavering support for one another.

Perhaps that's why my self-imposed computer exile felt right, even necessary to fully embrace a couple of special birthdays, an adoption day anniversary, some tee-ball, a class trip to the library and some all around quality time.

Time away from breast cancer to busy myself with happier aspects of life.  The same stuff those three bloggers found so important.  The very things that inspire and drive me to dive back in, learn what else I can do to help rid our lives of this insidious disease and no longer have a need for this community.

Unless, of course, we just want to tell stories and share some pie.


The three lovely bloggers I mention are Sarah of Spruce HillSarah, The Carcinista and Daria, Living with Cancer.


Monday, May 9, 2011

Mother's Day Thoughts

I'm not sure how I feel about Mother's Day.

Although, I'm the mother of two young boys, I don't feel the day is about me or the love and devotion I bestow on them.  Perhaps my boys are too young now. Hopefully, when they're grown they'll use the day to happily acknowledge my existence and maybe I'll be able to appreciate it then.  It would make sense, because Mother's Day has me remembering my mom.  I see it as her day, not mine.

But, she's gone and the day forces me to face what I've lost, not what I've found over the years.

It still feels physically "off," not having a mother.  Even after eleven years a piece of me remains missing, but it's not only physical.  An emotional connection to my past has been severed.  An older generation shares a history, a way of life my children will never experience or learn about first hand through stories, celebrations, food, and my grandparents' favorite, card games.

My boys have lost too, only they don't know it yet.

I was reminded of this recently when I came across a blue sweater and matching hat my Great Aunt Shirley, knitted for my oldest son months after his arrival from Russia nearly seven years ago.

My grandmother and her sister were quite the knitters. Growing up I remember an unspoken competition between them.  Who was the better knitter?  They were funny the way they'd check out each other's work, closely examining stitches, comparing buttons. Reluctantly complimenting the other.

"Oh, nice popcorn stitch.  If you want to go that way."

Shirley, flanked by
Mom, left and her sister Fran, both
taken by breast cancer

As a Depression era child, post war teen, my mother knew how to knit, but didn't care to. Taught under less than ideal circumstances, she found zero joy in it, but that one older generation saw it as necessity.  A way to dress warmly without spending a great deal of money.  The perfect gift for a newborn.

For a daughter's baby...

Over the years I watched as my brothers and their wives unwrapped newly knit sweaters for their babies.  Reveling in the handmade gift, not just for the love and effort invested there, but for the promise of a future time when the grown child sees it as a link to their past, the history of their women all wrapped up in pink and blue.

My mother and grandmother were long gone by 2004, when I first became a mother.

Who would knit for me?

My Great Aunt Shirley, months from the end of her life, gave me that gift.  And it meant the world to me.  As I resurrected that sweater from the drawer it was living in since my babies have grown, I knew I couldn't close the drawer on it again -- Or what it came to represent.

As luck would have it, Great Aunt Shirley's great-granddaughter had just been born and though it was blue, I couldn't think of a better gift...and passed it on.

Wrapping it carefully, I remembered the women in my life who knit, who are gone. Knowing there's no one left of that generation who can create such a gift. Giving the sweater away felt a bit like breaking the tie that binds me to them.

And I was sad for that.  Sad and a bit selfish that I no longer have those women in my life.  Those that saw me, not as a mother, but as a daughter.

I'm not sure why it seems to matter more on Mother's Day than any other day. The loss is always the same, but most days I'm too busy being a mother to consider that I might need one.

On this day, a day set aside to honor those that love us, I remember those I loved, the gifts they gave, the legacy they left behind and can only hope my children will someday understand and reap the rewards of such a history.


Friday, May 6, 2011

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.