equilibrium restored, or brief notes on being a survivor

Posted on September 8, 2010 by Emily

This just in: sometimes, life after cancer completely sucks.

I try not to spend a whole lot of time here feeling sorry for myself, or bitching about how hard my life has been since my diagnosis.  The truth is, most of the time I feel great – physically and emotionally.  Still there are those (thankfully) rare occasions when I want to scream and break things. There are times when I cry.  Hard.

Yesterday was one of those days.  The details don’t much matter.  Let’s just say that to my mind, there are few things more painful for a survivor than feeling unsupported, feeling that people you expect to “have your back” don’t quite recognize the shit storm that life after cancer can be.

But thank the gods for great husbands, running shoes and iPods.  After an unplanned evening run, my equilibrium was restored and I managed to wake up this morning and fight another day.

Life is funny, though, and no sooner did I return from my long day in court this afternoon than I  learned that one of my most beloved fellow warriors was, just last night, in the grip of her own version of the survivor’s shit storm.  It simultaneously breaks and warms my heart:  I recognize the commonality of our struggles, and I want nothing more than to hug her and let her know that I really, truly understand, to relieve some of her suffering. But at the same time, I feel the way in which our shared adversity actually gives me strength.

Little more than twenty-four hours ago, it felt like everything that I have endeavored to do over the course of my recovery has been an illusion.  No matter how many miles I log on my bike or in my sneaks, I will never be able to bear a child.  No matter how many rocks I climb, I will never escape my genetic mutation.  No matter how many hours I sit and write and reflect, no matter how many people on Facebook “like” my posts, I will never be able to avoid going for GI scopes and check-ups and blood work.  It will never end, and it will never change.

Yesterday, a creeping blackness descended; by day’s end, my heart hurt.  Other than my valiant husband at my side, I felt completely alone.  Most days, I want to in some way forget about my cancer.  Yesterday, in my despair, what I really needed was a phalanx of love and support surrounding me.  I needed to know that the most important people in my life understand in some fundamental way how fucking hard and painful so much of the last two-plus years has been.

The last thing I want is for my fellow fighters to be suffering, falling prey to the emotional undertow that is an inevitable part of survivorship.  For all of them, I want nothing but love and strength and positivity.  But I am not so naive.  Instead, what buoys me, at the end of the day, and in those moments of darkness, is feeling everything that binds us together and allows us to keep moving forward, in spite of it all.

Posted in fellow fighters, Life After Cancer, running | Tagged , , , , , , , , , , , , , , , , | 3 Comments

my left foot (or, what’s compulsive after cancer?)

Posted on September 6, 2010 by Emily

Today started with barking, dog wrestling and a power outage.  We just spent ten days taking care of our friends’ Pomapoo, who loved to begin each day with a vigorous yet playful attack on our own aging basset hound.  High-pitched barking, the works.  Fine, whatever.  You get used to it.  People can get used to just about anything.  Isn’t that one of the main lessons of cancer?

Our old gray lady

So I was out of bed at 7 AM on a holiday – also fine, as it was destined to be another insanely perfect day.  Sunny, breezy, low humidity.  Perfect weather, in fact, for doing just about anything outside.  Saturday I ran 5.18 miles; yesterday Mike and I rode forty with a friend, training for the MS 150 in a few weeks.  On days like these, I actually delight in being up and moving around as early as possible – more of the day to enjoy.

I prepared a pot of coffee with chicory to brew, and a few minutes later, the water still percolating, there came a tremendous explosion outside.  First I thought gunshots (that’s what 15 years of city living will do to you) then quickly realized that the coffee maker had shut off.  I heard wires sizzling nearby.  Blown transformer.  Quick call to PSE&G to alert them to the situation, then I wondered, what to do on this odd morning, other than sit around and worry about everything in the fridge going bad?

After a few minutes of huddling and snuggling under the covers, enjoying the nascent fall chill in the air, I said to Mike, “I was thinking about going for a run.”  My thought process:  I’m pumped up from my earlier run and ride this weekend, the weather is perfect, and pacing around the house waiting for the power to come back on isn’t going to do me any good.

Mike’s thought?  “You’re a bit compulsive with the working out.”

Am I?

I bristled; we went back and forth – he retracting his comment (which he had apparently also made to my friend on our ride yesterday), me insisting I wasn’t angry, even though I was.  Telling him he was entitled to his opinion, even though he was wrong.  “You don’t know from compulsive,” I told him, thinking of the people I know who obsessively run and spin and swim and compete in triathlons and trail rides and runs and on and on.  In the end, I said simply, “It’s not just about working out obsessively.  It’s about how it makes me feel, mentally and physically, it’s about my life recovering from cancer, surviving.  It’s all of that.”

I don’t really know that I can ever adequately explain the need I have to regularly, religiously, push and challenge my body, why I feel the need to pound the pavement when I’ve had consecutive strenuous workouts on the two previous days.  The process, the effect, just isn’t the same, unless you know what it’s like to have every last ounce of energy and will drained out of you.  If you have, you know how precious the feeling of invigoration and rejuvenation is, how much you treasure each miraculous thing your body is still able to do.

But there’s more to it.  There’s more, because even after everything, I am still able.  I still have the capacity to push myself.  I have been almost entirely rehabilitated.  I may even be stronger than I have ever been.  But not everyone is so lucky.  Not everyone whose life has been capsized by cancer is fortunate enough to get to the place I am now.  Some people fight briefly and fiercely, and die.  Some people fight long and hard, and are left with limitations that render them a shadow of their former selves.  Some people are pushing themselves to their new-found limits, all the while wondering: how many weeks, months, years do I have left?

This morning, just before the transformer blew out around the corner, I was checking my (scanty) Twitter feed, and came across this article, courtesy of one of my ovarian sisters, Sarah.  Like the woman in the story she shared, Sarah is fighting fiercely while raising two children.  Her treatment is constantly changing, and her prognosis is…?  Honestly, almost three years after my own diagnosis, I still don’t know what “prognosis” really means, or what my own is.  Maybe that’s part of the reason a cancer diagnosis can feel like a one-way ticket down the rabbit hole.

I didn’t have children when I was diagnosed, and whenever I hear stories of people who are fighting cancer while raising a family, I am astounded.  And I am also thankful.  While I grieve for the biological children I will never have, I don’t think I would have had the strength to manage my illness while trying to take care of my kids.

So the truth is, every time I get on my bike, or run out my front door, I am doing it not just for me, but for everyone else who is still fighting, or who fought and lost.  It’s not just about me; it’s about all of us.

Our adoption application arrived in the mail on Friday.  We’re really going to do this. We’re ready.  The paperwork is endless; some of the questions, disquieting.

There’s a medical section, of course, and my doctor has to answer this question:  “Does patient have normal life expectancy?”  There are only two suggested answers:  YES or NO.  Black, white.  No shades of gray to account for the on-going surveillance I receive because of my genetic mutation (how’s that for a mixed blessing?);  the fact that my grandmother lived to be 93;  that my mother is pushing 70 after multiple cancer diagnoses.  Honestly, I have no idea what my doctor’s answer will be.

Just when I start to feel like cancer is in the rearview mirror, ancient history, I am confronted by something like a question about my life expectancy, and suddenly it’s front and center once again.

Mums the word.

I ended up not running today.  Instead, I potted some mums and did a few hours of other yard work – weed whacking, mowing, watering.  I came in for lunch, took off my shoes, and felt this intermittent buzzing in my left foot.  The neuropathy which plagued me for so long after treatment has almost completely resolved, but my left foot remains quirky. There is periodic joint pain emanating from a few places along my insole, and today, this nervy buzzing.  I described it to Mike: “It feels like a phone is ringing in my foot.”  At four or five second intervals, the buzz kicks in.  It’s been buzzing all day, and like with a muscle twitch in my eye, I’ve said to myself, “Well, I guess it’s just going to be this way forever.”

Goddamn foot

It won’t be.  Like the other discomfort in my extremities, residual from chemo, it will resolve.  But like so many other reminders, it will creep back once in awhile.  In the end, I will never completely escape the memories.

Posted in adoption, cycling, Death, fellow fighters, Life After Cancer, running | Tagged , , , , , , , , , , , , , , , , , | 4 Comments

the invisible hand of first descents

Posted on August 29, 2010 by Emily

Some things are so obvious, we risk taking them for granted.  Some things underpin so much of who we are, what we do, that it seems unnecessary, or redundant, to spend time reflecting on their significance.  At the end of a weekend when I feel so acutely the challenges I routinely put before myself, how I conquer them, and when I am looking ahead to some terrifying and exhilarating unknowns, I need to stop and state the obvious.

First Descents has become like oxygen, this completely essential part of my existence. Every day, regardless of what else is going on in my life, there is at least a moment or two where I am communicating with my family from camps in Jackson and Moab; working on the FD blog that I am so honored to have been asked to maintain; or just mulling over memories or images or dreams of future encounters with other FD’ers.  (Today, on a long run, I was gripped by a powerful image of me, Stiletto and Caesar rocking the house at an FD fundraiser, belting out wicked three part harmony on Fleetwood Mac and Journey covers.)

It dawned on me on my run this morning that I am now training for two major athletic events over the next two months.  After a two year hiatus (f!@$ you very much, cancer), I am finally saddling up again for a two-day, 150 mile bike ride for the National MS Society.  And a few weeks ago, after learning about the First Descents 10th Anniversary festivities happening in Denver in October, I decided, somewhat hastily, that I would attempt to run on a relay team in the Rock ‘n’ Roll Marathon there.  Never mind that running at that altitude is an utterly foreign challenge for me.  (I recall gasping painfully on my short runs in Jackson last summer.)  It’s First Descents.  I need to be there.  And if there’s one thing I’ve learned from FD, it’s that I can do anything that I set my mind (and body) to.

At our favorite resting point - the Atco Post Office, August 2010

Yesterday, I rode 40 miles.  Running has greatly improved my endurance and over-all physical conditioning, but it’s still kind of a bitch to get up and run the morning after a decent-sized training ride.  But today, as I woke up, I decided that not only was I going to run, but that I was going to push myself a good bit beyond my average weekly morning distance.  I have set a goal for myself, a distance I will achieve before heading to Denver to run my leg of the marathon, and I just decided – BAM, like that – that I would start today. Why not?

This might not sound like much.  But every single time I saddle up, or lace up, and feel the wind and the sun on me, the sweat running into my eyes (as it did today, on the simmering first morning of what’s expected to be another week-long heatwave), I think of climbing the stairs in our old house during chemo, the way my heart would race, leaving me as short of breath as if I’d just run a marathon.  Two years ago, the challenge of getting my dog around the block, or carrying laundry up from the basement, was as profound as anything I am doing now.  There was so little of me left then, that the smallest task seemed as comparatively monumental as any training ride or run seems to me today.

This afternoon, Mike and I took my mother-in-law out for a belated birthday lunch, and we spent a good bit of time talking about where we are in the adoption process.  We told her that tomorrow we are going for a one-on-one meeting with the director of the agency we are likely going to use.  At one point, I reminded her that the process is destined to be long, and fraught with all kinds of emotional peril.  There is no saying how or when we will be parents.  She responded by saying, “I know that. I am just so happy that you’re ready to do this now, because it means that you are well enough, that you’re OK. ”

The process of getting to the place of being ready to actively pursue adoption – to get on this new roller-coaster and start dealing with paperwork and aggravation and uncertainty – has been long, and incremental.  There has been no over-night transformation from the devastated, heartbroken survivor I was in the immediate aftermath of treatment to the person I am now – calm, realistic, content, blessed with a strength and resilience that I believe can only be gained from enduring a struggle like facing and overcoming cancer.

The fact is, every rock climbed, every stride along the pavement, every push up an incline in the saddle, has been an essential part of getting me to the place where I am ready to move into the next phase of my life – one where I am not defined solely by my survivorship.  But where my survivorship informs the countless other dimensions of my identity – those already known, and those yet to be.

On the rock in Jackson, WY - September, 2009

I trace so much of this evolution back to First Descents.  I can look back to Jackson, exactly a year ago this week, and see the bend in the road, the place where my journey back to life was forever and irrevocably transformed.  It’s a miraculous thing to have this kind of invisible hand operating on me, on my soul.  It’s something that I think all of us who have been fortunate enough to be a part of this magical community understand. Tonight, I just want to make sure I don’t take it for granted.

Scaling the Devil's Butt Crack; Moab, UT, April 2010

Posted in adoption, cycling, First Descents, Life After Cancer, running | Tagged , , , , , , , , , , , , , , , , , | 1 Comment

heroes: roll-call

Posted on August 22, 2010 by Emily

In my own stillness today, it seems right to offer a round-up of a few of the fiercest fighters around me.  I often think about this ad-hoc community of young adult survivors that I am so blessed to be a part of  and how our shared strength and commitment to living life as fully as possible serves as a kind of never-ending kick in the pants.  On those (thankfully) rare moments when I feel like I don’t have the energy to continue pushing myself, I think about the heroes that surround me.  We aren’t in competition, but we are connected in this essential way.  Thanks to cancer, people I may never meet in person serve as powerful catalysts in the on-going saga of my own rehabilitation.

As the thunder rolls overhead, and the rains finally begin to fall, I’d like you to introduce you to just a few of them.

HOLLY

Holly, age 33, lives in Knoxville, TN and has just completed her treatment for ovarian cancer.  Holly and I were put in contact through our mutual friend (Melissa, aka Giggles), who I had the pleasure of attending First Descents camp with in Moab, UT this past April.  Shortly after returning from camp, Giggles connected us.  Holly was in the midst of treatment and having a hard time finding other young women to talk to about her experience with ovarian cancer.  I was more than happy to do whatever I could for Holly, and over the past few months we have exchanged virtual support and encouragement.

Holly wrapped up treatment earlier this month.  I always enjoyed checking in with her updates on her Caring Bridge site, especially seeing the numbered signs she’d hold aloft, counting down to her final infusion.  When I read her post about her last day of treatment, I was fairly stunned.  She described a surprise-party, a delicious meal (food?  right after treatment?!?) and teal-clad friends.  Her ability to be in the moment, to experience the full measure of what it means to survive treatment and take that first step toward the rest of her life genuinely astounded me.  That in and of itself constitutes an act of heroism.  (Suffice to say that my last day of treatment looked…well, different.)

A few days ago, I took note of Holly’s Facebook status and saw that she was already showing signs of being ready to “take on the world.”  It’s an impulse that I had hoped would seize me the moment I finished chemo, but the reality ended up being something quite different.  For me, the immediate aftermath of treatment was marked by torrents of rage and confusion, and later, extreme sadness.  For me, recovery was a rocky, winding road, and while it’s impossible to predict the future, I have a strong sense that Holly is well on her way to a post-cancer life defined by the same positivity and grace that she has exhibited throughout her journey thus far.

JENNIE

In the fall of 2008, not long after I finished my own treatment, I was matched through Imerman Angels with Jennie, then age 32.  Jennie’s diagnosis and treatment were almost identical to my own, and as fate would have it, we shared the same genetic mutation. From our first contact, Jennie blew me away me with her energy and determination. Following Jennie on her blog, I learned that she was a woman of incredible will who flat-out refused to let cancer slow her down.  I was constantly amazed at the level of activity she sustained throughout her treatment.  Sometimes, it seemed like Jennie, mid-treatment, had her shit more together than I did mine, post-treatment.  I often wondered if I was even able to be a useful support to her, as she seemed to have a life that was so full of friends and family who were buoying her along.

Jennie finished her treatment in the fall of 2009, and experienced some of the expected emotional hiccups over the winter, but with the coming of Spring came the resurgence of Jennie’s tireless energy.  A few weeks ago, I saw that she is now in the process of training for a triathlon to celebrate her one year anniversary of finishing treatment.  Again, looking back to my own condition (emotional and physical) one year out, I am awestruck when I see what Jennie is setting out to do.  While I recognize that every person reacts differently to treatment, and every person has a different journey back to wellness, there is simply no denying the sheer awesomeness of what Jennie has set out to do.  And to top it all off, she’s raising funds for the Ovarian Cancer Research Fund.

It’s another wonderful, cancer-themed ironic twist of fate that as I sit here today, Jennie, who I was matched with to provide support and guidance during her cancer fight, now inspires me.

CAROLINE (aka FRIDGE)

Unlike Holly and Jennie, Caroline (aka Fridge) hasn’t had ovarian cancer, and is fourteen years my junior.  I have also been lucky enough to spend not one but two First Descents camps with Fridge in the past year.  I think of her as the younger sister I never had.

When I consider Fridge, who was treated for acute lymphoblastic leukemia in 2007, I think not only about what she has endured as far as her treatment and recovery, but I think about what it must have been like for her to experience a cancer diagnosis and everything that followed while in college, just on the verge of trying to figure out what her life might look like.  I know what it’s like to go through chemo, lose your hair, feel sick all the time, blah blah blah.  And I know what it’s like to be a wide-eyed, idealistic college kid.  What I can’t imagine, though, is what it’s like to have those two realities collide head-on.

Fridge in Moab, 4/10

Fridge would probably be the first to tell you that it sucked, big time.  But to know Fridge now is to see a young woman of incredible talents (she writes! she sings! she plays guitar! she takes AMAZING photos!) with – yes, you heard me – her whole life ahead of her.

As if that weren’t enough, Caroline is in the process of training for the Chicago marathon (and fundraising for the Leukemia and Lymphoma Society) this coming October.  Every so often, she’ll write about her runs, and it’s like an incredible shot of adrenaline.  Over the year that I have known Fridge, I have watched her grow from a lovely, tentative young soul into a fierce, triumphant warrior, and I can’t wait to see all of the amazing things she’s destined to achieve.

There are countless other heroes around me whose spunk and sass and fearlessness help me get out of bed each day, but today, in my rare moment of quiet, I am particularly in love with these three.  I hope I’ve given you just the smallest taste of the light and magic they each possess.

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enjoy the silence

Posted on August 22, 2010 by Emily

It is an admittedly irrational fear of mine that if I rest for too long, or indulge in too much stillness, cancer will somehow have won.

Ridiculous, I know.  I am three months shy of the third anniversary of my diagnosis.  To say that I am thriving would be be an understatement.  The ironic reality is that I lead a more active and fulfilling life than I did before cancer; joy and contentment are driving forces, where fear and restlessness were once the order of the day.

Still, it feels odd to find myself puttering around the house on a humid, over-cast day, waiting for rain and indulging in a kind of restfulness that is increasingly rare.  (That is, if running endless loads of laundry and vacuuming in anticipation of my parents’ arrival tomorrow can be considered “restful.”)  A few of this weekend’s activities were cancelled at the last minute, so I have found myself with long expanses of free time, time that I have today decided to devote to catching up on work for the First Descents blog, unanswered emails, and reflecting here.

Hitting the road

Yesterday, I rode 40 miles on my own.  Mike was to join me, but wasn’t quite himself after the previous evening’s revels, so I decided to power on solo.  I always prefer to cycle with a companion – unlike running, which I generally prefer alone – but I went out anyway.  The first few miles felt arduous, my legs heavy and my breathing labored. Eventually, though, I warmed up, and soon found myself pedaling with vigor and intensity.  I rode hard, and fast at stretches, and at the end of the 40 miles I was completely exhilarated – even ready for more.

Aside from passing the occasional fellow rider and offering a “Good morning,” as we passed each other, I rode in the stillness and silence that I so adore.  I whistled off and on, or sang a few bars of a random song (“Allentown,” “Sweet Caroline”), or said “Hey, Moo Cow” as I rode past a pasture populated with goats and bovines.  But mostly, it was quiet in my mind, and I arrived back at the house after three hours on the road with a cleansed spirit and an invigorated body.

There was to be another ride today, but I wanted company this time, and Mike was weary from battling the summer cold that I gave him a few days ago.  I considered going for a run, but when I stepped out with the dog at 8 AM and felt the humidity envelop me, the soreness in my shoulders from yesterday’s ride, and the lingering vestiges of my own cold, I decided that today would be a day of rest.

After cancer drained me of all life and energy, after spending days, weeks, months prostrate and poured out, the feeling of energy and wellness that comes from a strenuous bike ride or a difficult run is like a drug, a fix that goes right to the very core of my being. I’m addicted to it, and it’s a clear act of will to take a day and say to myself, “Rest.  Be.”

What I sometimes forget is that in choosing to be dormant for a day, I am not reverting to the throes of weakness and sloth that so defined me during my illness.  There is a stillness that is voluntary and restorative, that serves as a necessary antidote to the high -energy bliss that fills most of my days.

With today’s quiet, I am gathering strength, compounding the excitement and enthusiasm that will propel me out of bed tomorrow morning just before first light, and send me out the door to pound the pavement and fuel my soul for the week ahead.

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the readiness is all

Posted on August 8, 2010 by Emily

Desperate to resume “living” as quickly as possible after finishing chemotherapy in June of 2008, I returned to work – part-time, and in a limited capacity, but returned nonetheless – just three short weeks after my last treatment.  In hindsight, it was an insane decision, and I certainly see now how my transition back to reality might have been made easier by giving myself more time to “heal” – emotionally and physically.  But I also understand now that rehabilitation following diagnosis, treatment and reaching the promised land called Remission is a long, convoluted process that occurs in fits and starts, and that if I had waited until I “felt like myself” before rejoining the living, I might, to this very day, still be stumbling around in the dark, trying to learn how to live again.

So, I chose to dive back in, (bald) head first.  Those awkward first weeks and months were documented only sporadically, but trust me when I say there were many, many ugly moments, tears and feuds a fairly regular occurrence in our home well into the first part of 2009.

The day I returned to work - July 7, 2008

Tonight, I find myself thinking back to those days for a very particular reason.  I recall so vividly a particular day when – sitting in my office, my feet and legs buzzing from peripheral neuropathy, dressed in the new work clothes I had to buy to fit my emaciated frame – I decided to do a little internet research on adoption.  I was barely weeks out of treatment, and my mind was often racing, searching for ways to paper over the cracks which cancer left in my life, and no disruption was more profound than being robbed of my fertility.

I turned first to the website of an adoption organization run by a woman who used to work in the child welfare system and who many of my colleagues knew personally.  I printed out all of the information on their process, and I recall distinctly standing at the communal printer, pulling off the pages, my eyes scanning the litany of requirements, all of the details involved.  By instinct, my eyes landed on the section about medical history, and my heart immediately started racing.  I felt the blood rush to my face, the buzzing in my feet intensify.  The familiar vertigo of anxiety gripped me.

It wasn’t rocket science:  clearly, it was entirely too soon to be contemplating trying to build a family.  At that point, it was hard enough to get myself out of bed each morning and make it through half of a work day just sitting in the office – never mind going to court, running to meetings, writing briefs.  Fear and exhaustion still ruled my life.  It was no time to think about trying to be a parent.

Still, it was a natural, understandable impulse.  And it has, predictably, taken months – years, now – of reflection and resurrection to come to a place where I am no longer haunted by the children I will never have, where I am not choked with anger and sadness every time I think about what cancer stole from me.  But instead, to inhabit a place where I feel exuberant, capable and serene.

And so the process is beginning.  Slowly, with a certain amount of trepidation, but primarily with great excitement.  We have attended our first adoption information session, have another scheduled next week, and just yesterday spent a remarkable afternoon with another young couple whose lives were touched by cancer, and who today are celebrating the second birthday of their incredible adopted son.  Hearing their story, and seeing the beautiful family they have created, warmed my heart and sent my mind soaring with possibility.  We have our eyes wide open, and even at this early stage have a fairly clear idea of the hazards and obstacles which await us.  But we are determined, and undetered.

Enjoying a weekend at the shore, July 2010

It’s hard to know exactly when and how we arrived at this place of readiness.  The evolution has been incremental, growing out of endless conversation, oceans of tears and sweat, furious pedaling, angry rock-climbing, relentless pounding of pavement.  Each day, the lessons of cancer sink a little more deeply into the fibers of my being, leaving me changed in a lasting and fundamental way.  Happily, at this moment, the transformation feels profoundly positive, the lessons having left me stronger and wiser.  It is a wisdom I long to impart to a child of my own, and finally, after years of heartache, I believe that I am going to have that chance.

Posted in adoption, Family, Infertility, Life After Cancer | Tagged , , , , , , , , , , , , , , , | 5 Comments

hopeless/heroic

Posted on August 5, 2010 by Emily

Tonight, I would rather be sprawled out on the couch, listening to the Phillies game, eating mango sorbet and spacing out.  It has been, to be blunt, kind of a shit week.  Not in any dramatic, existential way, not in a way of any real deep emotional tumult.  Just in the way of having the frustration and futility of my “day job” shoved in my face.  (This, you see, is my “other job,” my weekend and evening job, when my time is my own and I have the space and freedom to try and add something meaningful to the conversation about Life After Cancer).  This week’s crap-fest has come upon me relentlessly, in the midst of the August doldrums, when it seems like the entire rest of the world is on vacation – enjoying a mid-day margarita on a breezy, bay-side dock somewhere, while I am trapped in an airless courtroom, starting a hearing at 4:30 in the afternoon.  While I am keeping the company of a set of parents who I believe I described earlier this evening as “brain-dead, derelict, drug-addicted and zombified.”  (I think I made up that last word.)  Parents who, over the course of six years couldn’t manage to get their sorry behinds into a drug treatment program, stop trying to kill each other (and landing in jail) every few months, hold a job and just be the parents their four children need them to be.  Never mind the fact that today, the day when the court is finally scheduled to hold a hearing to terminate their parental rights, they decide that their attorney, who has been representing them since day one, isn’t doing her job and therefore they are requesting new counsel.  That is the least of their multitudinous offenses against humanity.  What they have done to their children – through neglect, indifference and a profound and unwavering inability to get their shit together – really ought to be considered a crime.

Today was the second of two consecutive days when I came out of the courthouse well into the evening, feeling a kind of unfocused despair about living in a world where people come to this.  Where poverty and ignorance and inequality produce generation after generation of people who have nothing, and no hope.  But who, really, wants to read about that?

But I had to write tonight, so the preceding paragraphs are your (or my?) penance, and what follows is the reward, I hope.  Or at least a tribute that is long overdue.

On the other end of this day, first thing this morning, even before I’d showered and dressed and had my iced coffee, I came across the latest words from one of my most beloved and remarkable ovarian sisters.  Sarah Sadtler Feather, better known in cancer blog circles as The Carcinista, is a woman who, though I have never met her, inspires me every single day.  With biting humor, penetrating insight and raw emotion, Sarah shares her journey as an ovarian warrior who is coping with her cancer as a chronic illness.  I often get chills as I read her words; I have often felt like I am in her house with her, watching her manage her children, or driving with her to the hospital.  As she has described the arduous ups and downs associated with the clinical trial she is now participating in, I have honestly, at times, felt the physical symptoms she describes.  She talks about her fatigue, how she battles each day, and sometimes I just want to curl up next to her while she lays down for a nap, just to let he know that I am with her.

There are far too many people out there in the world, fighting battles like I fought – young women with ovarian diagnoses, many of whom are facing dwindling options and grim prognoses.  Sarah’s is one remarkable voice in a chorus of angry, vital voices, all of which need to be heard.  I just wanted to take the time tonight to shine a bright light on her, share some of her wisdom and say thank you.

So, Sarah, keep up the fight.  You are heroic, in the truest and most profound sense.  Your courage lifts me up every day, and bolsters my own.

Posted in Life After Cancer, Writing | Tagged , , , , , , , , , , , , | 3 Comments

JUBILATION

Posted on August 1, 2010 by Emily

It may be that my current state of health and wellness – which I feel more acutely and intensely each time I go for a long bike ride (which I did yesterday) or push through  a run when I am not feeling at my best (as I did today) – has heightened my preoccupation with illness.  How people handle it.  How they share it or hide it, embrace it in some reluctant way.  What it means to have your body betray you in an  obvious, tangible way, in a way that robs you of energy, that gets into your head and saps your spirits.  Maybe this all goes right to the essence of what it means to be “alive” in the fullest, most literal sense.

There is a lot of chronic illness around me – my husband, sister-in-law and two dear friends all struggle with chronic GI problems – which have, to varying degrees, taken over their lives at one time or another.  My mother-in-law was diagnosed with Multiple Sclerosis over twenty years ago, and the disease completely transformed her reality, quite literally altered her destiny.

As I watch all of these people struggle with symptoms and flare-ups, as I see how unpredictable a chronic illness can be, how you can wake up each day not knowing how or when your disease will affect you at any given moment, I consider my cancer, my finite period of disability.  Literally:  seven months out of work, collecting that insurance check, and then, a few weeks after finishing treatment, jumping back in and flailing my way through the world of the living, the healthy.  Certainly my recovery was long and difficult – and continues to this day – but now, a little over two years after finishing treatment, I am strong and vibrant, healthier and more alive than I have ever been.  My energy level is robust, I am pain free. I sleep well.  I enjoy eating.  I experience the joys of a platonic, well-formed bowel movement virtually every day.  (Don’t ever – EVER – under-estimate the value of a good BM.)

Yesterday, I left the house before 7 AM to meet a new friend for a long bike-ride.  It was a perfect morning – cool, sunny, no humidity.  We set out intending to ride 42 miles; we ended up doing 55.  I hadn’t ridden in weeks, since the American Cancer Society event, but I felt comfortable and strong in the saddle.  A year’s worth of religious discipline with my running has given me stamina and endurance I never imagined I’d possess – cancer notwithstanding.  A new pair of pedals and shoes seems to have all but eliminated the persistent low-back pain I always used to experience on long-rides (unless, of course, it was related to the grapefruit-sized tumor I was toting around me with for all those years.)  After those 13 extra miles, my legs were burning a bit – appropriately so – but after a nice tall glass of lemonade and some stretching when I got home, I felt like a million bucks.

At about mile 43 of the ride, my companion asked, “Are you getting tired?”

I laughed a bit as we pushed up a small hill.  “Yeah, I’ll admit it.”  My odometer read 11 MPH and my legs felt like lead.

“This is about the distance we thought we’d be finishing,” he said.  Several detours had added the extra mileage, and we’d agreed to try to stretch things out.

“Yeah, it’s OK,” I replied.  “It’s good to push yourself.”

So, in the spirit of pushing myself, this morning I decided to try a run.  The day after a long ride has always been a great excuse to rest, but today I felt a certain determination to see what my body was up for.  This morning was over-cast, but the air was much thicker and more humid than the day before.  Still, at about 8 AM, I laced up and headed out the door.

There was a stiffness in my neck and shoulders from biking, and my body was definitely resisting.  But I soldiered on, not minding my sluggish pace.  It was a test, just to see what I could handle.  I ran a new route, and gauged my mileage along the way – finally coming in just under four miles.  As I walked the last two blocks back to the house, soaked in my own sweat, waiting for my heart rate to slow, I smiled at myself.  I truly didn’t care how ugly or slow my run was.  It was a perfect reminder of why I run – not to be first, or fastest, or to impress people.  I do it for myself, so as not to lose sight of the strength that I gained from the battle for my health.

My husband hasn’t been well lately.  He’s been fighting a new array of symptoms related to his disease, and it’s been a decidedly rough patch.  I watch him struggling with his illness, and I am reminded of the ways in which chemotherapy ravaged my body, and how the violence it did to me seeped into my psyche.  I remember the sense of being poisoned.

Those memories are always there, dormant but very much alive, framing my reality.  It might seem that by dissecting every minute detail of my life as a survivor, in trying to untangle the threads, the stories and images that fill my mind each day, I am engaging in some kind of morbid preoccupation with illness, with disease.  But what I know, and what any survivor will probably tell you, is that the driving force, the motivation for exploring the nuances of life after cancer, is the insatiable desire to live as fully as possible.  It is the opposite of morbid.  It is jubilant and ecstatic.

Posted in cycling, Life After Cancer, running | Tagged , , , , , , | 3 Comments

twice if you’re lucky

Posted on July 25, 2010 by Emily

Tomorrow morning, bright and early, off I go to the Perleman Center for Advanced Medicine to start my day with a pelvic exam and a CA125.  Ah, the joys of life as a stage III ovarian cancer survivor.  It’s four months between check-ups now, and the truth is, an extra month feels like an eternity when you’re talking about visits to your oncologist – almost long enough to forget that life, to a certain extent, is now measured in these medicalized intervals.

But the fact is, it’s been another full and fabulous weekend, and despite the record-breaking heat (which hampers my running and causes some endorphin-deprivation-related grumpiness), I am feeling happy and strong and, as has been the case for many months now, very, very excited.

Cancer has connected me in a palpable way with the forward motion of life, the continuing adventure, and has instilled in me a perpetual sense of the possible.  Before cancer, one of my greatest fears was stagnation, the idea that I was in danger of becoming stuck, my life routinized in such a way that I would never be able to escape the patterns which I had created for myself.  Now, because of my head-on collision with mortality, each day I embrace the notion that the only limits are the ones of my own creation.  I no longer fear those limits; I just consider ways in which I might dismantle and overcome them.

There is the spine-tingling mystery of not knowing what lies ahead, the sense that life is an unchartered path of boundless opportunity, and then there is the comfort of the familiar, the known quantity, the constant.  Somehow, for me, the latter serves to heighten the exhilaration associated with the former.

Last night, for the umpteenth time, I found myself pressed up close to a concert stage, with my husband and my sister at my side, smiling and whooping while one of my favorite musicians, Neil Finn, tore it up with his band Crowded House.  My love of Neil and his uplifting, heartbreakingly beautiful music extends back decades, and is due in large part to my sister’s influence in my early years.  (She had me singing along with Neil’s first band, Split Enz – his brother’s band, really – before I even hit prepubescence.)

The last time Mike and I saw Crowded House was almost exactly three years ago – August, 2007 – on what I now consider the eve of my cancer diagnosis.  It’s an inescapable fact that I recall the events of my life just prior to my diagnosis as unfolding in a kind of slow-motion, dreamlike haze.  The memories are particularly vivid, but obscured by the knowledge of what followed.  As we danced and sang at the House of Blues last night, I recalled the summer night three years ago at the Mann Music Center, and contemplated the way in which my life took such a violent and unexpected turn just a few months later.  The weather that day in August was peculiar – swinging from suffocating heat during the day to unsettled, wind-tossed chill air in the evening, causing fans to rush to purchase sweatshirts at the merchandise tables.  It was, looking back, some kind of metaphor for things to come.

But there I was, last night.  In spite of everything that has happened in the interim, there I was.  Exuberant, full of life, standing for hours, sweating, basking in the singular joy of live music, music that has been a constant current that has always served to both heighten the bliss, as well as provide comfort during hours of darkness.

As we drove home on the Atlantic City Expressway very early this morning, I could not escape the feeling that I have been given a second chance, a second opportunity to try and get things right.  About 20 miles from home, we passed a grizzly accident scene – unmarked emergency vehicles, six or seven police cars, an ambulance, a skeleton of a car, buried in the trees on the side of the road, draped in a white sheet.  An eerie sense of tragedy, of life’s unexpected cruelty, hung in the air for a moment as we drove on.

Sometimes, we are given the opportunity, as life slows down and time stops, as words are uttered that freeze our reality, to consider what is happening, to understand our own transience.  Other times, we are obliterated in the blink of an eye.  We never see the end coming.

The luck associated with my diagnosis, treatment and current remission is something I am still struggling to accept.  Two and a half years ago, whenever someone told me how “lucky” I was – as I contemplated my childlessness, the livid incision in my abdomen, my mortality – I became enraged.  Luck was the exact opposite of what I felt.  Instead, I felt the cruel smack of misfortune.  Today, though, it is finally beginning to make sense.

But you know what it means to me, babe/In the course of a history, hey/It all makes sense to me somehow/And it’s not what it used to be, no/We’re suddenly free to let go/And look what’s happening now

These are times that come/Only once in you’re life/Or twice if you’re lucky

Neil Finn

Posted in Death, Life After Cancer, music | Tagged , , , , , , , , , , | 1 Comment

chocolate shakes and ’80’s pop

Posted on July 16, 2010 by Emily

A wise person once said, “You don’t have to write a thousand words every time you sit down to do a post.”  The same wise person has also said, “One of your great gifts as a writer is how direct your language is.”  So, on a Friday afternoon, as the City of Brotherly Love become the City of Smotherly Love under an ungodly blanket of humidity, let me just say a few things.  Let me be pithy.  Or at least try.

To whomever is listening:  I am really, really tired of working in an office full of pregnant women.  It’s just hard.  It’s hard enough to have a job that constantly exposes me to drug-addicted, mentally ill or otherwise incapacitated people who are having children they cannot care for.  When I learn of yet another pregnancy in my office, it’s like getting punched in the gut.  It’s not even personal: some women I like and respect an enormous amount are starting families, and I am happy for them.  But it sucks for me.  There, I said it.

Some of you may remember, a few months back, me writing about one of my most gruesome cases – an eight month old child who nearly died of starvation at her mother’s own hand, in addition to suffering severe physical abuse.  She and her two and a half year old sister are still in foster care (for some reason, they are just entering a pre-adoptive home this weekend), and the mother is facing criminal charges.

Yesterday, I learned that this mother had another baby on Wednesday.  To top it off, no one knew.  Social workers met with her on Monday, and had no idea she was pregnant.  The baby – four pounds, eight ounces – was born two days later.  When she’s ready for discharge from the hospital, she’ll be my client, too.

Maybe, instead of representing this helpless newborn in dependency court, I should just take her home.

Meanwhile, in other news from the front, today I was in court with another mother who is in a drug-treatment program with her three and four year old children, while her one year old is in the care of her maternal grandmother.  In October, this woman will deliver her fourth child – coincidentally, the same month she is due to finish her in-patient treatment.  Then what?  Transitional housing with four kids under the age of five, while fighting to stay sober.

You tell me what’s wrong with this picture.

Life is cruel.  As Depeche Mode once sang, “I don’t want to start any balsphemous rumors/But I think that god’s got a sick since of humor.”  Obviously.  How else do I – a vibrant, caring, intelligent, big-hearted woman, robbed of my fertililty by cancer – end up in a work place populated with pregnant women while doing this insane job that continually shoves human misery and cosmic injustice in my face?

There is no explanation.  It’s bullshit.  So, I had a chocolate shake at 3 PM, and tonight I will go hear some loud rock and roll music and drink a beer.  Tomorrow, I will pack up the car and drive to the beach with my husband and dog.

Life’s what you make it.

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