Friday, May 20, 2016

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.


Monday, February 1, 2016

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.


Friday, January 15, 2016

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?