finish line

With cancer, unlike a half marathon, there is no finish line.  There is freedom from active disease, but never from the threat that it may one day return.  So the tests and checkups stand as markers on a road that never ends.

A few weeks ago, the lingering impact of cancer literally intruded on my passion for running, and my attendant attempts to leave the disease in my wake.  On a grey Friday morning, after dropping my son at school, I set out for a ten-mile training run, in preparation for an upcoming half marathon.  I’d no idea there was rain in the forecast, and after a few minutes of running through a light mist, I found myself soaked through.  I had barely covered two miles when it was clear the rain would persist and I would be running these ten miles in a steady downpour.

Still, I was delighted, energized by the intensity of the clear sense of BEING ALIVE.  As is often the case when I find myself running in less than ideal conditions, I was bolstered by my own apparent lunacy, and the knowing looks and smiles I shared with the few souls I passed along my route.  These are the moments when my determination is at its strongest. Then, at mile 6.5, my music suddenly stopped and I realized there was a call coming in on my phone.  I recognized the prefix as a Fox Chase number.  Time for some test results, my brain told me.

I stopped under a tree along the path in Knight Park for some pretense of cover, and crouched over into a tight ball to try and shield my phone from the water running all around me.  On the other end was a nurse from my oncologist’s practice, who reported that my CA125 was “normal,” but at 11, was slightly higher than my previous results.  My doctor wanted me to be tested again in three months, rather than the usual year.

For a moment, anxiety and confusion washed over me, mixing with the rain.  “She thinks it’s probably just lab variation, since you had the blood drawn somewhere you haven’t been before, but she just wants to make sure.”  These words made sense to me, but still the uneasiness clung to me.  I needed to shake it off, like a wet dog.

“Sure,” I said, struggling to hear the voice on the other end of the line as the sound of the rain pounding the leaves above me grew seemingly louder and more persistent.  “I’ll just go to the lab at Penn in September.  But…she doesn’t think this is anything to be concerned about, does she?”

I was grasping for something concrete.  I had three and a half miles left to run, and as my question hung in the air, I wasn’t sure I could go on.

“No, no,” the nurse assured me, and repeated the bit about lab variation.  I could tell she was picking up my anxiety.  She managed to end the conversation in a way that left me reassured, and after resuming my playlist and stashing my phone back in my belt, I continued on, out from the cover of the trees, into the steady rain.

Back on the trail, running along Newton Lake, I felt my feet pounding harder and harder on the pavement, my arms pumping with increased vigor.  “Fuck you, cancer,” I think I said out loud.  Every cell in my body screamed with life.  Look at what I am doing, you stupid disease.  You simply cannot stop me. Don’t even try.

Once I was home, and dry, and the endorphins began to wear off, I understood that there was really nothing so alarming or ominous about the phone call, or what the nurse reported.  My results were normal; my pap test had also been normal.  All was fine.  My doctor, as she has always done over the last eight years, is being hyper-vigilant, making sure that, because of my genetic history, nothing is missed, overlooked, or chanced.  For that, I am ever grateful.

But there was no denying the symbolic reality of that call’s timing.  I could have chosen to ignore it, and returned it later when I was home and dry.  Like any good cancer patient, though, I lack the will power to ignore a call that I know is coming from my medical team. So I answered, and let the reality of my illness interrupt my rhythm, and distract me from the myth of my invincibility.  When I am running, feeling my strongest, it often seems there is nothing I cannot do.  That rain-drenched phone call reminded me of the actual fragility of my condition – or, more generally, our condition.

For it is a condition not particular to me, only seeming so because of my history of illness and the genes that threaten my continued health.  The blessing-curse of my illness burdens me with a heightened awareness of this fragility, but also gives me the freedom to live more fully because of it.

Ironically, running the half marathon became about something completely outside of my never-ending battle with my cancer demons.  Over the past year, as I’ve grown stronger, leaner and more confident as a runner, I’ve watched my speed increase, and my half marathon times improve by a significant margin.  Though I knew the conditions on June 14 would be far less hospitable than those on the day in late March when I ran my fastest 13.1 yet, I still harbored this idea that I would push myself as much as I (safely) could, and see if I could at least minimize the toll the weather would take on my performance.

Once again, the universe had something else in mind.  A friend and fellow Students Run leader had just recently suffered a miscarriage, and though she had not trained to her ability, she was determined to run the half marathon.  Though I couldn’t know her precise sadness and struggle, I related to her determination to push her body as a way of moving through her present adversity, so I encouraged her, and offered to run with her, and bolster her as she needed.  I knew her to be a strong runner, and certainly naturally faster than me, but it was impossible to know exactly how hard this race would be for her.

In soul-crushing heat, we stuck together through the hills of Fairmount Park.  We spent the first few miles with a chatty guy who eventually left us in his wake.  Soon after, I came across a long-lost friend from law school, and he temporarily pulled me away from her. Eventually, we fell into a rhythm of dousing each other at the water stations, and telling stories.  I urged smiles out of her when I saw her start to grimace.

As we ran, I felt that I was holding a fair amount of energy in reserve, even in the preposterous heat.  But it never occurred to me to leave her side, and after the first few miles, I completely let go of the idea of making the race about me, or my time.  This was running with a totally different purpose, and it made me feel happier and lighter than I ever had on a course.

The final mile of included a satanic hill, at Lansdowne Avenue, that anyone who runs races in Philadelphia knows and likely despises.  I ran as steadily as I could up the hill, and passed countless people walking.  At the top, I stopped and waited for my friend, and when I saw her coming over the rise, her face set with determination, I felt a lump in my throat and tears begin to well in my eyes.  So many times, I have felt myself as the one running through adversity, or to prove something.  This day, though, I saw those years and miles of struggle in my friend, and I felt the power not only of what I was doing to pull her along, but also the incredible strength she showed in fighting through her own pain.

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a different kind of PR

A few minutes later, we crossed the finish line together, holding hands, smiling and triumphant.  And in a moment of wonder, I realized that the greatest feeling of accomplishment I’d ever felt crossing a finish line came when I let go of myself, and lent love and energy to another soul in need.

Posted in Life After Cancer, Philadelphia, rain, running | Leave a comment

the music will get you through

There are those rare moments that shake us out from under the spell of our routine, the seeming mundanity of every day existence.  The sameness, the confusion, the seeming lack of clarity about what, exactly, we are doing, or what our past might mean, what our future might hold.  Sometimes “now” becomes this loaded, explosive place, where everything makes sense, or at least converges on itself.

The past 48 hours have been such a time, an opening, a channel through which life’s mystery has been free to flow, vigorous and all-consuming.  Sunday morning (our twelfth wedding anniversary) began innocently enough, as I woke early for a 5K race with my dear Students Run Philly Style team.  This group has energized me to no end.  Over the past year, through mentoring middle and high school runners, my own relationship to running has been transformed in profound and unexpected ways.  I’m supposed to be “helping” these kids, but in actuality, it’s been a lot of the other way around.

So I met up with our sweet team, and pounded out a quick 3.1 miles through air thick with humidity.  I started the race with two acquaintances, both of whom are pregnant.  At first, I fought to participate in the conversation, but as these two lovely, excited young women chatted on, I soon realized how invisible I felt in the context of their shared experience.

I’ve been a parent now for three and a half years.  I have no real desire to have more children.  The life my husband and I have built since our son arrived has felt right in so many ways.  But the lingering sadness of my cancer, and what it stole from me, can visit most unexpectedly, and there it was, out of nowhere on this hot Sunday morning, driving me to push myself faster across the finish line.  As if to show my illness everything I can still do, how strong I have become.  Stronger, actually, than I ever would have been, had cancer not come calling.

These moments, these constrictions in my heart that are the purest and most inescapable legacy of my cancer experience, have become so rare.  And so they knock me sideways, maybe harder now than ever before, when they were more chronic, more a matter of course.

The looming shadow of my impending annual checkup with my oncologist may have made me extra susceptible that morning.  As one of my survivor friends tweeted at me, “Nothing screams Monday morning like a visit to the oncologist.”  And so, yesterday morning, coincidentally (or perhaps not) in the wake of the previous day’s emotional shake-up, I hauled myself up to Fox Chase Cancer Center for the perfunctory ten-minute office visit with the doctor who saved my life almost eight years ago.  At this point, I no longer have any conscious anxiety about these appointments.  Nevertheless, they are like small earthquakes, disrupting the ground beneath my feet, reminding me that all is uncertainty.

A few hours later, I packed up my family and drove to New York City, where my husband and I were to spend the evening celebrating our anniversary with a night of music.  This rare night out, though, turned into something more mystical than I ever could have expected.  For the universe, it seems, pushing circumstances and feelings into a kind of beautiful collision, was intent on something totally beyond my control.

Larry Campbell and Teresa Williams, as any fan of Bob Dylan and The Band knows, make incredible music together.  They are torchbearers for the legacy of my beloved Levon Helm.  The room where they played last night became the site of something inarticulable. Levon, whose struggle with cancer was coming to and end just as the most recent chapter of my own life was beginning, was present in that room.  I don’t think I have ever felt anything so powerfully.  The last song of the night, “Chest Fever,” was a searing homage, and I found myself, after entirely too much wine, with tears falling fast and furious down my cheeks through the song’s entirety.

The show ended, the tables cleared.  Mike and I hugged, and I couldn’t stop crying.  Wine will do some strange things to my emotional state, but this was more than that.  “I don’t know what happens to people when they die,” I sputtered to Mike as he smiled at me and held me close.  “But I could feel Levon here, he was present tonight.”  To my relief, it was clear my husband knew exactly what I meant.  There is a reason we have been together for eighteen years, married for twelve.  Music brought us together. Cancer tried to tear us apart.  There are some connections that can never be broken.

I feigned composure as we waited in line to greet Larry and Teresa after the show. Thankfully, where I am bashful, Mike is a talker.  We finally came up to the table to shake hands, and he quickly and succinctly hit the highlights – about the overlapping timeframe of my illness with Levon’s, how the music he made with them has lifted us up.  I think I started crying again, as quietly as I could.  Larry and Teresa’s faces immediately lit up with warmth and kindness.  She held my hand while Mike talked; Larry folded me in his giant bear arms. “The music will get you through,” Teresa said, and hugged me with a benevolence and compassion that made me never want to let her go.  “I’ve had my struggles…I know…”

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With Larry and Teresa, after the magic, puffy from crying and too much wine

These gracious and gifted strangers expressed gratitude for the story and sentiments we shared with them, and wished us well.  And I stumbled out into the strangely cool air, feeling like I had just come close to something which some people might call god.  Not god with a capital “G,” not an omniscience.  But the feeling that we are all connected, if we can just figure out how to get to the place where that connection is unearthed.

Last night, after a soul-stirring few days that seemed defined largely by the legacy of cancer, music blew through a room in Lower Manhattan, the living and the dead joined hands, and the circle was made complete.

Posted in fellow fighters, Infertility, Life After Cancer, music, running | Leave a comment

THIS; NOW

When I was diagnosed with cancer seven years ago, I inevitably became preoccupied with my own mortality.  The vibrant immediacy of the life I had been living before the moment of my diagnosis was eclipsed by the terrifying reality that my own end could be drawing near.  There was the bleakness, the fear that marked the actual period of my illness – the grueling treatment, followed by an at times even more punishing recovery.  And then, for months, even years following, there was this evolving melancholy that I could never quite shake, but which eventually transformed itself into a kind of blissed-out gratitude.  I was still here.  The years kept rolling by, I kept getting stronger, healthier and more alive than I’d ever been before my illness.  I finally became a parent.  Things felt bright and possible, life like an extended high.  Everything was sweet.

Recently, though, the brightness has felt dimmed.  Friends from First Descents camps are dying; I learn, through the mixed blessing of social media, that friends of friends are dying. And now, my mother-in-law, who has been living with MS for a quarter century, has been in a months-long cruel decline, and her prognosis seems mysterious and guarded.  Our world feels like a deathwatch, though it wouldn’t be surprising if she bounced back yet again and lived for years to come.  Through all this, we are raising our wild and wonderful three year old son, and so are feeling life’s extremes.  We are grappling with the mystery and sadness and confusion of what feels like a life in its final throes, while at the same time nurturing this young new spirit.  Trying to balance these poles of human experience has left my head spinning.

What is to be done?  As with my own illness, watching my mother-in-law’s struggles has caused life to feel like it is slowing down.  Time has become mutable and elastic, each day its own minefield of terrible possibilities.  There is the tendency to hold one’s breath, to wait for something that feels inevitable.  But in truth, what is most urgent is that we keep living our own lives, with as much purity of joy as we can manage.  Never is the necessity of living in the moment, of embracing what is present, more potent than when life’s precariousness threatens to swallow you whole.  We cannot ever know what lies ahead. THIS is all there is.

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Perhaps, then, there is something to be learned from the beautiful and excruciating challenges of raising a child.  For a three year old, there is only NOW.  Whenever we mention something that will happen in the future – a babysitter coming, going to a playground – our son will immediately ask, “NOW?”  We are constantly trying to explain the distinction between the future – “SOON,” “LATER” – and the present: NOW.  For our boy, there is only NOW.

Those of us battling the bleak realities of death and suffering could stand to benefit from adopting this more myopic perspective.  What is anxiety, after all, other than fear of an unknown future?  I have deep concern for my mother-in-law’s health, and I am fearful that she will not recover from her current crisis.  But right now, I am here, writing these words. Breathing in and out, sending energy into the atmosphere.  Each night for the past few days, when I have closed my eyes to sleep, I have held this thought for my mother-in-law: May she find the strength she needs, or the peace to let go.  It is impossible to know which way things will turn.  Acceptance of either outcome is the place of peace I will continue to seek.  The gift of this moment is one I will strive to treasure.

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psychic whiplash (or, “what is life?”)

A few weeks ago, I learned that one of my friends is pregnant with her second child.  This friend went through years of heartache before having her first child, and the road to her second pregnancy hasn’t been without its trials.  Her daughter is close in age to my son, and the four of us have achieved the rare dynamic of both adults and kids being well matched.  I am so thankful that she has come in to my life.

Before l learned of her pregnancy, I’d quietly come to the decision that I did not want to have any more children.  My husband and I have had many conversations about the idea of expanding our family, and have usually ended with the question remaining open.  Earl is still very young (though we, perhaps, are not) and most of the time it’s felt like there’s no rush to make a final decision about what we want to do.

But on days when I find myself feeling intellectually (and sometimes spiritually) restless, or when my son and I are butting heads, I tend to come back to a recurring theme:  I don’t want to put my own life on hold again, as I feel I would be with the addition of another child.  As we begin shopping for pre-schools, I’m finally able to begin contemplating a daily routine that allows more space for my own self and work (even if I don’t end up back at a “straight job.”)  When I think about taking care of a new baby, I imagine the clock being reset, starting the whole, all-consuming process of parenting all over again.  And in those imaginings, I see my own self disappearing.  There may be a strain of selfishness to my thought process, but I also know that my ability to maintain a strong and fulfilled sense of my own identity is essential to my continuing to be a joyful (and effective) parent, and it’s difficult to imagine doing that with the added burdens and responsibilities of raising another child.

In classic, Life After Cancer fashion, though, the news of my friend’s pregnancy stirred up all kinds of anger and sadness, taking me right back to the moment when I lost my fertility in the first instance.  It took almost two years after finishing cancer treatment and processing the loss of being unable to bear my own child before I was ready to approach the reality of adoption.  It was a slow and painful road to get to a place of acceptance.  Now, six and a half years since I lost my fertility, I am the mother of the most amazing little boy in the world, and I’m happy and secure in my decision to raise him as an only child.

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But cancer’s psychic whiplash can be a bewildering thing.  A few days after learning of my friend’s pregnancy, I found myself in tears while struggling to get my toddler to eat lunch.  But the tears weren’t out of frustration, as they sometimes are.  They were of renewed sadness for what I have lost.  Never mind that I don’t actually want to have another child.  Never mind that if I did, we could hunker down and go through the motions with our amazing adoption agency.  The unfortunate fact is that, just as was the case during all those years I was surrounded by pregnant coworkers, the news of my friend’s pregnancy brought up the long-dormant trauma which cancer wrought.  This is the seemingly endless, recurring curse of young adult cancer.  You must continually face the long-term effects of the disease, and constantly be reminded of how it robbed you of the life you’d once thought you would have.  For me, this has related particularly to decisions and choices about career and family.  But whatever form the lasting impact takes, it’s a painful echo that can reverberate with renewed force at unexpected moments.

Still, forces in the universe often have a way of balancing each other out, and last weekend I found myself on a five-mile run across the Ben Franklin Bridge, along side a delightful and spirited sixteen-year-old girl.  We were chatting easily, and at one point I asked if she had any brothers and sisters.  She said she had a 40-year-old half-brother from her father’s earlier relationship, but that she was, for all intents and purposes, an “only child.”  It was a perfect, clear morning, with light breeze at our backs as we crossed the bridge high above the Delaware, the city stretched out before us.  We talked about the benefits of being an only child, all of the extra love and attention she’s received.  We laughed about the challenges of having siblings.  This young woman, this proud and curious old soul, allowed me to hook into something very essential about my decisions, even my world-view.  Listening to her unexpected wisdom, I felt strong and shored up, and cancer felt far away.  “Every day,” she offered, almost off-hand, “I wake up and say, ‘What is life?’”  I laughed, and told her that question would probably never stop asserting itself.  For some of us, the answer may have a lot to do with reconciling the hurt and trauma of the past with the reality of Now.  But for all of us, it persists.

Posted in Infertility, Life After Cancer, Philadelphia, running | Tagged , , , , , , | 2 Comments

cancer ate my feminism (or did it?)

Last month, I had the good fortune to finally meet a remarkable fellow cancer fighter (and writer) with whom I’ve had a years-long virtual relationship.   As has happened many times before, when these virtual connections become “real,” I was struck with the sense that we’d met before, that we shared something inarticulable   This is how cancer binds us to one another.

As we exchanged messages in anticipation of our meeting, I made a passing comment about how it felt in some ways that cancer had eaten my feminism.  I heard the thought forming in my mind, and tossed the words off-handedly into an email that touched on some of my mixed feelings about being a stay-at-home mom, but as I saw them in front of me, I knew they had some weight.  My friend’s reply bore that out, and she said she was eager to hear more about what, exactly, that meant.

When we finally sat down for lunch, and talked for a breezy two and a half hours that positively flew by, we never did get to the deeper meaning behind my (not so) innocent remark.  But the sentiment has stuck with me, and I’m still trying to figure out why I said it, and what it means.

Despite having been a women’s studies minor in college (and writing my thesis in the discipline), I have never taken the time to create my own definition of “feminism.”  But once I made the decision to quit my job as an attorney and start working as a “full-time mother” (a term I despise, as if women who work outside the home are “part-time mothers”)  – I began to think a lot about how my life-long identification as a feminist now felt.  In truth, it felt quite awkward.  But why?

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I’ve gravitated toward this notion of feminism as giving women the opportunity to CHOOSE what their life will look like – to have autonomy, and freedom, to do and be whatever they want.  Under this view, the “choice” to leave the paid work force is just as valid as the choice to continue working outside the home – as it should be.  (Setting aside, for the time being, that many women do not possess this choice in the first place, for any number of socio-economic reasons.)  So when I blithely say that “cancer ate my feminism,” I suppose what I mean is that my cancer, and what it did to my psyche – giving rise to this hyper-awareness of the fragility of life – AND my body – rendering me unable to bear my own child, and therefore have some measure of control of the “timing” of becoming a parent – deprived me of making a truly independent choice about what I wanted my life as a mother to look like.

My feminism, in a theoretical sense, remains firmly in tact.  But from a certain perspective, cancer painted me into a corner, and left me feeling like I had no option but to throw myself as fully as possible into my job as a mother.  Yes, it’s true that my professional life was an unfulfilling dead-end, but it’s also true that when the disease struck, I was hoping to change jobs, and if it hadn’t struck, I might have been able to change my professional situation in such a way that when I did finally become a parent, I might have been more inclined to continue working as an attorney.  (Might, might might…) Instead, cancer came along, and everything else – my professional development and my plans for becoming a parent included – was swept aside.  It all came down to the fight.

None of this means that I regret my decision to spend the last two years at home with my incredible son, or to leave a frustrating job.  From another angle, cancer, rather than eating my feminism, has given me the opportunity to do something fantastic for our family, to have time and space to do things that I wouldn’t otherwise have been able to do if I was caught between full-time parenting and full-time paid work (which is the reality for “working parents,” let’s face it.)  Maybe then, I am just once again experiencing the long, shifting shadows which cancer continues to cast over the life I now inhabit.  At the outset of my cancer journey, it never occurred to me that my personal politics and identity would be impacted so profoundly.  The intervening years, however, have taught me that cancer leaves no facet of the self untouched.

Posted in Family, fellow fighters, politics, Work | Tagged , | 1 Comment

hard work

This long, punishing winter has driven many of those around me to something close to madness.  People are starved for warmth and light and fresh air and green things growing all around them.  This cold and snow and ice, this inability to allow our bodies to move and feel freedom in the space of the outdoors, it is enough already.  It’s not just the toddlers among us, with their boundless energy and need for a constantly changing environment, who are feeling the walls closing in at this point.  It is everyone.

That being said, I thank this winter of our discontent for its part in the formula which created a recent powerful explosion of emotions.  A few weeks ago, for consecutive days, I found myself slumped in a heap, weeping, as I tried to manage my son’s moods, runny nose and seemingly endless dissatisfaction with every single thing I did.  For nearly two years, being a mom has felt like this euphoric ride, something I was blessed to finally experience after the nightmare of cancer and everything it left in its wake.   But during that bleak stretch, after days of no sleep, things began to crack, and I began to feel a frustration with my son (and myself) that caught me totally by surprise.  The guilt that grows out of feeling anger toward my child calls up so much that has come before, most particularly the hardship which my husband and I endured before we were able to become parents.  I feel I am not permitted to feel the hard emotions that come with being a parent, simply because I yearned for this so long, and because in the end, nothing is harder than cancer.  Where is my endless strength and resilience, my bottomless reservoir of patience and gratitude?  For a painful, prolonged moment, it certainly felt like it was all gone, perhaps buried under a snowdrift, or a sheet of ice.   It felt instead like the choice I have made, to devote myself to the full-time work of raising my son, has turned me into a desperate, angry shadow of the strong, clear-headed and loving mother I had thought I was.

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Sleep deprivation can cause all manner of irrational thoughts to go through one’s mind, and a few good nights rest thankfully helped right my psychic ship.  But there is something essential in what I have learned recently that feels true, regardless of how much sleep I have gotten, or being able to blow off steam with friends.  Not long ago, I was discussing the hard parts of parenting a toddler with a friend.  My friend hasn’t had cancer, but she did go through a seven year ordeal of infertility treatments and lost pregnancies before she finally had her daughter.  She, like me, is parenting a wonderful toddler who often drives her to the brink of madness.  And also like me, she is wracked with guilt whenever she finds herself locked in battle mode with her child.  We both feel, it seems, that we are not permitted to acknowledge how hard our jobs as mothers can be, when we longed for our children for years, and spent so much time not knowing if we were ever going to have the chance to parent at all.   And so we are caught.

The truth of parenting, with or without the added complications of cancer or infertility  (or both), is that it is the most wonderful and difficult thing we can do.  As I’ve said here before, cancer (at least temporarily) robbed me of the ability to embrace and accept ambiguity, or gray areas.  Cancer was wretched, the worst, the hardest and scariest thing of all.  It swallowed me whole, or so it seemed at the height of its torment, and when the darkness was all-consuming, it never dawned on me that this disease might ultimately yield some of the most meaningful relationships and connections I’ve ever known, or might allow me to open my mind and heart to the world in a way I was never able to before my illness.  Cancer was bad, and life, once cancer was ”over,” would magically become good again.

It’s no secret, to those of us who have been down this road, that cancer never really ends, no matter how many years of survivor status we can claim.  Its legacy is ever-lasting, and the trick is in managing the aftershock.  And while life “after” cancer is for the most part sweeter and happier than the world I inhabited while in the throes of treatment, there is nothing unambiguously easy or perfect about it.  And so it goes, with the reality of parenting my amazing son.  Naively, I expected to be rewarded with some kind of “free ride” as a parent, because, HEY, we’d already been through so much with cancer that we were going to be blessed with an “easy baby” who would grow magically into an “easy toddler” who of course would ultimately become a perfectly happy, well-adjusted teenager/adult.  Instead, what I now face is the same set of challenges which every parent endures, just with the added sense of gratitude that surviving cancer has bestowed on me.  After enduring what felt like the end of everything, I was finally blessed with a new beginning – which of course brings with it a whole new array of challenges.  But the next time I’m nose to nose with my screaming toddler after endless nights with no sleep, I’ll do my best to remember to be thankful for the chance to be here, doing this hard work, at all.

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cancer: then, now, always

Last month, an acquaintance from high school emailed me to report that she’d just been diagnosed with cancer.  I was momentarily floored, but unfortunately, the reality of young adult cancer is so much a part of my life that the initial shock quickly faded.  Sometimes, I’m more amazed at the number of people I know who haven’t had cancer yet.  Sometimes, it feels like this dread disease is coming for us all.

My high school acquaintance shared her story in brief, broad strokes, and I was gripped with the familiar sense of wanting to DO something for her, to change the past for her, or to smash something in shared outrage and sadness.  Her story, and those of others like her, like me, are endless.  We may regain our health, and perhaps find greater happiness than we knew before our illness, but there is no denying the tragedy that we’ve all endured; all is not necessarily well that ends well.  There is simply no regaining time and innocence lost.

What may emerge from that darkness, though, is the particular light that comes from people with a shared history of adversity lifting each other up.  When my acquaintance related that she’d leaned heavily on things I have written here, the tension at the heart of so much of what it means to be a survivor cinched tight around me – this sadness that she needs whatever it is I can offer, tempered with gratitude that somehow my own experience with cancer has helped relieve someone else’s burden, no matter how slightly.  Please, Universe, the survivor often pleads:  let there be some meaning in all of this madness.  Let my experience guide someone else who is forced along this tortured path.  In the end, the miracles of medicine aside, all we have is each other.

My journey out from the darkest recesses of what cancer wrought has been filled, mercifully, with remarkable human beings with whom I share an essential reality: the pain and fear that inevitably accompany a cancer diagnosis.  Though time and distance and death itself have tested and altered these relationships, they formed a powerful foundation for the person I’ve become since my illness.  When a new member joins our ranks, I feel all of these connections anew.  My hope for this person from my past, then, is that she can know the unique comfort of other survivors.

past present future

Still, when voices from my “cancer past” emerge, (as happened last week, in an event seemingly unrelated to the email from the high school friend), I feel a certain destabilization of my “new normal” – which, six years out from diagnosis, doesn’t feel so new anymore.  Most of the time, cancer feels old, a million years ago.  There is simply no room for it any more, not when I am trying to be a mother and a good partner and also find time to make space for my own self-care.  But when an email appears from an old virtual cancer friend , it feels once again very much at the center of my psychic universe. For in truth, it is always at the center.  When it feels otherwise, it’s simply because of daily distractions, the business of living.  Whenever I’m presented with an opportunity to look inward, and consider the aspects of my history that are etched most deeply, I realize there is nothing larger and more significant than the fact of my illness.

Managing as a survivor – at least for me – means fighting in some sense to deny the centrality of cancer in my life.  For if you can’t ever really get away from it, if you can’t just “forget” for a moment that you were ever sick, or temporarily erase the memories of that fateful meeting with your oncologist, or the moment you were wheeled into the OR for your surgery – how are you supposed to fully inhabit a life among the living?  When I recall the days of my diagnosis and treatment, I feel the acute vertigo of staring over the abyss – coming head to head with death, in some profoundly raw and unexpected way.  It’s been six years, and I still feel it.  Not constantly, but vividly, in particular when one of these voices from the past emerges, and calls it all up.  That’s how I know it’s all still right there, just below the skin.  If only those memories could be extracted from my consciousness, removed like the cancer itself.  The disease is gone, but the impact is forever. So maybe, then, it’s never really gone at all.

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reclaiming complexity

Many months ago, around the time of my son’s first birthday, I was prompted by a friend to reflect on my decision to leave my job as a child advocate attorney to become a stay-at-home mother.  I shared my thoughts with my friend, but stuffed them in the “draft” file here at See Emily Play.  Eight months later, these themes have crept up again, and it feels right to excavate my earlier thoughts.  While a large part of me feels that what I am grappling with is merely the same “having it all” conundrum that plagues all working parents (at least women), another part of me –the part that wants to scream “ENOUGH ALREADY WITH THIS CANCER SHIT!” – knows that the nature of my struggle with these issues is tainted by the never-ending aftershocks of my illness.

And so it was last week that I found myself once again scrutinizing and second-guessing the decisions I have made about my own life path since becoming a mother, and feeling that those decisions were essentially taken out of my hands by my cancer.  This unexpected inner turmoil was prompted by something seemingly wonderful.  One of my dearest friends, a co-worker from my former job, has finally found new work after a protracted period professional misery (to which I can obviously relate, having lived through it myself.)  My friend is also a mother of a young child just the same age as my son.  For the past year-plus, she has been doing the thing I deemed myself unable to do – she has worked full-time while raising a fantastic daughter.  In truth, I look at what she does, managing work and family, and I am totally amazed.

While I left an unhappy job situation to work as a stay-at-home mom, my friend has left to begin a new professional adventure, a prospect that for me, at this point, seems remote if not downright impossible.  How, I found myself wondering after a celebratory lunch with my friend and another former co-worker, will I ever be able to reclaim my identity as a lawyer, a professional, someone with an active intellect?

tricky and beautiful

tricky and beautiful

I will never know what kind of decisions I would have made if I hadn’t had cancer, if our son hadn’t come to us through adoption after years of waiting to start our family.  But in rare moments, like the one I experienced briefly last week, it feels like cancer painted me into a corner – in this realm as in many others – and robbed me of the chance to make choices and build a life as I truly wanted it to look.   More insidiously, it seems, cancer has deprived me of the chance to recognize and accept the on-going complexity of being a parent while wanting to maintain a distinct sense of self.  As survivors, we’re conditioned to be endlessly, unquestioningly grateful for the gift of Simply Being here.  Compound that with the blessings that finally arrived in the form of our phenomenal son, and there is scant space in which to navigate the rocky waters of a life that includes raising a family while maintaining one’s autonomy.

After cancer, it feels like some kind of betrayal to be anything less than ecstatic about the life I now inhabit.  Honestly, life now is a thousand times fuller, happier and more beautiful than anything I could have ever imagined, before OR after cancer.  (Life Before Cancer consisting of a largely undefined blur.)  But fullness, happiness and beauty are not the antitheses of complexity, or challenge, or even difficulty.  So, rather than betraying the forces and fortune for which I am indeed truly grateful, I hope to do a better job of honoring them by embracing complexity, rather than denying it.

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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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LUSH LIFE

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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