the tampon incident (or, taking back my cancer)

Posted on November 18, 2011 by Emily

A strange and unexpected thing happened the other day:  I made a conscious decision to share my cancer story with someone who had no idea I was ever ill.

Four years ago, my cancer came seemingly out of the clear blue sky.  Ultrasound, MRI, surgery – all in the space of a week.  I vanished from work without warning, and didn’t return until seven months later.  No time to create a cover story, even if I wanted to.  I’ll never know exactly how much information was “leaked” to my colleagues at the outset of my illness. But certainly by the time I returned, pale and bald, seven months later, everybody knew.  People may not know what kind of cancer or surgery I had (once in awhile, people still ask me if I am planning to “have kids,” and to my mind, they are always implying, “the normal way.”)  But they sure as hell know I’m the girl who had cancer.

But four years is a long time in my line of work; turn-over is steady.  This past summer, I started sharing an office with a lovely new attorney.  She’s quick and funny, constantly exuding positive energy.  She’s a total delight.  We’ve chatted a lot over the past few months about our families, partners, and interests, but until the other day, I’d never had occasion to share my cancer story with her.  In a way, it was kind of liberating.  But then, a few weeks ago, I started to realize that in order for me to feel truly connected to someone, in order for them to know who I really am, they need to know about cancer. 

A few weeks ago, a very young attorney from another unit in my office died suddenly of liver cancer.  I didn’t know her, but when the email circulated, and I saw the picture of her bright, beautiful young face, it was like a knife through my heart.  I wanted to cry and spit for this person I didn’t even know.  I knew it could have just as easily been me.

In the wake of this news, my officemate made a few passing comments about the tragedy of this woman’s death.  Strangely – or not – I found myself unable to utter even a word in agreement or acknowledgement.  I felt smothered by the legacy of my own cancer fight, and invisible, because my new friend didn’t know about it. 

The moment passed, but I unconsciously filed it away, thinking about the pros and cons of keeping my cancer selectively secret, especially from someone with whom I felt I was developing a genuine connection.

 Then, earlier this week, it happened: the tampon that broke the camel’s back. 

What the hell is this?

Honestly, it’s hard to believe that in the four years since my hysterectomy, not once had anyone asked me for a tampon

Until Wednesday.

My officemate and another new attorney from the office were going out to lunch.  The new attorney needed a tampon, and my officemate wasn’t finding one in her bag.

“Emily, do you have a tampon?” she asked me, innocently.

My mind froze for an instant.  “A what?,” I thought to myself.  Like I was an alien from outer space being confronted with some bizarre earthling contraption, like a telephone.

I quickly shook myself out of my daze.  “No, I don’t,” I said neutrally.

A minute later, they were gone, and I sat at my desk, feeling awkward and exposed.

I reflected on the ridiculousness of the scenario.  My officemate and I are constantly cracking up; her sense of humor is one of the things I most love about her.  After the initial awkwardness passed, I thought to myself (and imagined saying to her), “OK, clearly I’m not the tampon girl.”

Later that afternoon, prompted by the Tampon Incident, I decided it was time to “come clean.”

“There’s something I want to share with you,” I began, and then matter-of-factly (and only a bit tearfully) told her the story of my diagnosis.  Her response was loving and appropriate, (“Em!!  EMMMM!”), devoid of stupid questions, and totally not weird.  There was no gasping or recoiling, or suddenly looking at me like I was about to drop dead.  I even took her through some old photos, so she could see me bald and gaunt (again, “Emmm!”), and see the hilarious evolution of my hair.  And of course I told her about First Descents.

I explained that I wanted her to know this about me, because it’s a huge part of who I am now, and I didn’t want her to think, in moments like the Tampon Incident, that I was acting weird without explanation.  She nodded and then remarked that she’d thought it peculiar that I hadn’t commented on the young attorney’s death.  “Exactly,” I said, explaining how that news had knocked me sideways.  She totally got it. 

Ultimately, she gave me a big hug, and thanked me for sharing everything with her.   

The rest of the day, I felt liberated and light-weight, like I’d just done something absolutely right for me, reclaiming control of my cancer story.  I was reminded that it’s mine to tell.

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jet lag: a whirlwind trip to planet cancer

Posted on November 15, 2011 by Emily

Last fall, in the aftermath of my GI scopes, I remember coming home from work one evening and flashing back to the “bite blocker” being shoved between my teeth, and feeling like I was an escapee from some kind of horror movie.

What were these bizarre rituals to which I was now subject?  Was I just a full-time guinea pig as a result of my cancer?  Would the poking and prodding and scanning and scoping never end?

I am now a year further into my post-diagnosis journey, and I can comfortably say, no, it will not.  This is what my life looks like now.  If I am interested in staying alive, there is no point in fighting it.  I can be angry and sad all I want; but my life depends on this.  What I really ought to be doing is thanking Whomever for the chance to still be here, getting scoped and scanned on a regular basis, for the chance to try and realize some of my dreams – for myself, for the family I want to build, for the chance to create the elusive “something meaningful” that I hope will be my legacy on this earth.

It feels in a way that I have just returned from a lightning fast journey back to Planet Cancer –a place I no longer regularly dwell.  Like I’ve landed back after a trans-Atlantic flight, crossing the ocean back and forth in the span of a single day, and am wandering around a once-familiar landscape feeling light-headed, disoriented and fatigued.  And nostalgic for something I cannot name, perhaps for an innocence I have lost.

It feels in a way like I’m Superman, returning to life as Clark Kent after some miraculous, world-saving stunt.  Only in this version, the people I encounter in my life as Clark Kent actually know that I am Superman.  They know what I have fought, and endured, and how my heroism has manifested itself.  They want to acknowledge and congratulate me on the remarkable thing I have achieved.  But a moment later, they turn back to their own reality, while I, “Superman,” am left to wonder: What just happened?

There is no way to escape the isolation that accompanies the gown, the IV, the rolling into the operating theater.  It doesn’t matter that no one is cutting into me, pulling something essential out of me (along with the something deadly.)  Once you’ve been to that place, every sterile room, every masked and gloved person, is a reminder of the demons you have already fought.  There is no one who can go there with you.  It is yours alone.

Four days ago, I ran over 11 miles, in preparation for this weekend’s half-marathon.  For just over two hours I ran, strong, steady, unflinching.  Smiling, shoulders back, into the wind that whipped on Veteran’s Day.  I thought about the warriors I know; they are not the ones the day was named for, but they are the ones closest to my heart, so I honored them with each determined stride.  At the end of the run, I wanted to keep going.  I saw a glimpse of just how much further I can push myself, how much life there is in me, how boundless that force is.

As the weekend wore on, as I celebrated the ritual of “Fake Thanksgiving” that marks the annual visit from our California family, I felt the heaviness moving in.  I fought it off, with a glass of wine, snuggling with my niece and nephew, immersing myself in amazing fiction.  I did what I could.  But as Monday closed in, I felt like a deflating balloon, certainly not the same powerful woman who ran all those miles just a few days earlier.  This is what cancer does, even in the abstract, even when the threat is vague and remote.  It casts the entire world in a different palate.  Color drains.

It’s not the scopes, or even the preparation.  It’s no fun to be hungry all day, and spend all night on the toilet.  Honestly, the drugs are pretty sweet, and the whole thing is over before it begins.  No, it’s not the cameras up my arse and down my throat.  It’s what they signify.

It’s the fact that for the rest of my life, I will be waiting for cancer to strike again.  It’s the fact that I can never fully move on from the darkness that crept in four years ago, and which continues to lurk around the edges of my happiness.

So there are these days.  Days when I am catapulted back, pushed down sterile corridors, pricked with needles.

But these days pass.  The darkness recedes – perhaps not completely, but enough to allow the brilliance of the now to shine.

 

 

 

Posted in Life After Cancer, medicine, running | Tagged , , , , , , , , | Leave a comment

the whole story: thoughts inspired by “50/50”

Posted on October 17, 2011 by Emily

I am constantly running up against the thought that it’s time to stop this exercise, that my story is stale.  That it’s time to step aside and let some other young adult with cancer shout to the world – as if there were a finite number of ears to listen to us, a limited amount of psychic space for us all to share.  I mean, a few weeks ago when I visited my primary doctor’s office for a refill on my anti-depressant and to pick up referrals for my upcoming GI scopes, the attending said, “To look at you, you’d never know you were a patient.  That’s how it should be.”  I’m a healthy person.  Isn’t it time for me to stop writing about being sick?

Each day, as I look around me, I see things that I aspire to, that I want to be:  a stronger, more versatile yogi; a mother; a published author; a marathoner; a master gardener.  There is inspiration everywhere; there is so much to do.  There are so many angles to this story, so many chapters yet to be written.

What I don’t see when I look around me is acknowledgement of my experience as a young adult who has survived cancer.  Sure, in my confined universe of First Descents and Planet Cancer friends, I see myself reflected and honored.  But beyond that, in the world at large, not so much.  It’s this lingering sense of invisibility that keeps driving me to try and figure out how to explain my story to those who haven’t lived it, how to tell the whole of it.

With that in mind, I eagerly went to see “50/50” yesterday afternoon, with a survivor friend (and adoptive mother: how grateful am I to have her in my life?)  My pocket-pack of tissues at the ready, I sat down in the darkened theater fully expecting to see some significant part of my experience as a young adult facing cancer reflected on the screen.  But despite some truthful moments, for the most part, it never happened.

I accept and understand that every person’s experience with cancer is unique, but there was a universality that I longed to see on the big screen, depicted in a way that would hopefully make people who’ve never been through it understand the hell we have endured.  I can’t know what the film’s story looked like to someone who has never been diagnosed with cancer.  To me, as a survivor, it was lacking some essential part of our reality.

Maybe a protagonist who actually looked like shit as he went through treatment would have helped.  Joseph Gordon Levitt never appeared gaunt; his skin never took on that unmistakable chemo hue.  He looked like a healthy guy who shaved his head.

what's with the eyebrows? (as in, why does he have them?)

Maybe more than one scene depicting the emotional devastation of his diagnosis would have left me feeling like, Yeah, that’s it.  That’s the relentless pall that hangs over you when you’re in the middle of treatment, wondering if you’ll live or die.

Maybe if the film hadn’t shown Adam clinging to his mother as the anesthesiologist administered his drugs, and then breaking down as he’s wheeled into surgery.  Maybe if instead, they’d showed him all alone, facing a seemingly endless succession of doctors explaining things and asking him to sign forms while his mind, though blank, reeled with the reality that he was staring death in the face, I would have thought, Yup, been there.

I did experience that chill of recognition seeing the aerial shot of Adam being hoisted off of the gurney and onto the operating table; I did cringe as he vomited violently the night after his first round of chemo.  And I certainly laughed out loud many, many times, at the inept and absurd things that the people surrounding Adam did while they grappled with their own fears and demons.

But over-all, at the end of two hours, I felt like there was something vital missing from what the film portrayed.  Yes, it’s largely a comedy, and actually, in its humor, I thought the film and its gifted actors were quite successful.  But in its attempts to show the dark side – the REAL dark side, not some sanitized, palatable Hollywood version of the dark side – it certainly disappointed.

In the end, I’m not so interested in the reasons why “50/50” failed to achieve what I hoped it would.  What’s important, I guess, is why I wanted it to succeed in the ways that I had imagined.

Why do I need the world to understand what I went through – the suffering I endured, the indignities of treatment, the fear of facing death?  I’m almost four years out from my diagnosis; why does it matter?  At least in this instance, someone was trying to tell a story that was resonant in some basic ways with my own.  Do I appreciate that?  Absolutely?  Is it enough?  No, it’s not.

I guess the truth is that my own “alienation phase” has perhaps lasted much longer than I realized.  The feeling of invisibility lingers.

Each day, I have to push back against it.  Today, I had to directly confront my on-going inability to publicly celebrate a dear friend’s coming baby.  (Will I ever, ever get over it?)  Fortunately, there are those (including my friend) who understand, who are brimming with compassion.  But it feels like an endless cycle that I will be forced to repeat, a sense of different-ness that I will be unable to shake, at least until our own baby comes, and probably for much longer after that.

Today, too, I had to bristle, when I heard someone refer to a “real mother.”  As I wait to parent through adoption, the invisibility of my experience as a survivor is compounded by that of my childlessness.  No one can see the void that exists – where the person I was before my illness dwells, along with the child for whom I am waiting.

The good news is, I am getting better at all of it, through trial and error.  I am stumbling my way into defining my new reality honestly, truthfully.  I am working to embrace all of the wretched stuff that brought me to this moment that is so explosive, so full of promise, without having it drag me down, or hold me back.

I am working on telling the whole story.

 

 

 

 

 

Posted in adoption, cancer, Film, Humor, Life After Cancer, Writing | Tagged , , , , , , , , , | 9 Comments

a cat, and cancer’s complicating curse

Posted on September 26, 2011 by Emily

Last week, we put our first pet to sleep.  Gracie the orange tabby was with us for over ten years – through 9/11, our wedding, the arrival of Lucy the basset hound, cancer…the list goes on.  For a few weeks before that fateful trip to the vet, I was gripped with the sense that she was nearing death.  In an odd twist, my awareness of Gracie’s failing health put me in touch with a dormant anxiety about my own precarious state.  As I approach the four-year anniversary of my cancer diagnosis, I suddenly have begun to feel that my time on the clock of good fortune is due to run out.  I am, after all, genetically pre-disposed to other types of cancer.  Cancer has already struck once, and I am only 39.  How much longer can I possibly enjoy my current state of good health before the monster once again rears its fearsome head?

To those whose families don’t include four-legged members, to those who haven’t faced a life-threatening illness, this might seem the height of irrationality.  But the simple fact is, we invest an inarticulable brand of love in those closest to us, and their loss brings our own inherent vulnerability into a blinding kind of focus.  I felt a genuine heartbreak when I kissed our weary orange cat goodbye, and her absence is still acutely felt in our home.  Surely, she was a cat, not a human companion, and the challenge in carrying on after her departure is not of grand proportion.  Nevertheless, something we loved is gone.

Li'l Gracie loved her luggage

As the staff at the vet’s talked me through Gracie’s prognosis, as I watched her shiver on the exam table, tears flowed freely.  I took in the information, and accepted pats on the arm and offers of tissues.  At one point, as I felt my heart swelling with sadness and my tears gathering force, I was gripped by a sudden urge to divulge my own cancer story.  How peculiar, and seemingly absurd – watching my diabetic cat confront life’s end put me immediately in mind of my own tangle with the Grim Reaper.

What on earth would I have said to the unassuming veterinarian, or the compassionate technician?  It’s not like I needed to explain why I was crying.  Surely, this was a scene played out in the veterinarian’s office hundreds of times.  My emotion was nothing new to these people; bearing witness to it is an inevitable part of their job.

How on earth could I possibly have explained to total strangers how my cat’s death called up my cancer fight?  More precisely, why did I feel the need to?

The reality may be that I am incapable of facing the specter of death in any form without it connecting in some way to the legacy of my illness.  The fear, the sadness, the anger – all of it gets called up.  It’s a self-involved reaction, and one that shames me.  I hope eventually to untangle it from the never-ending cycle of life and death that surrounds us all.  It is a universal.  It is not about me.

As I watched my sweet cat decline, I felt the reverberations of my own mortality.  I saw our family lose a beloved member, and figured I surely must be next.  This, I have learned over time, is the unique logical fallacy borne of the cancer experience:  that we, as survivors, are ticking time bombs in a way that those have never faced cancer are not.  The truth, more accurately expressed, is that we, as survivors, by virtue of our own dance with mortality, may have a keener sense of the fragility of the human condition.  It’s an insight we never sought to bear.  Sometimes, when we are forced to say goodbye to someone we love, it manifests itself as a complicating curse.  Fortunately, on good days, it serves to heighten the sweetness that we’re blessed to know.

 

 

Posted in Death, Family | Tagged , , , , | 3 Comments

not yet

Posted on August 31, 2011 by Emily

I’ve reached the point where I have a stock reply when people ask if I have children:  “Not yet.”  It’s simple, straightforward and conveys my intention to be a parent.  Most people who ask me don’t know about my cancer history, so even though I always feel my heart sink a bit each time I hear the question, I don’t begrudge people for asking.

Today, I had the unexpected experience of someone taking this otherwise innocuous question to another level.  In court this afternoon, I found myself in a sidebar conversation with two other attorneys and the master presiding in the courtroom.  We were discussing a case involving a father of advanced years who had produced a child with a much younger woman with a long drug history (and 8 other children whom she had not raised.)  The conversation was somewhat pointless, as the master had already rendered her decision, and it mostly involved the parties involved discussing the burdens of child rearing.

At one point, for no discernable reason, the master looked at me smiling and said, “Do you have children?”

I offered my stock reply.  “Not yet.”

She persisted, leaning forward from the bench and staring deliberately at my belly.

“Any coming?” she asked.

I was stunned, and felt my face flush as my mind raced to images of tumbleweeds blowing through my abdomen.  I began walking away, laughing nervously.

“No,” I said simply.

All I could do was shake my head.

First, I kicked myself.  Why didn’t I just shoot back:  “Actually, yes.  My husband and I are waiting to adopt, and one day soon we’ll welcome a beautiful new-born baby into our home.”  Why did I freeze?

I quickly realized that not every moment is a “teaching moment.”  It’s not always appropriate to try and educate people about your specific circumstances, or the fact that something they’ve just said might be hurtful, or offensive, in light of those circumstances.

But then I stop again:  why do we always have to hold our tongues, and make excuses for the people who offend us, and refrain from vocalizing the hurt that people inflict when they make assumptions, or ignore the possibilities of a reality beyond their own limited experience?  I don’t really feel like I should be charged with enlightening people – attorneys, no less, who work in family court, and see adoptions happening every day – about the fact that there is more than one way to be an expectant parent.  But the truth is, I am tired of falling mute, of feeling smothered by the pain of my cancer experience and everything it has stolen from me, at the moments when I most need to cry out and be heard.

Perhaps the next time I find myself in one of these awkward situations, I’ll have the presence of mind, and balance of emotion, to offer a simple explanation of my status as a waiting parent.  The trick, I guess, is separating that fact from the memories of the illness that brought me to this place.  That’s the place where I get tripped up, where the legacy of my cancer pulls most forcefully at my heart.

In a wonderful bit of cosmic synergy, later in the day, after this bizarre interlude, I shared messages with a bunch of members of my young adult cancer posse about the upcoming film “50/50,” about a young man diagnosed with cancer.  For the first time in our lifetimes, a major film has been made about our experience.  We’re all unique, having endured different variations on the main theme of being young and facing cancer.  But there’s a universality to what we’ve been through that draws us all together, and particularly when there’s a chance for a wider, non-cancer audience to get a taste of what we’ve all been through, there’s a sense of cohesion and community that sustains and uplifts me.

Especially on days like today.

 

Posted in adoption, fellow fighters, Infertility, Life After Cancer, Work | Tagged , , , , | 2 Comments

ready for anything

Posted on August 25, 2011 by Emily

If there’s one thing cancer teaches us, it’s to be flexible, and ready to adapt to any and all circumstances.  Try as we might to control our surroundings, to plan for an ever-elusive future, there’s simply no way we can know what tomorrow will bring.

By way of example:  for weeks now, I’ve been looking forward to this coming weekend.  For the first time, my beloved nephew is scheduled to come for an overnight visit BY HIMSELF!  This is, in the life of any doting aunt, a momentous occasion.  When the little man whispered to my sister at the end of his Fourth of July visit that he wanted to stay with us for an extra night while his parents went home to New York, I did a silent little fist pump and thought, “It’s official: he totally loves us!”

the pumpkin in question (with the author)

Since hatching the plan for our weekend together, I have secured tickets for a Phillies game (including the Cliff Lee back to school gym bag!) and harbored visions of treating our favorite seven year-old to his first ever cheesesteak.  Chances are, I’ve been more excited about this visit than the boy himself.

But then, Hurricane Irene started roiling in the Atlantic, and suddenly the weekend is very much in question.  The plans I had to kick off the festivities with some First Descents shenanigans in New York before heading home with Oscar in tow, have already been jettisoned because of the coming storm.  The Phillies game has been rescheduled to Saturday afternoon.  And as of this moment (early evening Thursday), I don’t even know if I will be going up tomorrow to collect my guy and bring him down for the weekend.

Everything is up in the air.

uh-oh: here she comes

But really, when is that not the case?  We have fantasies about what life should look like.  We imagine unbridled lunacy, moments of delirious laughter and love, with friends and family.  We plan trips.  We believe we have some measure of control over what the next hours, days, weeks will look like.

Then the storm comes, or cancer comes, and life is suddenly a slate wiped clean of everything we thought we knew, of every plan that we’ve hatched, every dream we’ve nurtured.  From small things, like an overnight visit with a beloved nephew, to big things, like the chance to have your own child – it all hangs in precarious balance, subject to disruption at a moment’s notice.

I’ve spent the last 24 hours or so mentally preparing myself for my vision of this perfect weekend to be completely scrapped.  It makes me a little sad, but if things don’t work out, hubby and I will perhaps replace tickling wars and reading Harry Potter and the Goblet of Fire with popcorn and some good movies while we listen to the rain fall and the wind howl.

Eventually, the storm will pass, and we’ll start planning the next perfect weekend that may never come to pass.

So dream on.  Just be ready for anything.


Posted in Baseball, Family, Life After Cancer | Tagged , , , , , , , , , , , | 2 Comments

third time’s the charm: first descents, montana, july 2011

Posted on August 4, 2011 by Emily

They say the third time’s the charm.  But how can I possibly measure my most recent trip to the divine land of First Descents love and laughter against my previous sojourns?  It’s simply not appropriate.  So maybe all I can do it report, from the current front-lines.

My own cancer experience continues to recede, however slowly and grudgingly.  I would venture to say my body is once again, almost completely my own.  I hate to break it to you, my dear disease, but all you have ultimately served to do is make me a stronger and fiercer version of the person I used to be.  These words actually escaped my lips the other day, “I feel younger now than I did when I was 26.”

The Montana Family

Attribute that last statement in large part to the week I just spent in Montana, in the rivers and lakes of Glacier, with an outrageously beautiful group of young adults, many of whom have yet to see 30.  The energy, defiance and intelligence they exuded quite literally revitalized me.

Dance party, Going-to-the-Sun Road

Never mind that many of these extraordinary people are battling, or have recently battled, cancer.  If you came across us in a crowd, or along the side of Going-to-the-Sun Road, in stopped traffic, the last words you would use to describe us would be “weak,” “afraid,” or “sick.”  For we are the most vibrant, alive, joyful people you could ever hope to encounter.  You know you want to be just like us.  Unfortunately, the only way you can join our fabulous club is to stare death square in the face.  Still interested?

This was my third and likely final First Descents camp – at least as a “camper.”  Knowing that, I had to take the literal plunge – into the icy waters of Lake McDonald and the Flathead River, and experience the magic of First Descents the way it was initially conceived, in the cockpit of a whitewater kayak.

Patch, one of our absurdly gifted, patient and good-looking instructors, will tell you that I came up from my first trip under water while learning to wet exit and burst into tears.  I had so much fear built up in me about what the experience would be like, that when I finally confronted it, I just about imploded under the weight of my own anxiety.  A few minutes later, though, when I successfully wet-exited, my perspective shifted completely.  I popped out of the water, shaking my head like a soggy dog, and thought, “Well, then:  another mortal fear confronted.  Let’s do this.”

True, that was on a still lake, just feet from the shore, under very controlled circumstances, but it still felt like a triumph.

My beloved Spam hat

It wasn’t until the very last day of camp that I would be forced to wet exit in the midst of a roaring class-III rapid.  That, it turns out, was my REAL fear. But when it came time to finally confront it, I’d developed so much confidence in my skills, and so much trust in my instructors and fellow campers, that I wasn’t even actually afraid.  Instead of worrying about drowning, or smashing my face into a rock, I worried about the Spam hat that I’d affixed to my helmet becoming dislodged and floating down river.  Needless to say, when I emerged from the water, and grabbed onto the back of Iceman’s boat, and realized the hat was still attached, I felt an exuberant, deranged sense of relief and pride.  These are the moments that you can only experience with your First Descents family; these are the things that make life as a survivor an indescribable joy ride.

Camp this year also gave me the chance to grieve in a very precise way for the friends I have lost to cancer since the last time I was with First Descents, in April of 2010.  One of the greatest gifts that First Descents gives young adult survivors is the chance to relate and connect around our disease on our own terms.  As at past camps, the week in Montana was filled with quiet conversations about diagnoses, treatment and the reactions of our family and friends to our illness.  And as always, on the last night, we joined arms and cried together, and gazed into a candle-lit pool, remembering those we’ve lost, the parts of ourselves that we can never reclaim, and the lives we imagined we’d lead.

I left Montana with this peculiar fullness of heart that I experience only with my First Descents family – sorrow for what we have endured, gratitude for what we share, and hope for a future filled with our crazy brand of love.

 

Posted in fellow fighters, First Descents, Life After Cancer | Tagged , , , , , , , , , | 1 Comment

believed, seen: a dream comes true

Posted on July 15, 2011 by Emily

When a dream comes true after cancer, it carries a certain extra heft.  It need not be a dream of life-altering magnitude, like having a child.  It can be something much smaller, even seemingly trivial, like getting up close with the rock ‘n’ roll band you have loved your entire life – the life that was, at one point not so long ago, very much in the balance.

Yesterday, for me, was the fulfillment of that dream. After 26 years of U2 concerts viewed from around the back or near the rafters – any way other than in immediate proximity to the band  – I finally had the chance to go hard-core, camping out on a sun-drenched blacktop for 12 hours, before spending another 3-plus hours packed into general admission space, where I ultimately stood, with friends old and new, just feet away from my adorable, absurd and devoted heroes – a singular moment that had to be believed to be seen.

Cancer teaches many of us a familiar lesson: when faced with a freakish challenge, you say yes.  Do the thing that is outrageous, a little risky.  Why not?  You might be dead tomorrow.  You were almost dead yesterday.  Let’s do this right.

Luckily, my chemo and menopause-induced heat sensitivity has pretty much abated by now.  Even a year ago, I doubt I would have had the wherewithal to do what I did yesterday.  Also, luckily, I have gotten myself into the best physical shape of my life, and have (at least mentally) vanquished the neuropathic plague in my feet.  In my recently-retired running shoes (with their (RED) laces), I was rock-steady all day.  Strong legs, too, and an even stronger mind.  Endurance – my new middle name.  I was up for it.

But it wasn’t just my willingness to do something crazy, or my physical fortitude, that made yesterday happen.  It was also my new-found willingness, borne of my cancer fight, to open my heart to new people, to welcome them into my life – whether for a few hours sitting in the GA queue, or hopefully for many years to come.  Since emerging from the darkness two years ago, particularly since returning from my inaugural First Descents camp in Wyoming, this fearlessness has been an essential component of my rehabilitation, of my ability to build a life enriched by love and compassion and communication.

In the queue with friends old and new.

Through the magic of social media, just a week before the show, I connected with a pair of sisters who share my obsessive love of U2, and who, even from a virtual distance, I sensed were somehow kindred spirits on an even deeper level.  Arriving at the stadium yesterday morning at 5:45, I spotted them immediately, and hooked into a connection that grew over the course of our long, hot, dull (but occasionally quite dramatic!) wait in the queue, and which, by the time the lights came up just before midnight, I was certain was just beginning.

Oldest and dearest

Also along for the insane ride, and just as vital to the magic, were my oldest and dearest friend (who knew me back in the days of my first U2 concert, when we were all of 12, and in the seventh grade), and another brave cancer warrior whose quiet exterior masks a steely determination.  They, too, buoyed me, compounding the joy, steadying me as I stumbled, bleary-eyed, through night’s end.

And then there is this band, this music that reached right into my chest and grabbed my heart as I stood on the cusp of adolescence, and hasn’t let go ever since.  There is this transcendence, this inarticulable bliss that has always washed over me at a U2 show.  I know Professor Bono wants to give us all a crash course on human rights violations and third world debt, and his intelligence and passion are commendable.  I will read his Op-Ed pieces in the New York Times (and sometimes snicker a bit, I admit), and I get all the ONE campaign emails.  But truth be told, when I am in the middle of their sound, my mind is unplugged, and my heart is in over-drive.  I doubt I could ever explain what it is, or why it happens.  But it is a feeling that I have known virtually my entire life, and the rush of it is a shot to the soul like nothing else.

That guy.

Up close, feet away from these mere humans who have nurtured this ineffable magic for all of these years, there was a realness, and immediacy, that I could never before access.  Bono, up close, is a stocky fighter, singing like a true artist, devoted to the power of melody, to the emotion in every vocal moment – from the crystal clear and resounding, to the incomprehensible yet heart-stopping.  He works his ass off, and knows the flip side of the incredible feeling I describe here.  He may not be its lone architect, but he is its main and master communicator.

Together, these four musicians pull off a synergy nothing short of mystifying, and the fact that I lived to bask in its white-hot epicenter for a few short hours is nothing short of a miracle.

 

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a survivor’s wait

Posted on June 29, 2011 by Emily

Recently, I connected with the folks at curetoday.com, the on-line branch of the well-known cancer publication, CURE.  They frequently accept contributions from guest bloggers, and I told them I’d be interested in writing about my experience as a cancer survivor going through the adoption process.  After my initial offer to produce something, I put it off – like most of us do with something that’s scary or difficult.  Finally, yesterday, I coughed up a draft of my first attempt at writing specifically about how my identity as a survivor intersects with my new role as an expectant parent.  I’m still waiting to hear back from the curetoday.com editors, but in the mean time, I thought I’d publish my thoughts here, and maybe get a conversation going.  Thanks for taking the time to check it out!

Like many young adults, cancer robbed me of my fertility.  In back-to-back surgeries, I lost all of my reproductive organs.  My doctor’s initial attempt to preserve my fertility proved impossible, when early stage cancer was found in my uterus.  Within two weeks of my diagnosis with stage III ovarian cancer, it became clear that I would never be able to bear a child.

The loss of my fertility was not prolonged, or ever in doubt, after those few brief days between the initial detection of my tumor and the pathology report from my first surgery.  It was a done deal almost from the outset.  At the time, I was busy focusing on staying alive – there wasn’t much psychic space to mourn the children I would never bear.  That process of mourning was destined to take much longer, after the rigors of treatment ended, when the physical scars of my illness began to heal, and the emotional ones began to assert themselves.

Three years on, the sadness of not being able to have my own children persists in some remote way, but is tempered by the fact that my husband and I are now “waiting parents.”  Last fall, we connected with a wonderful adoption agency, and rather joyfully completed all of the requisite paperwork, profiles and trainings.  It felt amazing to be taking clear steps to building our family, to prove that we could still realize our dream of being parents, even after cancer.  We had heard many adoption horror stories, but as our own process unfolded, we felt nothing but support and positivity.

We are now about four months into our wait for our child – in adoption terms, this is a mere blink of an eye.  Still, because of the specter of cancer, it feels like an eternity, and in my weaker moments, I find myself gripped with a fear that because of my cancer, our child will never come.

Ours is an infant adoption program; the agency works with birth mothers to make adoption plans for their babies.  In most instances, the birth mothers “choose” the adoptive family.  The choice is based on a birth mother’s review of a profile the adoptive parents create, including autobiographies, photos and a letter addressed to the birth mother.  The agency provides any additional (and permissible) background information on the adoptive parents to help the birth mother make her decision.

When my husband and I created our profile, it never occurred to us for a moment that my cancer wouldn’t occupy a central place in the story of what led us to adoption.  In my own autobiography, I felt compelled to write at length about my cancer experience, how it changed and strengthened me.  We felt that anyone who wanted to understand what we are about as people would need to know about cancer.

When our profile was almost complete, we had an unexpected conversation with our social worker:  “You might,” she began, somewhat sheepishly, “want to think about taking out the reference to cancer in your Dear Birth Parent letter.”  The letter was the first page of our profile, and served as a quick introduction; later in the profile, each of our autobiographies contained more detailed information.  Our agency told us repeatedly that women often never even read the full autobiographies, that they tended to rely on the photos and opening letter.

We got the picture right away:  put your cancer in the closet.  Subtext:  women are not going to want to place their baby with you if they know you’ve had cancer.

Needless to say, my husband and I both bristled, and we got into our one and only uncomfortable conversation with our social worker.  In the end, though, we acquiesced.  The point is to adopt a child, not to go on a crusade to try and educate every birth mother who reads our profile about the fact that cancer doesn’t have to be a death sentence.  So we set our convictions aside, and left the cancer reference out of our opening letter.

Still, maybe because of that one difficult conversation, or maybe because I can never fully escape from the reality of how cancer permanently altered my path to parenthood, I carry this fear.  It is a fear that because of my cancer, I will never be a parent.  Never mind that our agency’s director always makes a point of telling waiting parents:  “everyone in this room will be a parent.”  She means it, and in my rational mind, I know it’s true.  Our patience and determination will be rewarded; our child will come to us.

But when I sit in a room filled with other waiting parents, and look around at their eager, anxious faces, I can’t help but wonder just how different my wait feels, when it is cancer which has brought me to this place of anticipation and uncertainty.


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levon helm + cancer: an all-ages show

Posted on June 12, 2011 by Emily

It’s safe to say that an aging rock musician, whose arguable heyday was thirty-five years ago, doesn’t have much interest in being a cancer crusader.  Old people are “supposed” to get cancer, especially after a lifetime of hard living and three packs a day.  The price of fame, perhaps.  So it goes.

But Levon Helm isn’t your average dinosaur from a long-gone era of classic rock.  And he wasn’t even old when he was diagnosed with throat cancer.  And the price of his fame is about much more than a cancer diagnosis, and seems to be caught up in the tortured and well-documented dissolution of his relationship with his one-time brother and Band mate, Robbie Robertson.  But that is a story for another day.

Today, four days after an evening with Levon and his band, I am busily untangling what it is about him – his musical energy, and his cancer story – that moves me so, that has hooked into me in such a profound way.

I fully admit that I came to Levon through the back door – several of them, actually.  Early in my musical education, The Band was just another artist on “The Big Chill” soundtrack, and Robbie Robertson was the (alleged) author of a few tunes that appeared in the “Great Songs of the Sixties” songbook that I religiously studied in my days as a passionate but not very skilled piano player.  But in those days, Levon, who I would later come to understand as perhaps the essential life force behind his complex and ingenious Band of brothers, was unknown to me.

Fast-forward a few years, and my obsessive love of U2 led me to discover Robbie Robertson’s early solo records.  His raspy voice and musical atmospherics drew me in, and not knowing any better, I quickly assumed he was The Band’s primary creative genius.  (Plus, who can resist that scarf in “The Last Waltz?”)

When Mike and I moved in together in 2000, we developed an unexpected tradition of coming home from an evening’s revels, popping in the DVD of The Last Waltz, and watching selected scenes and performances.  We got to know Neil Young’s coked-out craziness, Van Morrison’s unitard pantsuit and Neil Diamond’s giant sunglasses.  For lovers of rock and roll, there are few pleasures greater than the performances assembled in Scorsese’s film.  It is truly musically orgiastic.

But it wasn’t until we attended a 25th anniversary screening of The Last Waltz, and I saw Levon’s energy depicted on the big-screen for the first time, that I really began to understand what he was about.  Behind his kit, singing his heart out, he was someone truly extraordinary, communicating an incredible joy and passion through his music.

What I didn’t know at the time, as I sat mesmerized in 2002, was that Levon had been diagnosed with throat cancer several years earlier.  So much of what I have learned about him has been after the fact – his decision to undergo extended radiation rather than recommended surgery, a decision presumably made with the hopes of saving his voice, but which ended up destroying it anyway; the fact that he began his Midnight Rambles at his home in Woodstock as fundraisers to cover his medical expenses; that his musician daughter put her own career on hold to return home to take care of Levon while he underwent treatment.  In the end, fame aside, Levon Helm was just another human being facing cancer, trying to figure out a way to stay alive.

Over the past ten years, I have immersed myself in the massive Band catalog, and developed a deep affection for Levon’s singing and playing.  One of the things that initially attracted me to The Band was the presence of so many distinct singing voices, and the way they blended, swapping verses and lead lines – from one track to the next, there is an ever-changing tone and texture, depending on who’s out front.  That being said, there has always been something about Levon’s voice, high and clear as a bell, and the way he was able to belt it out while simultaneously pounding out some of the fiercest drum lines in rock history, that has hooked into me.  Watching him sing and play is like watching ecstasy in motion.

Cancer and radiation destroyed Levon’s golden voice, and he has worked diligently to restore it to a workable form.  He’s recorded albums and plays constantly – usually at his home base in Woodstock, but once in awhile (as last week outside Philly) he takes his show on the road.  What a blessing, then, to watch him play Wednesday night, a huge, infectious smile on his face the entire time.

But we were not to hear that voice.  Levon didn’t sing last week; he didn’t even speak.  He smiled and acknowledged the crowd all through the show, and even in silence was the essence of graciousness.  The closest we came to hearing his voice, though, was the trace of a hoarse whisper as he counted down intros on a few of the numbers.  Beyond that, nothing.

It was a shock, and a disappointment, in an otherwise joyous and remarkable evening.  Levon has assembled a truly phenomenal group of musicians, including his daughter, led by the perversely gifted Larry Campbell.  Gorgeous vocal performances were in abundance.  But Levon’s voice was not among them.  Perhaps his vocal chords were just tired, and he didn’t want to diminish the quality of the performance.  Perhaps he’s had a setback, or just a cold.  Regardless of the reason, though, the silence was deafening.

You might look at Levon Helm today and see a frail old man, a ghost of his formidable former self.   But when I watched him the other night, I just saw another cancer survivor, robbed of an essential part of his identity, living with joy and vigor, shouting to the world (however wordlessly) about how much he has left to say.

The day after the show, high on the magic Levon and his band created, I came across an interview with Levon from 2007.  In response to a question about how hard it was “as a singer” to have to deal with a disease and treatment that ravaged his voice, Levon smiled and said, “I never thought of myself as a singer.  I always thought of myself as a drummer.  As long as I can keep playing, I’m happy.”

Thankfully for all of us, Levon continues to play his drums with a skill and feeling that is undiminished by time or illness.  He plays like no one else, spreading joy and beauty with every beat.  But to me, his voice always sounded like something straight from heaven, or some other very happy place.  So I hope that Wednesday night was an aberration, and that we’ll be hearing him sing again soon.

In the mean time, his journey through cancer and his resurrection as a changed but still brilliant musician, provides a lesson for us all.

 

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