This Modern Writer: Wait With Me Here by Carmela Starace

A few weeks before a CT scan revealed a tennis ball sized tumor on the frontal lobe of my brain, I happened to be in the Beijing Airport.  Truly, I had no business being in the Beijing Airport or anywhere else in China for that matter.  I should have been home in New Mexico, working as an attorney, teaching at the university, revising the second draft of my novel.  And yet there I was, fresh from the twenty-two hour flight, watching a late March snow fall on the other side of the glass wall in the gleaming ultra modern Olympics worthy hanger.  The impromptu trip to China was just one in a series of increasingly curious decisions I’d made recently including taking a break from my ten year marriage, selling my house in the suburbs to my ex, and quitting my well paying job as an attorney to drive around the country in a BMW SUV I’d bought on a whim.  I was living high on the hog—and by hog I mean my credit cards—traveling to random places I had absolutely no reason to visit like Providence, New Orleans, Kennebunkport, Nashville, Durham, and Kentucky (to see the Derby.)   And now this.  China.

Anyway, that was the moment, standing in the Beijing Airport having made my way through customs and successfully retrieved my luggage, that I saw the sign.  Literally—a sign hanging on the wall three floors up from customs, next to the escalator.  It was meant to be helpful and, I’m sure to anyone who read Mandarin it was.  Beneath those neat Chinese characters, however, a less than helpful English translation was provided.  “YOU ARE HERE.”

This might have been a good piece of information if only there was some further statement about where, exactly, “here” was.  Clearly, something had been lost in translation.  Then I had another moment—I’d been having these moments more and more since the previous summer—where I wondered if it was just me who didn’t get it.  Did the sign make sense to everyone else?  Maybe I was the only one who didn’t know where “here” was.  Maybe, once again, I was the only one lost.  The sun broke through the snow clouds and reflected off the steel beams, catching my eyes, bringing me out of my trance.  I snapped a picture of the “You Are Here” sign with my phone and proceeded to grab a bus straight to the Great Wall.

It wouldn’t be until four months later, after the tumor was discovered, after I’d had brain surgery and lost all my hair and eyebrows to cancer treatments, that I would come across that long forgotten photograph from China.

It was one of those days; I had so many of them that summer while recuperating from the craniotomy.  All the free time I’d ever dreamed of having and no energy to do anything with it.  I was back in Albuquerque by then, back in my house in the suburbs, back with my incredibly understanding ex who was willing to take me back after the brain tumor diagnosis explained my odd behavior and sudden proclivities.  The best I could manage on those sweltering days was to lie on the couch as still as possible, burning up on the outside from the 96-degree heat, burning up on the inside from my daily morning radiation treatments, trapped with my slowly recovering brain.  The scar tissue from surgery, as well as the radiation on my prefrontal cortex, made for a slow recovery sidetracked by weird obsessions.  In June, I’d been obsessed with capturing my experience through writing short nursery rhyme like poems I jotted down on a notepad next to the bed.

I kept a pillowcase

just in case

you did not

come back.

U R A missing case

empty case

I still hold

your slack. 

 

But that was June.  By July, I’d put down the pencil and moved on to slowly and meticulously examining every photograph of myself in my possession.  Well, my old self.  I no longer resembled the person in those pictures.  It wasn’t just the loss of my long, thick, Italian hair or my ridiculous Brooke Shields circa 1983 eyebrows.[1]  No.  Something fundamental about my reflection in the mirror was different from those pictures.  The brain surgery had caused subtle changes in the symmetry of my face and the radiation made me look like I was dipping into a steroid pack for kicks.  Thousands of photographs of me from thirty-five years of living and not one picture even remotely resembled the person I’d become.

I wasn’t up for taking a new picture, not in my condition.  But I needed something to replace my Facebook profile picture, which was a photo a friend had snapped of me in the hospital the day before brain surgery.  Every time I logged in, I cringed at the sight of it.  Me, sitting in my private ICU room, wacked out on Ativan, grinning into the camera like a hooker on meth.  Classy.

Old pictures of me were out, and I wasn’t taking any new ones.  I needed a picture of a landscape or an inanimate object that could represent me.  For a while, I posted a drawing of Marcy from the Peanuts cartoons— we bear a slight resemblance to each other.  Then, I put up pictures of 80s movies posters.  Grease 2.  Vision Quest.  Fast Times at Ridge Mont High.  Desperately Seeking Susan.  Then, one sweltering afternoon, while rifling through files on my laptop, there it was: the picture from my first moments in China.  “YOU ARE HERE.”

That dumb sign, seemingly so random at the time, was the truest statement I could have possibly made about where I was and what I was going through during my eight-week course of radiation post emergency surgery.  I should be dead, BUT I AM HERE.  I have no idea where I am, BUT I AM HERE.  The answer to every question I had—Why me?  Why not me?  What is going to happen?  How did this happen?  Am I going to die?  What about the people I love?  How am I going to get through this?—was suddenly embodied by this three word translation.   It may have been fatally flawed as an information sign for tourists, but as far as affirmations go, even in what seemed a hopeless situation, this was a truth that could sustain me.

I kept the YOU ARE HERE picture as my Facebook profile picture for a long time.  All during that summer of thirty-seven radiation treatments and long into the fall when I was back at the University teaching creative writing in a bad wig.  I kept it up in October, after my friends took up a collection and raised three thousand dollars and sent me to an ayurvedic detox center in Iowa so  I could get the lingering drugs and radiation out of my system.  I kept it up that November, after I started practicing Transcendental Meditation for twenty minutes in the morning everyday.  For six months, beginning that July and up until December, it sat there, that picture on Facebook, suspended.  YOU ARE HERE.

I was waiting during those months, holding my breath.  And then finally December came and with it, my first six-month cancer screening, the first MRI brainscan since the craniotomy.  The first picture anyone would take of the new me.  The only picture that would tell the real story of whether the doctors had gotten it all.  Whether the radiation worked.  Or.  Whether the tumor had come back.

Cutting out a tumor is often a straightforward procedure, but mine was tricky.  My diagnosis had been delayed by almost nine months because my bumbling primary care physician diagnosed me as a bi-polar, depressed, hypochondriac who wanted attention in the form of expensive medical tests, rather than what I was— an educated adult woman whose brain was being eaten away by uninvited and overly zealous atypical meninges cells.  By the time he finally gave in and referred me for a CT scan, my tumor had been invading my brain and skull for a year and a half.

It was pure luck that the neurosurgeon on call the day I was rushed to the ER turned out to be the opposite of my idiot primary care physician.  Dr. Tron[2] was the senior attending physician at the teaching hospital.  He should have observed a resident or fellow perform the surgery, but when he saw how the tumor had weaved itself right into my bone behind my front skull, he decided to tackle it himself.  Rather than allow me to lose my entire forehead, he carefully removed it and burned out the cancer cells from the skull by hand, meticulously, carefully, and then put the thinner but still thick enough skull back.  When I woke, Dr. Tron told me he hoped that he’d been able to get it all, but that we’d have to wait and see.

And so I’d waited.

That first screening on December 2, 2010 ended up being a good day.  Dr. Tron came into the waiting room smiling at me, carrying my films.  He was happy for me and proud of himself.  He’d taken a big risk in putting my skull back.  The cleaner option would have been to remove my forehead and allowed me to wake up deformed.  But Dr. Tron valued petty things like physical appearance and he had the skill and heart to preserve what he could of mine.  A lesser surgeon might not have risked it. Dr. Tron gambled on me.  And that day of the first six month screening in December, we both felt we’d won.

What a great ending to the story, except that the story doesn’t end there.  I’ve had two more six-month cancer screenings since then; all of which involved blood work, MRI with contrast, and a visit with Dr. Tron.  So far, they’ve all come back “clean” with no invading cells.  It’s just me and my brain and lots of scar tissue, which acts a bit like a lobotomy on my once too big personality.  It’s a trade I’m willing to take considering the alternative.

My next six-month check is this upcoming Wednesday.  It’s Friday night as I write this and I know I’ll spend every moment between now and then obsessing about the test results.  I’ll wonder how to tell my mother if the results are bad.  I’ll plan something special for myself if the results are good.  The new John Irving book comes out that day.  Maybe I’ll go to Albuquerque’s last decent independent bookstore and pay full price for the new hardcover.  I will treat myself either way.

I could wait to finish this essay until then.  I’ll have an answer by Wednesday at noon and that would make for a neat ending, a clean way to conclude this essay.

Except that, it’s not a real ending.  Whatever the results on Wednesday, there will always be another six-month test waiting for me.  My brother died from a brain aneurism.  My sister died from a brain tumor.  My father died from cancer.  I will by screened for cancer for the rest of my life.  There really is no ending.  It’s a thought that makes me a little crazy.

But then I remind myself of that first moment in China.  Carmela.  You are here.  Today.  Regardless of what has or will happen.  Regardless of the next test or the test after that.  Right now.  You.  Are.  Here.

So I’m not going to wait until Wednesday to finish this essay.  I’m not going to give you your ending or answer the question.  You don’t get to know what the results are on Wednesday.  Maybe that will help you understand, even for just a moment, what I’m trying to tell you.  For the rest of my life, I’ll never know for sure what the results will be the next time.  I’ll never be able to plan beyond the next half of a year.  That’s life.  Shitty, beautiful, flawed, soul breaking life.  You wake up every morning and you are here.  But as for tomorrow, you just don’t ever get to know.