a different kind of marathon

Today marks my first day of rest since officially embarking on training for the Philadelphia Marathon in November.  I ran five of the last six days, in soul-crushing heat and humidity.  Mercifully, I had a great running companion at my side for Saturday’s grueling 8.5 miles.  I’m delighting in my day off, but my mind remains focused on the 17 weeks ahead.  I’m proud of myself for getting out there every morning this past week, but know better than to pat myself on the back too vigorously at this early stage.  There are countless miles to go, literally and figuratively.

At the start of this berserk challenge, I can’t help but think back on my four months of chemotherapy for stage III ovarian cancer.  Then, it was the bleakest of the bleak mid-winter.  The days were relentlessly gray and cold.  It rained forever.  The sun, it seemed, had gone into extended hiding, as if it had no business shining on my fight.

Those black days were the beginning of a very different kind of marathon.  My husband, hoping to gain some measure of control over a situation that seemed otherwise completely beyond any, printed out a stack of calendar pages, each one marking a week in the epic journey on which I was about to embark.  Pages to keep track of my seemingly endless medications, pages to mark time, to give us some measure, some way to feel that we were moving toward something – health, cure? – and moving away from something else – death?  In such moments, any small means of taking an active roll in your fight, doing something to push back against a seemingly invincible foe, must be embraced.  Any tool at your disposal feels like a lifeline.

Just a whole lotta miles.

Just a whole lotta miles.

In anticipation of beginning training, I memorialized my running schedule on our family’s master calendar.  Each day is marked with the number of miles I must run – or as a blissful “rest day.” As I plugged in the numbers, as they climbed up and up and up – 20 miles???  I am supposed to run 20 miles???? – I felt my heart begin to sink a bit.  I thought not so much “I can’t do this,” as I did, “This is insane, and could prove incredibly difficult.  I can only hope I am really up for this.”

Until that moment, I’d been in a state of excited ignorance about the rigors of marathon training.  I was just so unabashedly fired up at the prospect of running my first 26.2.  After all, I’d run five half marathons in the last two years, the most recent being my strongest by far.  How could I not be ready for this?  I’d also enlisted two friends to run with me, and I had their enthusiasm to bolster me.  Wasn’t this just going to be a four month long psych-fest, as I shared virtual fist-bumps with my friend training in Denver, and actual fist-bumps with my local running partners? Wouldn’t we meet at the starting line in mid-November, lean and limber and as ready as humanly possible to rock 26.2 miles?

Well, much of this remains to be seen, but now that the reality of training is upon me, and the extreme heat of mid-summer is roasting our bodies and brains, I am prepared to acknowledge the arduousness of what I am setting out to do.  It’s going to take all of me – discipline, a relentless focus, an unwillingness to quit when things get hard, a good few aches and pains, and probably no small amount of tears.  Not unlike a certain bleak four-month stretch all those years ago.

When I started my treatment for Stage III ovarian cancer, my oncologist told me, with grim honesty, that the treatment was grueling, and would have a significant impact on my “quality of life.”  (Who, at the age of 35, ever expects to hear those words, or even understands what they mean?)  She also told me that some people find the treatment too taxing, and decide not to complete the prescribed six rounds of chemo.  It never dawned on me that I wouldn’t undergo all six rounds of treatment, even as things grew harder as the months wore on, as my stamina flagged and my heart sank further into blackness.  Quitting was never an option.  I wanted to live.

Today, I want to run.  I want to run 26.2 miles through my beloved city.  I want to run for the friends I have lost to this wretched disease, and with the friends who have cheered and loved me through my trip to the brink and back again.  Every stride will be a reminder of both how far I have come, and of a journey that will never end.

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The rain won’t stop.  The spring and early summer have been a seemingly endless stretch of rain-soaked days.  The world has turned relentlessly green.  I’ve heard weather-related griping about commuting into the city on rainy morning after rainy morning; wet basements; treacherous roadways; general gloom; cabin fever; oppressive humidity.  All worth grumbling about, I suppose.  But while others have reached their limit, and can’t take another drop, I, perhaps perversely, have been basking in the life-giving power of the rain, and what it has done for my burgeoning gardens.

Like so much of what is most meaningful in life today, my passion for plant-life grew out of the transformative experience of cancer.  In the present, everything I do to tend and care for my gardens is rooted in the energy I devoted to our little backyard on Orianna Street, all those years ago.

I rarely invoke fate, but in hindsight I feel there was some sort of cosmic force, which lead us to the house on Orianna Street, with its secret back garden, where we lived (and nearly died, it felt) during my cancer treatment.  I was diagnosed not quite a year and a half after we moved in, and during the springtime of my treatment, our small back plot, with its lovingly planted perennials, became my refuge.  I knew nothing about plants when we arrived, but under the tutelage of a wise friend from work and my beautiful neighbor, I slowly learned.  But most of what happened was instinctive.  We’d been blessed with a gorgeous, miniature oasis, blooming in carefully planned cycles throughout the spring and summer.  As I fought this disease, I was driven to help nurture these other living things, to keep them healthy and vibrant.  I wasn’t sure I could do it for myself, so at the very least I could do it for them.  This tending felt essential to my own survival.

My memories of myself during treatment are of being drained of life and color.  I would catch myself in the mirror and see a ghost.   Life and color, then, were forces to be treasured, and held sacred.  Watering, weeding, deadheading, mulching – all of these became rituals to sustain my flagging spirit.  With solemn determination, I would pour my limited reserves of energy into our garden, and then sit back and breathe in its bounty.

You've come a long way, baby.

You’ve come a long way, baby.

Last year, I visited our old neighbors, and learned that our landlords, who had recently moved back into the house on Orianna, had torn out the garden, after the tenants who came after us had cut everything back to make space for keg parties, or something equally blasphemous.  From a high window in our old neighbor’s house, I looked down into the yard and saw the newly designed outdoor space, barren of greenery, where the garden used to be.  It broke my heart a little bit, but not entirely.  For the life from that oasis that nourished me during my darkest days carries on in my own new gardens, just across the river.  The irises and coreopsis and sedum that I dug up and transplanted in miniature three years ago have powerfully taken root in new beds, and have been joined by exploding hydrangea, rosemary, loosestrife and day lilies.  I continue to find joy and delight in ensuring their health, just as much as I do in taking care of my own.

I love this rain-soaked stretch we are in, as it gives everything I have planted a sweet, sustained drink.  There is green everywhere, and splashes of color.  There is robust life.  Nothing could be more remarkable.


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In preparation for an upcoming panel discussion about young adult cancer and social media, I’ve been thinking back on the motivating purpose behind my years’ worth of writing about cancer and its aftermath.  This reflective process began slowly a few weeks back, and has been intensifying in recent days.  My first realization: I am no kind of expert on anything. I am one person, with my own experience.  Cancer may touch us all in some universal way, but it also has deeply personal and distinct repercussions for each individual who falls prey to it.  Honestly, I am not sure what meaningful insight I can offer about my haphazard life as a cancer blogger.  As my husband remarked about Keith Richards when his tell-all memoir came out: “If you want to know about Keith, just listen to the music.  It’s all there.”  In order to explain why I have persisted in this seemingly self-indulgent exercise, so long after finishing treatment, all I can really offer is every word that has preceded these.

A part of me feels I’ve long since drained the well of my cancer experience, and that the “why?” and “what?” behind it all is embedded in words already written here, or maybe even here.  I just celebrated five years cancer-free.  My oncologist told me last month that I’ve “graduated” – to yearly check-ups, not from Cancer U. completely.  Isn’t it enough already?  I have a child to raise and am gearing up to train for my first marathon.  There is more to life.

There is more, but it isn’t enough already.  It isn’t enough, because cancer keeps happening – hopefully not to me again (though there’s a decent chance of that) but to other young people all around me, and they are entering my life in varied and unexpected ways.  Periodically, I get an email from Imerman Angels, and they put me in touch with another young woman with ovarian or some similar gynecologic cancer.  A few days ago, my mother-in-law called to tell me that the wife of one of her cousins was just diagnosed with ovarian cancer, and to ask if I’d be willing to talk to her.  So the other day, before mowing the lawn, I put on my Survivor Hat, sat on our front step, and spent almost an hour answering questions and reflecting on my own cancer journey.  Here on the verge of summer 2013, five years later, cancer feels very much alive and well, occupying a central and powerful place in my consciousness.

hopefully it's not all blah blah blah

hopefully it’s not all blah blah blah

In trying to unravel the meaning of these endless piles of words, the purpose they serve, I suddenly think about the oral tradition – how stories, repeated endlessly, are passed on, carrying meaning, providing lessons and insight for generation after generation.  My story perhaps has meaning not because it is “mine,” or “about me,” but rather because it represents hope for someone else, someone at the starting line, facing the unknown.  In telling this story over and over, to different people, and from different angles, I strive for humility, and universality.  Every time I talk to another young woman facing ovarian cancer, I am always careful to say, “Everyone is different.  Everyone has a different experience.”  And it’s true.  The woman I talked to yesterday seemed very concerned about being able to work through her treatment.  I told her I was out of work for seven months, between surgeries and chemo, and couldn’t really have fathomed attempting to work in the condition I was in.  But that was me.  Whether by virtue of my naturally reclusive temperament (and perhaps the fact that I was dissatisfied with my job) or the rigorous course of treatment to which I was subjected, I in some ways needed the kind of isolation that I ended up experiencing.  I needed the space  – when I was feeling well enough to appreciate it – to try and understand what was happening to me.  Cancer was, for me, as much about the psychic process as the physical one, and I don’t think it’s an overstatement to say that it nearly swallowed me whole.  Another person, differently disposed, undergoing a different course of treatment, will react and fight in her own unique way.

In spite of the things that make each person facing cancer unique, the common element, whether or not explicitly acknowledged, is the fear and uncertainty.  Terror does not seem too strong a word.  So while I may not speak openly with all of the young women I’ve come to know through cancer about our shared fear of dying young, of leaving our families or never being able to have them at all, the fact that I am still here, at this point, this far out, may just be all the tacit reassurance I can offer.  It may also be what is needed most.

So why this, then?  Why don’t I just plant a flag on the moon of my survivorship and be done with it?  Perhaps because cancer gave me the excuse to finally be the writer I always dreamed of being.  I never took writing workshops or seriously pursued writing professionally (sorry, attorney friends – brief writing doesn’t count.)  But one truth about writing always stuck in my head: “Write what you know.”  My brief flirtations with writing fiction always seemed to fall flat, felt false and strained.  But the volumes upon volumes of journals I kept all through adolescence, and the vigorous epistolary dialogues I maintained with many friends for years and years (back when people wrote letters) – in those heaps of words, I would periodically sense a lyricism, or a truth, that felt important and real.

In the form of cancer and its attendant upheaval, I finally found a story worth telling, or at least a story that had the potential to mean something to someone outside of my own head (the curse of every devoted journal-scribbling adolescent.)  I can say all of this with a straight face because other young people  – especially women, especially ovarian cancer patients – have told me that my story has given them a measure of hope, a reason to believe that they, too, might live to see Five Years Out.   The power of this story that I have been blessed to live out is simply that it continues to unfold, that I am here to tell it.

As long as there are those who need to hear this story, I will continue to tell it.  With its repetition, hopefully its meaning with change and deepen.  Telling it, and connecting with those who benefit from its significance, continues to feed my own spirit.  For life, once cancer recedes, remains hard and confusing.  It grows more beautiful and poignant, but it never stops being complicated.  For me, the telling of this story is a reminder of the heartache and loss which defined so much of my first years in the throes of cancer, and the nightmarish hangover to which it gave rise.  It allows to me to hold close friends I have lost, and those who continue to fight much harder than I ever had to.  For others, I only hope that mine is a story that offers some measure of reassurance in the face of so much that is unknown.

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Last weekend, at the First Descents Climb-a-Thon, our belayer was, quite unexpectedly, a 14-year-old boy.  When the day began, I formed a climbing group with another cancer survivor, her brother and his girlfriend.  I liked them immediately.  There was a toughness, a snarkiness, in this other survivor – traits, I believe, that many of us share.  Perhaps these are traits borne of having endured the very worst.  Regardless, it took no time for that familiar survivor affinity to take root.

As FD campers, we are used to encouraging and supporting each other no matter how messy, awkward or fearful we may be.  We are used to instructors who are patient, intuitive and big-hearted.  What we are not used to is having kids young enough to be our own children (in my case, at least), non-chalantly belaying us, telling us we “got this,” when we hit a snag on our climbs, and asking us, with unthinking reflexivity, if the reason we asked to come down before we reached the top of a route was because we “got scared.”  To be fair, our young belayer was just that – young – and the innocence and naivete of youth are qualities we have all possessed at some point in our lives, and in many ways, are to be treasured.  Still, gathered that Saturday afternoon to climb for ourselves and other survivors, there was something peculiarly unnerving about having a teenager on belay, keeping us tethered as we fought our way upward.

As the afternoon wore on, and our climbs grew more challenging, my fellow climbers and I shared bemused asides as we marveled at the irony of this young boy who had our lives in his hands.  “You’re thinking too much,” he’d say at times, or, as a proposed solution to one of us who was stuck mid-route, “Just do it.”  If only.

Looks scary, no?

Looks scary, no?

At day’s end, it dawned on me:  how could this boy possibly know what we have seen?  What are the odds that at 14, he’d ever even considered a world where things were unattainable, unfair, painful or Terrifying with a Capital T?  Sometimes, I wanted to say to him, just trying isn’t enough.  Sometimes, sheer force of will isn’t enough to get you past the overhang and onto the next foothold.  Sometimes, there is something real and very scary blocking your way.  And sometimes, you don’t end up raising your arms in triumph.  Sometimes, you are bested.  And depending on the nature of the beast you are facing, sometimes you just don’t make it.

An ornery indoor climbing route is not cancer.  But just as when I was on rock for the first time in Wyoming three and a half years ago, the struggle to conquer that route called up many of the same feelings that marked my experience fighting my disease.  My new survivor friend confirmed the universality of my reaction, as she grumbled about how she would have appreciated more active support and instruction from our young guide, rather than his uninspired clichés and generally blasé attitude about what we were trying to do.  Her grumbling made me laugh: YES, I said. THAT KID HAS NO IDEA WHAT’S OUT THERE IN THE WORLD.  DOESN’T HE REALIZE WHAT WE HAVE BEEN THROUGH?  We were laughing, but we were semi-serious.

In a bit of symmetry, the yoga studio where I practice is this month considering the theme of sickness, disease and death.  (Fun!)  Perhaps it goes without saying that every time I am on my mat, I think about my illness, and specifically the toll it took on my physical being.  But this month’s theme is resonating particularly forcefully, as it is allowing me the opportunity to consider the inevitability and the value of struggle – and the foolishness of attempting to attain perfection.  I will never be “thankful” for my cancer.  But I will continually strive to retain the lessons it taught me about struggle.  I did not endure cancer’s wrath because of the strength of my spirit, no more than my friends who succumbed to the disease died because of the weakness of theirs.  That part of the equation is down to simple luck – good or bad.  But when cancer takes us through its torment, it is forcing us to confront life’s screaming imperfection.

pincha mayurasana: hard

pincha mayurasana: hard

Yoga, like cancer, has taught me to embrace imperfection, and the power of struggle.  This morning, I continued my struggles – destined to be long, and perhaps never-ending –    with pincha mayurasana.  Each time I approach this forearm balance, I feel leaden, constricted, and certain I will break my neck.  But I keep at it, and hopefully, each time I approach it, I chip away at some of the fear that is holding me back.  As a child whose eyes may not yet have strained to find light in life’s darker recesses, our young friend from the climbing gym last weekend most likely doesn’t think about being on rope  – reaching, pushing, slipping, straining – as a metaphor for much of anything.  But the survivor in me will forever view physical challenge – on rope, on the mat, on pavement – as a reminder to embrace what is hard, and let go of imagined perfection.




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mid-life young adult cancer crisis

Has my license to write about cancer expired?  I’ve been thinking about the countless numbers of young adults who have been diagnosed with cancer since I entered this universe over five years ago.  I’ve mused on the lives lost, the brave people I knew who this rotten disease managed to take down.  I’ve thought about the people I know who have devoted their lives so much more actively and purposefully to the “cause.”  At this point, what does my life have to do with cancer?  Does the crowded world of cancer bloggers require my highly irregular reporting about my “life with cancer,” when I’m perfectly healthy, and when my “life” is really about so many other things at this point?

These are not questions I ask in order to prompt support from people saying, “You have so much great stuff to say.  Always keep writing.”  I ask these questions because with each passing day that I am away from my chosen profession, home raising my son, I wonder what I am doing to be an active and meaningful voice in the world of young adult cancer.  Being the best mother I can to my son doesn’t feel like enough of a transformative gesture; I would have been doing that regardless of my diagnosis.  After all these years, I still feel compelled to be Doing Something, shining some kind of light.  The sense of isolation I felt during my period of diagnosis, treatment and even the early stages of my recovery is something I will never forget.  Once I regained some semblance of physical and emotional stability, I pledged that I would do whatever I could so that other young adults going through similar ordeals would not have to endure that same feeling.

Never mind that it feels somewhat disingenuous to even call my self a “young adult” at this point.  With my diagnosis at age 35, I was already on the outskirts of young adulthood.  Five years later, I have arguably entered mid-life.  Isn’t it time for the old folks to step aside and make way for the next generation of young adult cancer warriors?


once a climber…Moab, UT, April 2010

It is no accident that these questions have arisen in the wake of my decision to participate in a First Descents fundraising Climb-a-Thon next month.  Not so very long ago, First Descents felt like the beating heart of my cancer survivorship.  After all, without that remarkable organization, I might never have seen my way out of the post-treatment wilderness.  From August of 2009 to July of 2011, my life seemed in some way measured in intervals between camps.  During that time, it was impossible for me to imagine a time when FD wouldn’t be a constant force in my life, or a time when I would go more than a few months between camps, fundraising events, or athletic challenges taken on under the Team FD mantle.  After kayaking in Montana in 2011, when I decided that my camper days were likely over, I was committed to remaining actively involved with the organization and its spirit.

Parenthood, understandably, changed everything.  Time became a rare and precious commodity.  Priorities shifted, seismically.  Our family’s entire center of gravity changed, and my husband and I both instinctively adapted, making time with and responsibility to our son our chief priority.  The magic and mystery of becoming a parent almost seamlessly reordered our lives.

Last week, when word of a local First Descents fundraiser came through my email, this dormant fire in me began to flicker anew.  It’s been nearly three years since I was climbing in Utah; I shudder to think of the physical struggles I may face when I am on rope at GO VERTICAL in two weeks time.  But the pull was irresistible, so I cleared the time on our family’s weekend calendar and signed up.  I even started plugging the event on social media and scrounging for donations from friends and family who are probably suffering from a bit of charity fatigue.  It felt like I was being reunited with a long-lost friend.

My hope is that when I arrive to climb on March 2, I will encounter a whole new group of fierce young adults who are living with cancer or its aftermath.  Some of them may be half my age.  But rather than feeling like an ex-young adult cancer survivor, I hope to be able to show, just by being there, that life  – fully lived – does indeed go on “after” cancer.  When I sat in my hospital bed after my first surgery and listened to one of my doctors talk about what surveillance might look like YEARS down the road, I cried and shook my head in dismay.  It seemed like an impossibility that would never come.  At the height of my health crisis, the future was meaningless; it couldn’t exist for me.  The life-giving parts of my body had just been cut out of me.  So had cancer, but all I could feel in that moment was the absence of the life I would never be able to create.  At 35, what could the future possibly look like, and would I even live long enough to see it?

But at 40, here I am: Mom to the most beautiful boy in the world; climber, of sorts; fundraiser for the group to which I owe so much of my life after cancer.  Perhaps what’s meaningful is that I am still here to do any of this at all.

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moments of surrender

As it turns out, there is much more to fear in life than the onset of a life-threatening illness.  Fear of weakness, of facing limitations, of inadequacy, of conflict, of vulnerability – over the last five years, these manifestations of fear have all lurked around the psychic periphery since cancer tried and failed to fell me.  These manifestations are perhaps less dramatic, but no less hindering, than fear of a life cut short.

When I began my post-cancer yoga practice almost two years ago, I never expected that one of its primary lessons would be about recognizing the on-going power of fear.  After finishing treatment, once the long psychic hangover of chemo resolved, I joked that now that I’d faced cancer, there was really nothing left for me to fear.  It’s a truism about cancer survival that my experiences with First Descents drove home, powerfully and repeatedly.  As I rappelled off an enormous cliff in the Grand Tetons in the summer of 2009, the terror that gripped me was not of my ropes snapping and plummeting to a rocky death; it was reliving that which gripped me when I woke from surgery to the news of my cancer.  And reliving that fear, with awareness, helped me to conquer it anew.

But the conquering of fear ultimately may be a practice, like yoga, rather than a finite act.  Surviving my illness allowed me to pass through one kind of fear, leaving me in a place where its legacy is far more nebulous, but just as potent.

looks pretty, right?

Last Monday, after weeks of procrastination, I finally reached out to my yoga teacher about my problematic relationship with wheel pose.  It’s a pose that I’d easily attained in my life prior to cancer, when I practiced yoga sporadically and less seriously – when my body was much younger and leaner, before it was battered by surgeries and chemo.  In my current body, though, wheel has become a mocking enemy of sorts – something totally counter to the spirit of yoga.  With wheel, I’d erected an insurmountable barrier, and felt my inability to get there was symbolic of the fundamental damage that my cancer fight had done to me – and that for all of the rocks climbed and half marathons run, there was a way in which I would never be able to fully reclaim my body, or even all of myself, from this disease.

When I brought my frustrations to my teacher’s attention, and in the process shared the condensed version of my cancer story, she responded with characteristic openness and generosity, and sent me several long notes with ideas about how to approach the pose and where the issues might be in my body.  During the course of the week, as her emails and ideas rolled in, I’d set myself up on the floor, and study what was going on with my body – were my hands flat on the ground?  Where was I feeling constriction?  Was I lifting too much with my arms and not enough with my legs?  I’d assess, and then shoot off another note with my findings.  Suddenly, the monster became approachable, as we worked on solving this puzzle together.

I headed to class last Friday morning excited, curious to see what I could do with all of this new information.  Toward the end of class, after vigorous vinyasa work, my teacher, who customarily ends practice with a series of backbends culminating in wheel, shared with the entire class some of the tips and suggestions we’d been exchanging over email.  She demonstrated the pose using blocks under her hands, and in my mind’s eye, things began to seem possible.  She invited the entire class, filled with many people who have an established practice with wheel, to consider thinking about the pose in light of these suggestions.

I took my two blocks and pushed them against the wall.  I lay on my back, and flipped my palms onto the blocks.  Then, somehow, without the dread that had filled my mind and heart every other time I’d approached the pose, I extended my arms, and lifted my booty and my back off the ground, and found myself staring at the studio’s brick wall.  How was this happening?  My teacher approached.  “That’s gorgeous, “ she told me.  “You’re doing it.”  Then it became real; I was up, in wheel.  I felt myself begin to shake.  “Come down when you’re ready,” she said.

I lowered myself to the ground.  “You did it!” she said again.  “How do you feel?”

The swelling in my chest rose to my throat, then my eyes, and tears ran quietly down my cheeks.  “OK,” I said, gulping air, trying to contain a sob.  I felt a hand on my shoulder.  “That was amazing,” she said.

We moved into shavasana, and more tears came, as I suddenly felt myself back in the moment of my diagnosis.  Outside the studio walls was the dark and chill of late fall, the time of year when cancer visited its wrath upon me.  This momentous anniversary, five whole years, the fear I still hold in my heart, the worry that I won’t stay here for my son – all of it was loosed by this pose.  I swallowed hard, and realized what had been unhooked when I lifted my heart to the sky.  No wonder, then, that I had allowed wheel to feel so impossible for so long.  My body knew something my mind did not, and was trying to protect me from that persistent hurt.  So much of my survival has been about reclaiming and proving my strength, both physical and psychic.  But part of survival is a pain that never leaves, but rather lingers, waiting for release.

These moments of surrender need not be feared.





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In an ironic twist, the morning that Hurricane Sandy began pounding the East Coast, I was scheduled for my regular oncology check-up, my first exam and round of blood work since my recurrence scare over the summer.  Only three months have passed since a colposcopy yielded negative biopsy results and I was able to exhale fully after a nervous July; logically, I have no reason to worry.  Then again, the occasion of a check-up is always reason to worry.

But on Sunday evening, my anxiety about my PAP test and CA125 was quickly eclipsed by anxiety about the approaching storm, which threatened the entire Eastern seaboard, with a particular eye on my home state of New Jersey.  The Monday morning forecast remained murky, and I tried to convince myself I’d be able to make it to West Philly and back before the brunt of the storm hit.  But as news of schools and courts closing and public transit shutdowns spread, it became clear that there was no way I could safely travel even the ten-plus miles to Penn.  I’d have to hunker down at home with hubby, son and pets, and reschedule my check-up.

I left a message with my oncologist’s answering service late Sunday night; we woke in the morning to the first stirrings of whipping wind and pelting rain.  First thing, I made a failed attempt to reschedule my appointment, but by the time I got through to the schedulers, they were preparing to close the practice for the day in anticipation of the worsening conditions.  I’d need to wait until Wednesday, when I could talk directly to my doctor’s scheduler, who could try to squeeze me in sooner.

Beach Haven, NJ, September 15, 2012

For the first part of that surreal Monday, as the coastline 50 miles from my front door was ravaged and the streets of our beloved Long Beach Island flooded, I perseverated on the need to reschedule my appointment, to make sure that my three-month check-up (“the scare” had put me back on a three-month cycle, after what seemed an eternity of enjoying 6 month intervals between visits) occurred within this tight little window of time.  A day or a week too late, I felt, and some malignancy would have a chance to take root in some dark corner of my body, and that would be it.  For a long time, I wondered what my life would be like if my cancer had been caught earlier; what part of my nightmare would I have been spared?  And so I still take comfort in the rigor and regularity of my surveillance schedule, and tell myself that even in the event that something suspicious does emerge, my doctors and I will have the upper hand.  Disrupting my regimen, so entrenched over the last five years, felt like Russian roulette.

But as the news of the impact of Sandy’s wrath grew increasingly grim, my obsession changed – from my postponed checkup to the freakish destruction, occurring, it seemed, all around me.  Paranoid fantasies were quickly hatched – of the roof being torn off our house, water rising all the way to our first floor, the enormous tree in our back deck snapping in half and crushing us all.  One way or the other – be it cancer recurrence or hurricane – the end felt near.

My husband urged me to breathe deeply and enjoy the extra time we were having together with our son, whose obliviousness to the situation and delight in having both of his parents to play with was a welcome balm to my frayed nerves.  Eventually, I did just that.  We made cookies, and played and laughed together, and by early evening, realizing that we’d survived the entire day without losing power or being crushed by falling trees, I was in fact able to breathe more easily.

After dinner, with Earl peacefully asleep, I turned to social media outlets for updates on the storm’s progress.  Wind and rain continued to batter our house, but there was little water in the basement, and though the lights flickered intermittently, our power was in tact.   We were, strangely, fine, when so much of our state was being destroyed.  I started seeing pictures of Long Beach Island, where we were married in 2003, and my heart nearly stopped.  All the talk during the day had been of Atlantic City, where the storm made landfall.  But just to the north of Atlantic City, “our island,” sight of so many lazy summer weekends as well as our wedding (which was marked by its own storm) was all but obliterated.  After a day of shattered nerves, it was almost more than my heart could bear.

Beach Haven, NJ, October 29, 2012

As I obsessively checked Twitter for updates on LBI (and New York City, whose condition also horrified me, but whose resilience and resources assure me that she will be just fine), I came across this tweet, from New York Times writer David Carr: We are all powerless as a general rule, Sandy is just an acute reminder.”  Yes, I wanted to scream.  Yes, yes, yes.

The mind-blowing scale of Sandy and the devastation she has caused leave us all humbled.  But what terrifies us most, I think, is that she teaches us the same lesson that cancer taught me five years ago: something terrible is happening, and there is nothing you can do to stop it.

But it can’t end there.  Because something terrible happens, and then you keep going.  You cry and rage, and your heart breaks, but you keep going.  You rebuild yourself, from the inside out.  You learn to walk and run again; you learn to laugh bigger and louder, more raucously.  You learn to be hopeful again.

Something terrible has happened.  But we must keep going.

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our island, at last

Summer’s final act has brought unexpected joy, and a chance to reflect.

One day last week, it dawned on me: summer is ending, and Earl hasn’t seen the ocean.  I realized further: we hadn’t visited Long Beach Island since before my cancer diagnosis almost five years ago.  The place was calling to me.  It was past time for a visit, no matter how brief.

We made our first trip to LBI completely by accident, probably in the late ‘90’s, a few years after we met.  We wanted a weekend at the beach; why not LBI?  We settled on Beach Haven as our destination, and it immediately became Our Spot.  On one of our first summer weekends there, we discovered that my father’s family had connections to the island, and that my great-great grandfather had owned a home there in the early 20th Century.  Strange coincidence, perhaps, but in hindsight, it made sense, given the way the place got its hooks into me.

In 2003, we were married on the island.  The wedding planning and the day itself were notable for numerous near-catastrophes and violent weather.  But when the storms on the night of our so-called rehearsal dinner had cleared, we were left, the evening of our wedding, with lightening skies, a gorgeous sunset, and memories for a lifetime.

strolling to the bay at our wedding reception

We went back to Beach Haven the next two summers after our wedding, but as a married couple, and with the hope of starting a family burning strong in us both, being there started to feel different.  Suddenly, it seemed, we were adults playing at carefree adolescence.  We were surrounded with people our own age, perhaps even younger, with children of their own.  We talked about what it would be like to come to the island one day with our kids; we didn’t for a minute realize how long it would take for that dream to come true.

But maybe I did.  Here in the midst of this month of ovarian cancer awareness, I am reflecting on my symptoms, all the things that were telling me that something was wrong, for all that time.  Looking back on the months and years leading up to my diagnosis, I wonder if maybe I did know how things were about the change, that life as I knew it was about to end.

A year or so after our last visit to Beach Haven, I was diagnosed with Stage III ovarian cancer.  All dreams of summer weekends at the shore with our children were put on hold  – indefinitely, if not forever.

It’s hard to know why, in all the summers since I finished treatment, we hadn’t returned to LBI.  Perhaps it would trigger too many powerful feelings of loss.  In my bitterest moments after diagnosis, I would think back to our wedding day, the hope and joy that overflowed there, and then think about how cancer had ravaged our dreams, my body.  The heartbreak was more than I could bear.  It was easier, I suppose, to stay away from the place that symbolized everything our life was supposed to be.

Our first summer with our son would mark our return to the island.  With limited time and money, an extended visit was not in the cards.  But our new home on the Jersey side of the Delaware affords us the luxury of little more than an hour’s car ride to the ocean.  So I announced with solemn purpose one evening last week:  I want to take Earl to the ocean, to LBI.  It’s important.

My husband works extremely hard at his job; he treasures his lazy weekend days.  Extended car travel with our 8 month old can be a gamble; scream-fests are always a risk.  But he knows that I work extremely hard, too, and when I pressed my desire to spend a precious weekend day at Our Spot, he got it.

The day could not have been more perfect.  Cloudless blue sky, brilliant sun, cool breeze.  We lunched at one of our favorite spots on Bay Road.  We strolled along Centre Street, past the bed and breakfast where our parents and aunts and uncles stayed and where we had our rehearsal dinner in a driving rainstorm.  We took a quick spin past the restaurant where we had our reception, all the while narrating for Earl the meaning of each spot.

Our time on the beach was pure bliss – Earl’s reaction to the crashing waves and endless water was priceless.  We stopped and rested along a jetty, where Earl took his bottle while gazing out across the watery horizon.  He put his little toes in the sand and squirmed with delight.  Finally, it was happening. – this dream, made real.

tootsies in the atlantic ocean

We ended our day at Barnegat Lighthouse; we climbed 217 steps (me with Earl strapped to my chest) and took in the panoramic views of the bay and the ocean.  The wind blew hard in our faces, but at a hundred and seventy-two feet in the air, my soul soared.

It was a day of magic, one that called up so much of the journey that has brought us to this place of dreams finally realized.

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holding it all

Life can be extreme.  Our fears can consume us; joy can make us feel like our hearts will burst.  Holding it all, simultaneously, as I was made to do recently, can seem nothing short of defying emotional gravity.

There are these moments, surprisingly rare – but perhaps more often for those of us who have lived with cancer – when we are asked to absorb difficult and ambiguous realities, like an abnormal test result, while at the same time celebrating something amazing, like the adoption of a child.  The tumult of the past few weeks – muted by vigorous, daily running and yoga, and nightly cocktail hour – was not fully revealed until the storm of uncertainty had passed.  That Other Shoe never quite dropped; or if it did, it had turned into a nice soft bunny slipper and landed with a harmless “poof.”  In my ultimate relief, I realized how hard I had been working to maintain my psychic equilibrium, and just how scared I had been.

As I wrote previously, my abnormal Pap test results from June were nothing inherently alarming.  My doctor told me directly, “This is not an emergency.”  But when Life After Cancer has consisted of nothing but smooth sailing, even the slightest glitch can feel seismic.

Thanks to the timing of our son’s adoption finalization bash, and an extended visit from my family, I had plenty to distract me from perseverating over my impending colposcopy.  The party, ten days ago, was a huge success, and only served to solidify the reality of our new life as parents, and the wonder of our Early Bird.  We were truly left with our hearts bursting, knowing that Earl is surrounded by so much love.

With my Early Bird, at his Big Bash

But what does one do when the party is over, and a trip to the oncologist looms?  Each morning, I rose before dawn to hit the pavement or take refuge at the yoga studio.  Part of this was about keeping my composure during a long stretch with house-guests; likely an even bigger part of it was about reminding (or convincing) myself that I am strong and healthy, that disease is not brewing within me.   I even logged a quick morning run the day of my scope.  Along my route, I held my head high and pumped my arms, smiling at the other runners I encountered.  I was determined to take this feeling of strength with me, right into the stirrups.

Those who’ve been down this road, who’ve been faced with murky medical findings in cancer’s aftermath, know that there inevitably comes a point when the fight becomes too much.  You have to let go, and let in the fear.  For me, it happened  – not surprisingly – at the moment my doctor entered the exam room.  My doctor’s job is to keep me healthy physically, not to tend to my emotional needs, so I did my standard routine of nodding and “OK-ing” as she went through her spiel, including telling me that she’d referred me for a CT scan.  As I listened, dutifully, distractedly, the terror rose in my chest like a tidal wave.  I kept fighting to beat it back, but once my feet were up and the magnifying lenses were trained between my legs, all the ujjayi breath in the world wasn’t going to help me.

Now doesn't that look like fun?

The physical discomfort of the scope may have been the last straw; my breath caught, and the tears started coming.  The same nurse who has always hovered silently during my regular pelvic exams – while my doctor and I engage in idle chatter – reached over and grabbed my hand.  My doctor muttered instructions as she continued with the scope; I continued to cry as quietly as I could, hanging on to the nurse’s hand.  At one point, I did hear my doctor say, “Well, I don’t see anything…everything looks normal.”  But those words of comfort seemed too late, too little, and too remote.  I was miles away, deep in my fear.  And in the grip of that fear, cancer was back.

When the procedure was over, tears still streamed down my face.  I sat up at the end of the exam table, and the nurse handed me tissues.  My doctor’s eyes were level with my own.  She may have touched my shoulder.  She repeated that there were no visible signs of abnormalities during the colposcopy, and explained, matter-of-factly, that it would take about a week for the biopsy results to come back.  She also told me that she wanted me to return in three months, rather than the usual six, for a repeat Pap test.  That news, almost more than anything that had come before, made me feel I’d lost my fight.  Suddenly it seemed that the state of blissful but controlled denial in which I’d dwelt since entering remission four years ago had come to and end.  Once again, I was a cancer patient.

I don’t even remember my doctor leaving the room.  I was left with the nurse, who asked if I was off from work for the day.  I sputtered something about how I’d recently left my job to be with my son, and for some reason felt compelled to explain that we’d adopted a baby in January.  In that moment, nothing made sense.  How could I, with a black hole where my reproductive organs were supposed to be, have a child?  How could I, the ticking cancer time bomb, be a parent to my son?

As my mind reeled, the nurse handed me a maxi-pad (when was the last time I’d used one of those?) and told me to bring pictures of Earl the next time I came in.

In the familiar cold of the hospital bathroom – where so much psychic heavy lifting had occurred for me over the years – I fumbled with my contact lens that had washed out of my eye as I cried.  I stuffed the drape sheet into the trash and put on my skirt.   Thoughts of my husband and son gathered around the edges of my rattled mind.  I had to pull it together.  I took some deep breaths, and told myself, “It’s time to get back to your strength.”

Mercifully, I waited only 24 hours for my biopsy results.  As Earl and I drove home from our mom-baby yoga class yesterday, my phone rang.  The bright sunlight streaming through the windshield kept me from seeing the incoming number.  I picked it up, and heard the voice of an unfamiliar doctor from my primary care office.  He explained that he’d received the biopsy result from Dr. Chu’s exam, and everything was normal.  He’d thought I’d want to know.

I pulled over to finish the conversation.  The doctor reviewed the plan for the CT scan, and asked if there was anything else he could do for me.  I thanked him profusely for sharing the news, and hung up.  The world seemed instantly brighter.  My heart literally felt like it was lifting out of my chest, toward the sun.  “Earl,” I said, “let’s go celebrate.”

Breathing again, feeling hope and optimism return to their place of centrality, I was able to appreciate how truly terrified I had been.  Beneath all of the effort, the diligent fight to remain on an even-keel, there’d been a steady drumbeat of morbid thoughts, telling me that this illusion of health and wellness was just that – a mirage, and it was over.  I would never escape cancer.

There, perhaps, is the hardest lesson from this, my first post-treatment health scare.  Fate has dealt me wonky genes, and if I want to live a long life, and be around to raise my son, I must accept that my reality is one of persistent screenings, scopes and scans.  The poking, the prodding, the occasional ambiguous – or perhaps not-so-ambiguous test result – is inevitable.  Such is my lot.

It remains to be seen if I will become any more adapt at holding it all – the bliss of being a mother to my incredible son, along side the fear of cancer returning and devouring this beautiful family we have finally created.  But I am determined to keep trying,




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the other shoe

We survivors possess many unique skills.  Chief among them may be our ability to consciously deny our persistent, nagging fear of The Other Shoe Dropping.  It’s essential, if we want to keep on living in any meaningful, joyful way.

Most people, at some point, likely entertain thoughts like this:  “I could get hit by a bus tomorrow.  Might as well live for the moment.”

As survivors, the bus has come and gone.  We’ve been flattened.  We’re peeling ourselves off the pavement, clawing and scraping our way forward, but we’re constantly looking over our shoulders, if only on the sly.  We know that we have to keep moving, but fear fights to pull us back.

The specter of The Other Shoe Dropping, for me, becomes most vivid and terrifying in moments of profound bliss, usually apropos of nothing in particular.  Recently, though, the fear took on a specificity I haven’t felt since the moment of my original diagnosis nearly five years ago.

My six-month check-ups with my oncologist have become yawningly routine at this point.  Hello!  How are you?  You look fabulous.  I’m sorry: my hands are really cold. Little bit of pressure…a lot of pressure.  OK, you can sit up.  We’ll have your test results within two weeks.  Don’t forget to stop at the lab for your blood work on your way out.  See you in six months.

No muss, no fuss.  Invariably, within a few days, I get a call telling me that my CA125 is normal.  In another few days, I get another call telling me my PAP test is negative.  No matter how many times I get these calls, my heart always skips a bit when I see the hospital number on my phone, and a huge smile creeps across my face when I get the good news.

After my most recent check-up, at the end of June, the CA125 call came the very next day.  Undetectable; normal.  Words I never tire of hearing, and news I always happily share with my friends and family.

A week later, the second call came.  As usual, it was my oncologist’s nurse.  “Oh, hi,” she began, the same sunny tone as always present in her voice.  “So, your PAP test showed some low-grade dysplasia, and Dr. Chu wants you to come in for a colposcopy, which I know you’ve had before…”

My mind racing, I immediately interrupted her.  “Um, actually, no, I haven’t.”  I flashed back to the hysterical conversations I had with this same nurse during treatment, as I begged and pleaded with her to please have my doctor prescribe me something for my plummeting mood.  Something, please, to stop me from crying all day, every day.

“Oh well,” she continued.  “It’s just an office procedure…take some Motrin…the doctor wants to take a closer look…maybe a biopsy if she sees anything of concern.”

I was holding my son in my arms; when the phone rang, I was about to put him down for a nap.  As the nurse’s words rang through my head, my heart pounded.  All I wanted to do was cling to Earl, shut my eyes and ears to all of this noise, and go back to the place of bliss where I was the moment before the call came.

Rationally, I should have been able to recognize the “ho-hum” tone in the nurse’s voice.  Rationally, I should have been able to process the fact that my own sister has been dealing with a similar diagnosis on and off for several years, and is very much alive and well, happily raising her own child.  Rationally, I should have recognized that the condition discovered in my PAP test is in no way part of the profile of the genetic mutation that I carry.

Instead, panic slowly seeped in.  I went from “low-grade dysplasia” to my husband raising Earl as a single parent, with me dead in the ground, in a matter of seconds.  I lay Earl down on our bed, and gazed at him, smiling as always, but feeling all of the peace and contentment I have finally come to know as a parent melting away, being replaced with the return of cancer, and the sound of The Other Shoe Dropping.

I’m a parent now.  I cannot afford to stay for even a moment in this kind of hotbed of panic.  Get it together, Emily, I told myself.  I helped myself to a capsule of kava, and after speaking briefly to my husband (who took the news perfectly and appropriately in stride), contacted my sister.  She did a wonderful job of honoring my concern while also assuring me that everything would be fine.  She told me about the procedure, and her understanding of the findings.  Wisely, she urged me to call my doctor and ask to speak to her directly, to allay any lingering concerns.  I did just that, and it made all the difference.

The colposcopy is scheduled for the end of the month; in the mean time, we are about to celebrate the finalization of Earl’s adoption.  I’m running and doing yoga with religious zeal.  I’m stronger than ever, and happier than ever.  I cannot even measure the magnitude of the joy that now burns so brightly from the very core of my being.  I’ve survived the shock of getting my first-ever abnormal test results since completing my cancer treatment four years ago.  Now, it’s back to the essential work of staying present in the magic of this moment.



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