A Dog in the Sun

Like so many of you, I’ve been thinking a lot about Jody Schoger these days.  She was one of the first breast cancer bloggers I discovered back when I was consumed by it all.  Of course, I was inspired by her tireless advocacy, but it was her encouragement I embraced.  She read my words when I tentatively sent them out there and without being asked, offered constructive comments and feedback, ways to “increase my traffic.”
 
Sometimes, she’d just say “Good work. Keep it up.”  I didn’t know I was writing toward a bigger goal, but she did.  How did she know without ever meeting me that I needed to hear those things?

She wrote me when my dog, Goliath, died.  She said she cried for him, for me and wrote:  

Goliath – in his name and bearing – enriched all of us. He went beyond your family into our hearts, too.”  

And that’s how I feel about Jody.  Beyond the amazing work she did alone and with Alicia Staley and Dr. Deanna Attai to create #BCSM.  She touched me with her laser-like ability to discover what mattered most; my family, my story, my need to share.

She went beyond her family into our hearts  

In the six years I knew Jody, we never actually met.  That’s hard to even say because…I knew her…and she seemed to know me.  After reading something I wrote, she’d take time from her days to message or tweet some thought to make me smile or laugh.  

Amazing.  Who does that?   

I think, now, I took much more than I gave, but that was the role she played.  Mentor, big sister, keeping an eye on our little corner of the blogosphere.  How will it go on, I wonder?  Those thoughts were my focus when I found out she was gone.

I stood in my kitchen making dinner that day, pondering.  My family was in the next room.  My thoughts about Jody, my own, because how do I explain this feeling of loss for someone I never “really” met?  

I remembered one of the last messages she ever sent me.  I had asked her about Femara and she wrote back about some intimate side effects and some solutions. Regarding the solutions, she said to do it and enjoy my life.  It’s almost cliche, but it’s true.  That’s the very last thing she ever wrote me.  

I smiled thinking about that.  Maybe it’s not the big picture we’re supposed to focus on.  Maybe it does start with enjoying our own lives.   Maybe it has to be in order for all other things to fall into place.  Jody probably knew that.

I became aware of the view outside my window. The winter had been so long. The sun had finally found it’s way back to Connecticut and the world was green again.  I thought how Jody loved to walk with her dog in the Texas sun.  I saw my new dog at my feet and my family nearby, happily absorbed in their videos and computers.  I thought about how it was finally feeling like spring and how lucky I was to have “met” Jody.  How lucky our breast cancer community was to have her and how future patients will benefit from her work.

I’m thankful Jody’s family shared her and so sorry for their tremendous loss, but
she knew what she was talking about when 
she said Goliath went beyond my family. 

Jody went beyond hers.  

Jody, I will miss you and smile every time I see my dog in the sun.



  

Secrets and Sons

My sons were too young to understand cancer when I was diagnosed in 2009.  Just little sprouts, barely 3 and 5 years old, and since I didn’t have chemo to peg me as a cancer patient, I didn’t tell them.  There seemed no point.  I was able to spare them, really myself, the horrible task of talking about Mommy being sick.  I simply headed for surgery with a hug and a promise that what was broken inside me was about to be fixed.

Two young boys didn’t question and in a jaunty sort of way (not really), I went off to have a bilateral mastectomy.  Despite several stealthy follow up reconstructive surgeries and regularly scheduled visits to my oncologist, nearly 7 years have passed and my sons still don’t know.  


In my house, breast cancer is a big secret.

I’m not looking to debate the rights and wrongs of denying my sons this knowledge.  I figure, at some point, one way or another when I’m ready, this secret will make itself known.  I only pray it’s not because there’s a recurrence to discuss.

But, in the meantime, as many other parents probably do, I spend a great deal of time arguing with my youngest.  

He’s now 9 years old.  He’s smart, loves a bad joke, crafty in a good way, and has a gigantic, loving heart.  He’ll go out of his way to pave an easier path for someone in need.  He thinks he’s lucky.  He says he has a good life, a nice home and loves his family and I soooo, so love that about him.

As many positive things there are to love about this boy, there’s this one thing…He will argue with me at the drop of a hat.  About absolutely anything, anywhere, any time.  Doesn’t matter what I say– The sky is not blue and I can’t prove it.

I don’t know why this is, why we butt heads so fiercely every morning and every night and most moments in between.  Honestly, it’s a total drag.  Thankfully, he’s not like this in school or I’d be facing a larger problem, but he’s good there.  “He’s a pleasant addition to the classroom.”

That’s nice.  He saves it all for me.  And perhaps, that’s it.  I’m an easy target, the easiest.  I love him unconditionally and he knows that.  He understands no matter how ugly the fighting gets, how much he argues, how much he blatantly ignores what I say…It’s all fine because I’m not going anywhere.  

I’m his biggest supporter, his biggest fan.  He believes, as any 9 year old should, that I will forever stand by his side cheering him on.  Ultimately, he knows no matter what, I will aways love him…and that’s true, but I’m human and I’ve seen enough of life to grasp how fragile it is, how painfully short it is.  How at risk I am for this crap called breast cancer to reappear and take me away from him.

And then what?

Will he look back on these turmoil-filled days with regret?  Will he wish he’d been nicer to the one that loved him the most?  

I don’t know.  I hope not.  There’s no need for guilt here.  I know he loves me.  It’s not his intention to be argumentative, disrespectful, and even bratty.  It’s less about me than it is about him, growing, testing his wings.

But, I have to wonder on mornings such as this when he climbs the bus steps with barely a goodbye…what if he knew?  Would it make a difference?  Would he be more agreeable because his mother may not always be here?

Would he appreciate our time more?

Actually, I doubt it and that’s fine.  Death is a scary, difficult topic for a young boy–for anyone.  He shouldn’t have to understand or worry about it.  I want him as far from it as possible for as long as possible.  It will find him eventually.  As it finds all of us.  

None of us ever escape the loss of someone we love.  It’s just a part of life.  As are the arguments between mothers and sons, even when their secrets aren’t as big as mine.

 

Damaged Goods

My reaction surprises me.  I mean, I talk about breast cancer all the time.  I blog about it, obviously, so why can’t I say it?  

And what’s with the tears?

My husband and I are sitting in our insurance agent’s office, of all places, discussing life insurance for him, when innocently enough, the agent turns to me and asks, “What about you?”

She has no idea of the floodgate she’s unlocked.

Probably much too quickly, “I don’t think I’m eligible,” spills out.  And that’s all I say.  Suddenly, that’s all I can say.  I’m acutely aware if I say one more word, if I attempt to tell my story of the last six years…I’ll cry. Tears are surging forward, already.

Thankfully, the agent is perceptive enough to let it go and doesn’t push the issue.  She and my husband continue talking as I sink heavily into the chair, trying to disappear.  I eye the doorway planning my escape.  I just want out and all the while I’m shaken by my emotion–this sadness.  I never saw it coming.

On the verge of tears?  I’m not normally a crier.  The voice in my head asks, “What’s the problem, here?”  “What’s the big deal?”  As if I need to search for an answer.

I know the big deal.  The truth is there.

No one will ever insure me…I think.

Breast cancer, NED or not, knowing the facts as I do that 30% of all early stages will metastasize at any time…There might as well be a huge X on my shirt.  Dead girl walking.  Uninsurable and that’s a shitty truth to admit.  And I’m sad.

Thirty percent may not sound like that much, that the odds may be in my favor, but I know that’s naive.  Nearly everyone I’ve personally known with breast cancer, even the early stagers, were told it had metastasized and eventually died.  I don’t have a lot of hope. I’m encouraged by the drive and determination of the blogosphere.  I’m glad the conversation is (to steal that term) changing, but will it accomplish the herculean task of curing breast cancer or at the very least, slow its progression?  I don’t have the answer, only the fear.


And that question that started it all…still lingers in the air.

“What about you?”  She had asked.  Yeah, what about me?  That question isn’t designed for damaged goods like me.

All the progress I’d made over the years, being able to talk about it, put my voice to it, live with it…It all goes out the window.  No wonder the tears come.  I feel them still, but I won’t cry here.  I won’t.  I envision my fate and how I’ll handle it and that’s not by crying in a drab insurance agent’s office.  It takes everything not to let the tears fall.

I, actually, don’t know for sure whether I’m eligible for life insurance.  Probably, if I pay a high enough premium, but in this moment I don’t want to know.  I don’t want hear how insurance conglomerates factor in breast cancer.  How they consider it.  Is there some sort of chart with breast cancer statistics?  Some line on which I’ll land that determines my eligibility?

Thinking about it means accepting my husband will be yet one more single dad with two young sons to raise. Staying home with the boys is my job.  He goes to work everyday.  How would he manage it all?

A day doesn’t go by that I don’t imagine metastatic breast cancer finding me. Right now, I walk this sort of NED tightrope, balancing precariously over a cavernous world where, if I fall, I am no longer NED.  It seems to be a “when I fall” question, not “if I fall.”

In the instant the agent asked those words, I knew these answers.  Life insurance probably is a good idea.  My husband can hire someone, some nanny, after I tumble into that cavern, never to be seen again.  This stranger can greet my boys when they get home from school or maybe my husband can be home then.  To be the one they see at the door…When they no longer see me.

How can there not be tears?

Have you been diagnosed with Breast Cancer and have life insurance?  Was it difficult to get insured?

 

My New Alliance Revisited & Hopes for 2016

As the new year begins, I want to say thanks for the warm welcome back to the blogging world.  Re-entry has certainly been easier than the initial launch in 2010 when I didn’t know anyone and for that, I’m grateful.

Back then, I wrote an end-of-year post praising social media’s ability to bring breast cancer survivors together.  Other than using Facebook to connect with friends and family, I hadn’t delved into any other applications and had no idea what waited for me once I began sending blog posts into our cyber universe.  Recently, and maybe it’s because I started blogging again so close to New Year’s, I’ve been thinking a lot about those days, new beginnings, old friends and new ones.
  

I’m not sure why a turn of a calendar page brings old memories or new ideas or even the motivation for change.  I suppose any old day would do, but there’s something about a brand new year stretching out before me.  Fresh, uncluttered of cancer and its fallout.  Just waiting there, wide open with room for amazing possibilities.  Unpleasant things have yet to mar the clean, crisp pages of the days ahead and I so hope it stays that way.  Then I can wonder…


What’s to come?   Will I travel to a far off land?

What new adventures and challenges will the two boys I send off to school everyday, embrace? 

Will doctors’ appointments go my way? 

What will cancer researchers discover this year?

As I stand on the edge of 2016 I probably have the same hopes as most people. Hope that nothing scary finds my family and friends, just good things and if not good, well, than at least not bad. The status quo is just fine in some respects, but, as anyone told she has breast cancer knows…these are things I can’t control.

Some things I hope for are within my control…I choose how it plays out.

I hope to update Bringing Up Goliath by moving it to WordPress.  A bit of an intimidating prospect, so I’ll take all the advice I can get on that.

I hope to write more, learn more about grammar and punctuation.  Many days, I feel my writing skills are firmly planted back in 8th grade.  Forgive me for that.

I hope to advocate more.  All these years after my mother was first diagnosed in 1983 and still more than 40,000 women die of breast cancer every year, with over 230,000 diagnosed in 2015.  WTF?  Where’s the cure?  Despite the sea of pink, the message is still lost. The answers still elude us.

Here’s another big one:  Exercise!  There, I said it.

 
My goal is to sweat everyday (mostly) (sort of).  My goal is to be fit and not focus on weight, though losing 15 or 20 pounds might be nice, too.  Hey, exercise is always more fun with friends!  Who’s with me?

As I wrote, in that 2010 post, I’m thankful social media lit the way and introduced me to others that understood a breast cancer life.  Breast cancer separates us in some ways from our former lives and those that were by our side then may not understand, may not want hear it all again, or may actually no longer stand by us.  Maybe they’ll never understand how difficult it is to dream of an unbridled future when you’ve heard those words.

So, thank you for reading, sharing, standing by.  For being on my side, my alliance, then and now.
  
Here’s a link to that old post, My New Alliance, if you’d like to read it.  The words hold true.

Happy New Year!  May your blank pages fill up with wondrous things.  And don’t forget to let me know if you want in on that exercise thing…xoxo

What are the hopes you control in 2016?


Sell By…

The hard truth about blogging…
Specifically, blogging in our breast cancer community, is facing we have an expiration date.  Or rather our “sell by” date.  The date we’re forced to realize, from here on out, we’re not so fresh or at our best anymore. 

We learn we’re mortal.    

I suppose there’s lots of ways to learn that, if we look hard enough, but in this blogosphere, we get it without trying.  I don’t need to ascend Everest or jump out of a plane to grasp that life is short.  All I have to do is check Facebook and follow some Breast Cancer bloggers.

We are aware.

We know better than anyone, breast cancer lives.  We know that once it latches on, it stays for the whole ride– Whether actively riding shotgun or sitting dormant in the backseat.  We know we won’t travel solo ever again.

I’m just thankful these days, leaving it in the backseat is an option.  I can close the door and ignore it for a while.  I’m lucky that way.

The thing is– on any given day that can change.  We all aren’t lucky all the time and by following our community, that’s a lesson learned over and over.

Recently, we lost a blogger named, Carolyn Frayn.  I didn’t know Carolyn.  She started blogging after I had stopped, but last year Nancy’s Point shared a post Carolyn had written for a blog called Get Up Swinging, which caught my eye and chilled my bones.

Carolyn and I were diagnosed on the exact same day. 

May 1, 2009

It wasn’t mammogram day.  It wasn’t biopsy day.  Diagnosis…Breast Cancer.  Those words, said to us on the very same day.

In my mind, that day had been all about me.  That’s my day.  If ever there’s a day to be selfish, being told you have breast cancer is the one.  I still see myself front and center on that terrible day and now, learning someone else shared it feels like getting doused with icy water and told to wake up.  

It wasn’t just me.  Someone else had the same crappy day.
  
That fact sinks heavily in my brain and lays there, as that date does.

Of course, it’s possible.  Big world and all, but that day was never about others.  It was all mine…until it wasn’t.  

It was the day that changed everything.  The day that ultimately brought me here to blog.

That day brought Carolyn here.

Only she’s no longer here.

One day, two paths.  

So many “what ifs.”   She must have wondered.  As I still do.

And, I face my mortality once again.

May 1, 2009 must have been my Sell By date.  The day I got off the shelf, forced to deal with my new reality called breast cancer.   As it was Carolyn’s.  Without our community here, I never would have known about her.  I never would have known the date that changed my life would eventually take hers– And I am so sorry for her loss and the shattering of yet, one more family.

Maybe this is why we blog.  Amidst the most difficult of life’s moments…to learn about others like us.  To share our stories and work for change.  Maybe that’s why we do it. So, we’ll realize despite the sad stories, there are amazing women out there we never would have met.  We’re not alone.  If nothing else, blogging about breast cancer teaches us that.  

It has to be for something.

Please take a minute and check out Carolyn’s blog, Art of Breast Cancer.  She was one hell of a writer and photographer.

To Write or Not to Write

Why would a person revive an old blog?  

Many reasons, actually.  Some sad, but not in this case.  Things are good here, six and a half years after diagnosis, though I’ll save a future post for how I probably just jinxed myself.  I’m convinced that’s how it works.
Well, anyway, the idea of blogging should seem crazy.  I hadn’t wanted anything to do with it for quite a while, but the thing I can’t let go…it feels really right.  It feels strangely familiar.

There’s a brand new notebook, an array of pens, and a slew of ideas all fighting to be first in line.  First to be the words I write after my self-imposed hiatus.

There’s a head full of topics I probably shouldn’t share publicly and strong hesitation as my pen hovers over paper.  But, then it comes, fast and furious, onto the page.  Like last time.  The time when I started blogging.  When so many thoughts, questions, and unbelievable experiences all came tumbling out.  I didn’t know that day in October 2010, if I could write about it.  If I would continue.  I had no idea what waited for me, if anything, in the vast void of the internet.  I just knew I had to try because writing was my way out of the black hole cancer had dropped me in.
My only way out was to scratch, sort through and pull apart every fear, every painful twinge and all those memories.  To write, was to accept it.  To share, was my salvation.  I would learn sharing was synonymous with dropping my load.  I would find an amazingly, supportive community of others like me.  Not exactly like me, since our stories are all different, but close enough.  We’ve all known the same terrifying words.
I kept the blog going longer than I could have imagined.  Along the way, as I unburdened myself, I learned more about the disease I thought I knew.  I made friends with cyber sisters I never met in person and when I lost some, grief made me feel as if I had.    
I wrote for more than two years, until I couldn’t write anymore.  Until I didn’t want to be reminded everyday of the one thing I wished I could forget.  I wanted to spend time with my family and live my life.  
I did and I am.  
In the past, I wrote why I chose to name the blog after my dog, Goliath.  Because like him, I had a sad tale to tell, a rough road to walk and he persevered, overcame adversity and lived a good, peaceful life.  Why couldn’t I?
Two years passed after Goliath died before my family and I felt ready to bring another German Shepherd into our lives.  Another handsome male, with beautiful, amber eyes.  We named him Krypto, after Superman’s boyhood dog.  The Hound of Steel.  Unlike Goliath, he never experienced the ugly side of life.  He’s only known the good.
Krypto, our Hound of Steel

Maybe it’s okay to restart my blog that way.  With good in mind, very little drama.  Like Krypto, a clean slate.  Excited just knowing there are places to go, sights to see, ideas to pursue.  Maybe it doesn’t always need to be bad or scary or sad, though it’s fine to write those things, too.


Very often, in the past couple of years, I’d come across something I felt compelled to write about and thought…if only I was blogging.  

So, I guess it’s time.  I’m not exactly sure yet the path this renewed blog will follow, but I’m thankful for anyone that wants to come along.  I’ve missed you.


If you’re a blogger, does your ability to write ever change with your mood or situation?  Would you give it up?



Reflections on My 49th Birthday

I know.  I haven’t written in ages.  Reading and writing blog posts have been difficult the last few months and not for any reason other than I’m just busy.  Amazing actually, to find myself sucked back into the everyday-ness of ordinary life after being so rudely pulled from it four years ago.

So… what to do with my blog?  Do I write a goodbye post?  Do I let my blog flail in the wind?  How can I be a fearless friend if I can’t bear to read the words of others anymore?  What if… When if… I need you again?

What to do?  What to do?

While pondering my next step, I had a birthday.  Today actually, right now, I’m 49 years old.  I was diagnosed with Invasive Ductal Carcinoma 5 days before my 45th birthday, so I’m often quite reflective at birthday time.

However, this one is different.  I am fortunate to be living with NED, to my knowledge on this day, but the thing is, my mother was 49 years old when she was diagnosed with breast cancer.  I don’t know enough of her facts to say it was that cancer that eventually killed her or whether it was some other primary that surfaced, but let’s say it was.

I keep comparing myself to her.  I was just turning 45, she was 49… I’m now 49.  How did she feel at 49 to know she had breast cancer and the tortuous road of surgery and treatment ahead?  She still had it all to face, at 49 and years later she died.

I need to stop comparing myself to her.  I am not her.  My disease is not hers.  A very wise friend of mine once told me, we can listen to each other, support each other, but we cannot take on their illness.  It is not ours to take.  We cannot listen to their symptoms and believe we are the same.  We are not.

I’ve been having great trouble remembering those words when reading the writings of bloggers still in the midst of their cancer life.  It saddens me and I find I can’t help them or myself.

On this birthday, or any of these blessed days I want to live in the moment, enjoy my children, my husband and the adventures a healthy life brings.  I don’t want to live in a cancer world anymore and if cancer isn’t forcing me to, then I need to leave it… While I can.

So for now at least, I’m saying goodbye and thank you for being there for me.  Your comments, support, encouragement and advice have been invaluable.  I would not have made it through without you.  I hope to return the favor one day, but right now, I need to go.

Please know I remember all the kind, gentle words you gave when my beautiful boy, Goliath, died.  For even a death of a beloved pet was made bearable by the support and love given so freely by you all.

I’ll never forget it.

xoxo

Stacey

My inspiration 

The Ties that Bind Us

It didn’t matter where I was.  A room full of women at a support group.  Sitting next to a “young-ish” woman in my oncologist’s office.  Alone in front of my laptop.

We’d find each other.

They were there, these women like me who heard they had it — that word.  That word I hate giving breath to, life to.  I won’t.

Years ago I was afraid to say it, but for different reasons.  When my mom was diagnosed in 1983 I’m sure I never told a soul.

Who could say those words?  No one spoke of it then.  She carried it alone.  How hard that must have been.

Even after she died, I wouldn’t say it just so I could pretend it wasn’t still out there somewhere searching for others.  Or me.

When it found me in 2009 I thought I had to bear it alone as my mother did.  That’s what I knew and that’s what I did.  Lugging it with me wherever I went, whatever I did until I couldn’t hold it anymore.  I finally spoke its name hoping to ease its grip.

In a support group I had somehow gathered the nerve to attend I met women openly describing their experiences, dealing with it, even laughing about it.  Death hadn’t come to this door cloaked in cancer.  At least not yet.  Not on that day.  We all knew too well that it could and when it showed up, it wouldn’t differentiate between us.

It wasn’t easy at first, to say the words out loud.  Voice what had happened to me, to my mom all those years ago, but these women listened.  They got it and I inhaled their support like a drug.  I wanted more.  On various levels each and every one in that room related to my story and it was intoxicating to be around women who knew what I was talking about.

Months later I started this blog.  Something I never thought this shy girl would do, but I had to let out my experience, find others like me.  I knew they had to be somewhere and I craved their words.  I sought connection by saying, “I know how you feel” or found vindication through their comments expressing the same.

What I unknowingly stumbled upon changed how I saw cancer forever.  We were wrong, my mother and me. We were far from the only ones and no one had to take cancer on alone, but perhaps it’s the initial self-imposed isolation that drives so many women to seek answers on the Internet, to search a vast void for some personal understanding that’s sometimes so hard to find in people closest to us.

We just had to learn where to go.  Staggering numbers of women with breast cancer — All ages, all stages, all types, all treatments, all different, but all tethered together by those words.

It’s more than 2 years since I started Bringing Up Goliath and though I’ve never stopped reading other bloggers, I faltered writing my own posts.  For a long time I wrote about life with cancer front and center and as it began to take a back seat, I questioned every post, every topic.  Were my words less important now that my day to day no longer revolved around active cancer crap?  Now that reconstruction was finished?  What did I have to say?  So many have it so much worse.  The blogosphere should be theirs.

I stopped writing, not because I wanted to, but because I was unsure how to proceed.

Yesterday, seeing Fearless Friends rush to support a blogger who had received the worst news and then later joining the amazing #BCSM tweetchat in memory of friends lost to Metastatic Breast Cancer, I remembered why I was here in the first place.  I remembered how I wished my mom had known this community.

Maybe posts don’t have to be about cancer all the time, maybe it’s enough saying I’m here. This is what I’m dealing with, how about you?  Maybe something I said will spark recognition in someone and they’ll get what I’m saying despite the differences in our disease.  Maybe they can lighten their own load.

We’re the same.  We’ve been forever linked by those words.  Not a whole lot of people can say that, (lucky for them) so it’s a good thing we’ve found each other and I guess I don’t ever want to give that up.

Tweet

Thanksgiving Past

When I was a very young girl, my mother let me skip the last day of school before Thanksgiving. How I loved those days.  A break from the ordinary, the air thick with anticipation for the fun, food and family that was to come.  
Every Thanksgiving, my family and my aunt’s family would alternate houses.  It was a fact, a given we relied on without question.  Thanksgiving would be either here or there.  No where else.  I can still see my mother in our kitchen, white phone in hand, coiled wire stretching to wherever she was, planning menus with her sister, gossiping about in-laws.

It was great having a big crowd at our house, but so difficult waiting for their arrival.  When would they get here?  The slowest morning ever!

If we were the guests, we’d get in our car bright and early for the long two hour drive to my cousins’ house out among the New Jersey cornfields.  Some years we’d detour through the Bronx (NYC) to pick up my grandparents and after four hours and a couple of bouts of car sickness, we’d arrive to a house full of cousins, games in the basement, platters of food, a warm kitchen and our moms — Two sisters, together again, chatting non-stop.  We’d stay very late, fall asleep in the car and talk about doing it all over again next year.

Over the years, the usual crowd scattered about.  My brothers often went to their wives’ families. My aunt had died swiftly and horribly from breast cancer.  My mother had dealt with her own diagnosis, but persevered, flourished for a long time and a happy Thanksgiving could still be found in our house.  I would leave my Manhattan apartment for the comforts of home, a long weekend with nothing to do, but eat, sleep and hang with family until it was time to go back to my insular world in the city.

One year my mother was too sick from her breast cancer recurrence to host Thanksgiving and didn’t feel up to going anywhere.  My brothers were off with their growing families and I had been invited to spend the weekend with my boyfriend’s (husband to be) family.  I wanted to go, but felt the pull of my parents alone on Thanksgiving.  I remember my father asking what I would do.  He said we’d have Thanksgiving.

The lure of a familiar Thanksgiving was too great.  Visions of it blotted out reality and when I arrived Wednesday night I was annoyed to find a dark, quiet house.  No bustle, no music, no warm smells wafting from a bright kitchen.  Not even a cold turkey taking up space in the refrigerator.

Zero signs of a happy life.  Just screeching evidence of one ending in a bed down the hall.

I’m not proud of my next moments.  Instead of understanding, pitching in, cooking, helping any way I could, I took the role of petulant child and gave my father grief for ruining my holiday.  I could have been somewhere with people celebrating, laughing…not dying.

There was no Thanksgiving here.

The words I said to my father still sting in my memory.

“Now, I’m stuck here for the whole weekend.”

I remember his justified anger, his voice breaking, “Thanksgiving, it’s her last one.”

I knew that…somewhere inside, but maybe by wrapping myself in memories of Thanksgiving past I could ignore the devastating situation that was playing out right in front of me.  Pretend it wasn’t truly happening and the unthinkable wouldn’t, couldn’t be real.  But, of course, it was and even the strength of denial couldn’t stop it.

Less than 4 months later she was gone.

I want to say I’m sorry.  Sorry for being so bratty.  Sorry for acting as if my good time was more important than my mother or my father, who took such amazing care of her.  Sorry for the words left unsaid on that day, on many days…

Happiness is not a divine right and sometimes life craps all over it, but it’s ingrained in me to be thankful for my childhood, for the love two sisters had for their families.  Thankful for the joyous anticipation I still feel and am trying to instill in my own children as Thanksgiving approaches.  As my mother did for me.

I’m thankful for my family and friends, near and far.  I’m thankful for NED and most certainly for the house full of people I’m lucky enough to surround myself with on this special day.

One, so very different, so very far from that dark, quiet house 12 years ago when there was no joy. I wish I could let it fade away, wipe it from my brain and focus on the many other days that bring me to still love this holiday.  Love it as my mother did.

I’m working on it.

And to all of you who read my words,

I am so thankful for you and your unwavering support and encouragement.  I wish you your best Thanksgiving yet.

xoxo

HOW and Why

Hello Blogosphere, it’s been a while…

I was away doing what people do, whether they’ve been diagnosed with breast cancer or they haven’t.  The things people do before breast cancer brings it all to a screeching halt.  I was taking care of my family, working a little, traveling a little and all the time pretending it was the old days when I could live this sort of life.  One of summer days and small boys, beaches and car rides. When drippy ice cream cones were my biggest problem of the day.

Remember days like that?

I spent my summer stepping back from cancer, from this blog.  No appointments to dread, just summer followed by the usual back to school bustle.  I have to admit, it was nice.  I was burnt out from writing about cancer.  From reading of online friends dealing with recurrence, the never ending pink fight.  It’s all very draining, and though I thought of expressing it here, I couldn’t.

In the two years since this blog’s inception, I’ve had no problem sharing my angst and it was often met with great compassion, understanding and encouragement from our online community, but these days complaining doesn’t feel right.  At this very moment in time all is fine with me and I can’t complain knowing that.

If I’ve learned anything from writing here and meeting other women with cancer is there are thousands living these days with metastatic breast cancer and they deserve their place in our blogosphere.  They need to be heard, their stories shared and made to feel they matter because after all, metastatic breast cancer is what kills and it can hit anyone, anytime and I don’t ever, ever go a day without remembering that.

So, though I lived a normal summer, acting as if all was right in my world, I felt like an impostor in my own life.

A wife and mother living as if the dormant monster chained in the closet couldn’t possibly break free, but it was a lie.  I still looked over my shoulder, wondering, waiting, remembering it touched me once and by its very nature wants to again.

Even with no evidence of disease I can’t let it go, because breast cancer doesn’t let us go.

No one knows how or why it returns or really why it even starts.  Research is the answer. More research is needed to understand, prevent or cure metastatic breast cancer and only through more research can the initial causes of this hideous, relentless disease be determined.

“We need to go beyond a cure. We need to stop people from ever getting breast cancer in the first place.”
— DR. SUSAN LOVE

Today, October 1, The Dr. Susan Love Research Foundation is launching HOW, the Health of Women Study.  A worldwide, long-term online study open to women and men 18 years and older with or without breast cancer.  By compiling and studying answers to questions about one’s health, family, job, and other topics, researchers will gain a better understanding of breast cancer and its possible causes.

By registering online at HOW you can help put awareness into action.  There is no cost or permanent obligation.  Once registered, you’ll receive periodic questionnaires that you can fill out at your convenience.  If you’d rather not participate at any point, you can opt out of further communication.  There’s no down side.  Your privacy is protected and your answers may contribute to the future prevention of breast cancer.

For the most part, breast cancer takes us by the hand and leads us down a path of its own choosing.  We stare it down with treatment and surgery hoping for many more years, but by participating in HOW, we’re doing something more than waiting.

We’re actively helping researchers figure out a way to stop breast cancer once and for all.

So no one need look over their shoulder ever again.

I hope you’ll join me in HOW, Health of Women Study.