Brunhilde, Where Are You When I Need You!

The problem with cancer is that the only time the Fat Lady ever sings is when your battle with it is over.  Over, as in you're dead.

Millions of cancer survivors walk the planet feeling great, living healthy, enjoying their lives -- most of the time.

Obviously, I can't speak for everyone, but there are enough "members of the club" in my own life that I think it's safe to say, it's mighty hard for those of us who have fought the good fight against the Big C not to live the rest of our lives without that niggling, nagging, nasty little thought that it someday it just might rear its ugly head once again.

Example:  Right now, the right side of my neck is bothering me.  It's probably just a strained trapezius muscle.  But it's the same side as the site of my melanoma, and my doctors are always asking if I have any unusual aches or pains, so naturally that horrible little thought occurs - even though it's for the briefest of moments - that maybe it's something I should worry about.

I'm pretty good at not dwelling on such things for more than a minute, but during a recent visit with my new medical oncologist (not to be confused with my surgical oncologist),  I was informed I should keep going with tests, etc. until I hit the five year mark (as opposed to being done at 3 years, as I expected and hoped).  As he put it, melanoma, along with lung cancer, are the two most insidious forms of the disease.  Melanoma, especially, is known for its "heartbreaking surprises."  I'm not sure it was a good idea for the doctor to say this to me, and I chalk it up to his youthful intensity.  Of course, I responded with a smile that I had absolutely no intention of being one of his "heartbreaking surprises."

Still, it gives one pause ...

All of this has led me to an epiphany about why I've been so reluctant to start a book about my experience.  I want to, I really do.  But I also want to be completely and utterly done with cancer. And somewhere in my psyche, I know that if I start to write about it, I will be reliving the whole horrible mess until the book is done.  It's a daunting thought, to say the least.

Still, I've been encouraged by so many people to tell my story.  And I do think it might help others going through a similar experience to hear how it's gone for someone who has also walked the path.

And then there is thing about me that can't be denied.  I write.  I have always written. I probably always will write.  Journals, poems, short stories, essays, articles, novels.  It's a complete love/hate relationship because it's so bloody hard to do, and often I don't even do it all that well - yet I can't seem to not do it!   I've tried to stop, but even when I think I've given it up, it comes out in odd little ways, like long Facebook entries.  There's no denying it. To anyone who knows me well, it's my identity.  I'm a writer.

I apologize, Readers, for once again displaying my angst about starting this book.  Wanting badly to do something, and hating the idea of doing it are two tough emotions to reconcile.

But there's one final truth that cannot be denied.  My life as a cancer survivor, my life without a nose - it will never be over - not until the day I die.  Every morning, every night, every time I time I look in the mirror, I am the woman without a nose.  It has become my other identity - my bigger identity even that that as a writer.  I never wanted to be Cancer Girl.  I said when this whole thing began that I was not going to let it change who I am at heart.

So maybe, just maybe - I have to write this book just to rebalance the scales.


(Postscript:  Yes, I cheated and checked Wikipedia for the name of Wagner's original Fat Lady mentioned in my title.  No, I'm not that smart and erudite - just resourceful.)

Take Me For What I Am ...

To post my noseless face or not to post, that is the question.

Paul and I spent last weekend up in Portland with bro and sis-in-law, Joe and Liz.  We spent much of the rainy weekend relaxing around the house, and our hosts were gracious enough to make me feel extraordinarily comfortable hangin' without a nose.

But herein lies the rub ... there were moments when we might have snapped photos of the four of us to commemorate our time together and share with family members and friends.   But who wants to see a cute family photo that includes someone with a big honking hole in their face? Why, it's just not done!

Well, maybe it should be.

I have often longed to share impromptu pics of me and animals around the house, but have stopped myself for that same reason.  The temporary solution was to cover the hole with my fingers, but when I see those pictures, it just looks weird and sad to have my hand in front of my face.

So, here's the deal.  No more hiding.  If you are my friend on Facebook, a follower on Twitter, a reader of this blog, then you already know my story, plain and simple.  I will do my squeamish friends the courtesy of posting a warning on Facebook.  If they want to unfriend me or "hide" me, they can.  But I will not hide me.  Not any more.  I won't go out of my way to be provocative and post just to shock people.  But if I have a glorious moment I want captured in a photo (like when both cats and the dog all climbed into my lap at the same time), and I happen not to have a nose on at that moment, well, that's okay.

After all, does it serve anyone to hide who we really are?  The world is filled with people who are disfigured in some way or another.  What's wrong with just accepting people with their flaws?  Of course, first we have to accept ourselves before we can ask others to do the same.

I often boast that if I didn't "have to" wear my prosthetic nose out in public, I wouldn't.  Yet, there are moments I get very self-conscious being around people without my nose.  But it's usually only just the first few minutes with someone who's never seen me like that before.  Then we all get used to it and it's no big deal.  Exposure Therapy is a real thing to help people get over phobias.  Isn't that what I'm proposing here?

Just imagine, all you "normal" people out there:  If it was acceptable to walk around with holes in your face, or horrible scars or whatever ... how much less anxiety would you have over a stupid zit!

I have nothing against enhancing ourselves and striving for beauty.  I wear make-up, I pay the big bucks for good highlights and haircuts.  But for the flaws we cannot change, isn't acceptance the best answer?

Is this a controversial stance?  I honestly don't know and would welcome comments/discussion on the subject right here on the blog site.

In the meantime, I offer up the apropos words sung by Mimi and Joanne in Rent, "Take me for what I am, who I was meant to be.  And if you give a damn, take me Baby ... or leave me ... "

Ways Melanoma Has Changed Me #73
  
Once upon a time I was all about the outdoors.  Staying inside on a beautiful Sunday seemed like a sin, a crime against nature.  Hike a trail, lay on the beach - it wasn't about exercise or being active.  It was simply about being outdoors.  

Because back then, BC (before cancer), being outdoors was no big deal.  You needed only to put some clothes on - sometimes not even very much - then open the door and step outside.  So easy, so simple, it's painful to remember what an entirely thoughtless process it was.

Now I am in what I call my "vampire days."  The sun that I once so loved is my enemy.  And it's not even just my enemy, it's the enemy of my prosthetic nose.  Besides the threat of melanoma recurring, I've been warned that sunlight will damage the delicate paint job on my silicone prosthetic, the very paint job the prosthedontist labored over so meticulously to match to my skin tone as closely as possible.

And somehow, not being BFF's with the sun anymore kind of takes the fun out of being outside.  I don't just need minimal clothes anymore.  Now I need to slather sunscreen on every possible piece of exposed flesh.  And I don't just have to just put it on once - no, I have to carry it with me to reapply when it's worn off.  

Oh, and then there's the hat thing.  I must always wear a hat with a large brim.  That's actually more for my prosthetic nose than for me.  You can't put sunscreen on a prosthesis.  Sure hats can be fun and I've kind of enjoyed becoming a "hat girl."  But when something is a "requirement," all the joy gets sucked right out of it.

And, oh yeah, the real kicker:  If I go out, I have to put on a nose.  It's a simple enough matter.  I just click it on and go (and I'm so lucky it's that easy).  But it's like wearing a bra on your face.  You know you need it, it's not painful, but you always feel it, you always know it's there and you can't wait to get home and take it off.

I find myself happily indoors much more than ever before.  And I don't like it. The indoors is stuffy and you are surrounded by things you should be doing - like housework or writing.  Dirty dishes and a computer are masters in the art of silent taunting. 

The outdoors used to refresh me, renew me, make my spirit soar and feel connected to the universe.  Nothing indoors can do that in quite the same way. 

So what's a girl to do?

Answer:  Get a dog.

No, I'm not kidding.  And I didn't realize until this very moment that this piece was going to be about the dog.  But I guess it just is.  

I may not be driving to the ocean or hiking trails up in the hills, but outside is outside.  Fresh air, sunshine, beautiful sky is all around us.  And even though I may not get more than a mile or so from home, walking the dog has brought me enormous pleasure.

My Aitchy, of course, is primarily responsible for Cally.  If it's cold or raining or late at night, it's his "job" to take the dog out (just as it's mine to clean the litter boxes for the cats).  But as daylight sticks around longer and longer and the days are warmer and warmer, I try to join them for at least one walk a day.

And I realized yesterday, when the three of us went beyond our usual walk to let Cally romp at the park, that she may not have an official tag or vest, but she truly is a "therapy dog."

I don't want to be a vampire.  But the reality is that being outdoors will never again be simple.  And just when I'm feeling too lazy to bother, those big brown dog eyes remind me that it will be worth the trouble.

The time has finally come for me to start sharing my story.  For almost three years, people have been telling me I have to write a book about the adventures of losing my nose to melanoma.

I have thought long and hard about starting.  And every time I do, I just don't feel ready.  The story hasn't felt finished.  (With cancer, it never is completely over.)

Over the course of my life, I've created three novels, numerous essays and articles, with a few works published.  In recent years, I have endeavored to let go of writing and considered myself a "recovering" novelist.

But the world has changed.  Enter blogging and social media, and even as I write this, I suddenly understand that the bazillion posts I've made on Facebook have meant I've kept up my writing after all - in a less than lofty forum, true.  But writing is writing, and readers are readers.

As for my cancer experience, perhaps the hardest part of my journey was that I had no one else who had been through this particular trauma.  I had great support from other cancer survivors (and of course, from family and friends), but no one else had the experience of losing their face - the thing most linked to our identity.  Knowing there are others out there somewhere who have also lost noses, eyes and ears to melanoma - not to mention all those who have lost breasts and other body parts to other cancers - I think I must take a stab at the monumental task of writing a book, if for no other reason than to connect with others who are walking this path.

Why am I telling you this?  Well, you know how smokers need to tell someone they are quitting and dieters go to Weight Watchers for the weigh-in?  Accountability can be a great motivator.  I am now accountable to all of you to keep this going and I hope that will push me along.

But I am so rusty at the long form after years away from it, I think it will help to begin by priming the pump with blogs and tweets. Someday - not promising when - perhaps I'll have filled the well enough to offer you all a drink.  

Fingers crossed, please.

A Time of Innocence, A Time of Confidences ...

The lyrics from Bookends always bring me to tears.  I know I will expose myself as tragically unhip when I say that Simon & Garfunkel provided the soundtrack to much of my junior and senior high school years. This song comes to mind often these days.


As I face my 40th high school reunion, I'm revisiting a question that was posed to me a few years ago when I first joined Facebook.  Back then, I was telling a friend how excited I was to communicate with someone from "back in the day." 


"Why do you even care about those people," was her question. "You haven't heard from them in years." I gave this considerable thought. True, I haven't  spoken to many classmates in 30 years or more, but for me, my teen life was a time of such heightened emotions (as is true for many people, I think).  Everything back then was such a big deal. And I've been blessed (or cursed) with a keen memory. All the high drama - good and bad - was part of what shaped who I am today. The various players in those theatrics are part of my history, and thus, part of me.


But as a lifelong writer, I realized a whole different dimension to the question. As most writers do, I think of life as a series of stories. For every kid I hung out with back then, the old question "whatever happened to ..." represents an unfinished tale and I want to know the ending! 


The past year has added an even deeper meaning to this question. During the dark days I spent recovering from my cancer surgery, when I posted on Caring Bridge for what I believed would be a small circle of people currently in my life, old high school friends suddenly appeared out of the woodwork to provide some of the most comforting support and insightful wisdom.


And here's the thing I love most about reconnecting with people on Facebook and through Caring Bridge:  Back in those days (the early 70's), everybody was labeled. There were the smart kids, the snobs, the sluts, the dorks (though we called them "queer" back then), the jocks, the hippies, and the "hoods" (the kids who were always getting in trouble).  


Fast forward forty years:  NONE of those labels make a shit of difference now. The girl who was labeled a "slut" back then is a pediatrician married to another doctor with two kids in college.  The "queer" dork who never had a date is happily married with a grandchild on the way. The snob has become a great humanitarian. The smart kid didn't bother to get anything more than a B.A. and is happily working in a low-paying job for a nonprofit group.  The former "hood" (you know, the one you just knew would become a criminal) is now a Wall Street executive - oh, well - maybe we could have expected that!  (Sorry, I couldn't help myself ... )  


These examples are fictional, of course, but my point is - I can't think of a single person I've reconnected with who let themselves be defined by their high school label. Most people grew up and built themselves wonderful lives, and I think that is absolutely amazing.  


So as I approach my reunion and remember those days when I listened to Bookends on a daily basis, I realize that with the incredible gift of the internet, Paul Simon's final lyrics no longer hold true.


Time it was and what a time it was, it was
A time of innocence, a time of confidences.
Long ago, it must be, I have a photograph
Preserve your memories, they're all that's left you ...


How lucky we are that our memories are not all that's left us. We are blessed to have so many wonderful reconnections. And yet, somehow, that song still makes me cry.

Life Flows On, Within You and Without You ... But Mostly Within You

Tomorrow will be a full year since my rhinectomy.  For those of you new to this story, one year ago, my entire nose was surgically removed to eradicate the Stage II melanoma that had taken root there.   


(See http://www.caringbridge.org/visit/barbaracaplanbennett/journal for the year-long journal about recovering from cancer and learning to live without a nose.)


I was going to start out this blog by saying that on July 5, 2011, my entire life suddenly changed.  But then I realized that was not true. I could say it changed on the day I got the diagnosis.  I could say it changed on the day the dermatologist told me I needed a biopsy.  I could even say it changed on the day someone told me I had chocolate on my nose (when I realized the deadly dark spot had become big enough to be noticed).


My point is, there really wasn't a single day on which my life changed.  It was truly a process.  There were many steps that ultimately lead to that surgery, and every one of them seemed life-changing.


But isn't that what most of life is -- a process?  Sure, there are instances where someone's entire life changes on a dime - a horrific car accident, a plane crash - something completely sudden and unexpected that no one could see coming.  But the vast majority of events in our lives are the result of actions that came before, whether we were aware of them or not.


I've come to believe that most of life doesn't happen to you, it happens because of you. Now, before you go thinking I'm one of those people who tries to "blame the victim" for a trauma or tragedy, please note the phrase, "most of life."  


A few years back, I spent considerable time studying Kabbalah, which teaches that we are responsible for everything that happens to us - based on our actions either in this or a previous life.  At first, I thought I saw the wisdom in this approach.  But over time, as I witnessed bad things happening to people I cared about, I began to question that teaching.


And when I was told I must lose my nose to save my life, I sat in bed with husband (who will hereafter be known by my nickname for him, "Aitch"), and asked what possibly could be the reason for us enduring this radical event. His answer was (to my surprise, since he had more ardent Kabbalistic beliefs than did I):  Sometimes shit just happens.  



People seem to fall into one camp or another.  Either they believe everything is completely random and no one has control over anything (i.e. shit always happens).  Or they believe (as Kabbalah teaches), that we are all responsible for every single, minute detail of our lives.
  
So here's where I've landed on the question:  Neither extreme suits me.  Those astrologically inclined would say it's my Gemini nature - but I believe absolutely that both are true.  Most of what happens to us in our life is the result of our own actions and beliefs. We have enormous control over many of our life events - power that we don't even realize we have - or responsibility that we don't want to take.  


And ... sometimes shit just happens.  The question then becomes, how will you respond when it does.



Obviously, none of what I've said is new.  It's all a rehash of various philosophies and spiritual beliefs.  As George Harrison said, "Life flows on, within you and without you."  I like to think the "within you" are the things you cause, and the "without you" are the random happenings.

In fact, I've probably come to this conclusion numerous times over the course of my life. But the human thought process is an interesting thing.  I believe we know a lot of things, but they get pushed to the back of our mind and forgotten - until something happens and we have to come to the realization all over again.


So today is the day for me to realize, once again:  I believe most of what happens to us is a process. Every step leads to another and another. Depending on whether you relish personal power or fear responsibility - this idea will bring you comfort or terror.  


It's Independence Day.  I choose comfort.