speaking out; running hard

Posted on November 7, 2010 by Emily

By all rights, I should be curled up on the couch with Peter Carey’s Parrot and Olivier in America, sipping my Riverhorse Belgian Freeze, breathing deeply and calmly, engaged in some kind of conscious regrouping after a long and eventful weekend.  I got the beer part right, but I can’t seem to keep myself from the keyboard.

Was the weekend “epic?”  You might say so.  How quickly can I convey its meaning?  It’s 5:15 in the evening but feels much later – between turning the clocks back, speaking out and running hard, there’s a risk of coming off the rails quickly, and without warning.

With Kerri Conner and Cathy Bueti after the panel

Yesterday, I had the privilege of sitting on a panel at the inaugural Women’s/Young Adult Cancer Symposium at Fox Chase Cancer Center – not my medical center, but a prestigious institution in a gorgeous setting, staffed with lovely and devoted practitioners.  I shared the panel with two remarkable young women, Kerri Conner and Cathy Bueti, both of whom have transformed their own cancer experiences into books and other amazing charitable and artistic endeavors.  There were things I would recommend that Fox Chase change, and the event definitely felt like a first attempt at something which I hope will become much larger and more powerful in the coming years.  Still, it was exhilarating to have a chance to stand before a group of people and share my journey from cancer patient – medicalized, demoralized – to warrior survivor, and explain the essential role which First Descents has played in my rehabilitation.

In an unexpected turn of events, I went WAY over my allotted time; twenty minutes sounded like an eternity, but once I started talking, I realized how desperately I wanted to share so many seemingly minor details of my experience.  There’s a lesson in that, I guess.  Dr. Mary Daly, the panel moderator, was apparently trying madly to have Mike, seated in the front row, get my attention, which he finally did, waving his program, at which time I sped through my last few slides and offered what must have sounded like a non-sensical string of thoughts about the Denver Marathon relay, connecting with other survivors and blah blah blah…

Who knew I liked to talk so much?

Despite what felt like a somewhat embarrassing and inauspicious end to my talk, I left the day feeling like I had accomplished something meaningful not only for myself, but for some of the women in attendance as well.  In particular, I was moved by the comments of one woman who told me how she was inspired by my story.  She was particularly struck by a slide of me on the rock-face in Moab, fighting my way up what we lovingly called The Devil’s Butt-crack.

“The way I thought of it,” she said, “was that you are up there on the mountain top, looking down at me, saying, “Come on up!  You can do it!  You can make it up here, too!” I was at first quite taken aback by this image of me in a place of exaggerated strength and prominence, “looking down” on other fighters and survivors, but as I looked at this woman – who appeared a good bit older than me – I could see reflected in her eyes the universality of the survivor’s struggle, regardless of age.

No rest for the weary, though, and this morning it was up like a shot (from a night of unspeakably surreal and somewhat unnerving dreams) and off to Campbell’s Field in Camden for the start of the Run the Bridge 10K.  Mike and I ran, along with 4,000 of our closest friends, back and forth across the Ben Franklin Bridge, through the streets of Camden and along the waterfront, 6.2 glorious miles.  I’d crafted a brilliant playlist for the event, and felt strong and invigorated the whole way.  I even shaved some time off of my pace from my 10K leg of the Denver Marathon just a few short weeks ago.  Mike and I crossed the finish line in the outfield back at the baseball park, our hands clasped and raised in triumph.  It may seem a gesture somewhat out of proportion with finishing a mere 10K, but no matter how many races I run, no matter the distance and no matter my pace, I never take for granted the feeling of exhilaration and achievement that comes with crossing that line.  The people watching me may not know my story, but I carry it with me in my heart, with every stride, and it makes every finish that much more meaningful.

While I ran, my mind was very much on my First Descents family members who were a few miles up the road, running in the New York City Marathon.  I thought of Lemondrop and Double-Oh-Seven, and Brad and Ryan, and Beemer’s sister, and I just felt the smile taking over my entire body.  All of us in our own ways, from different places of strength and ability, put one foot in front of the other today, and showed cancer who’s boss.  Good for us.

Posted in First Descents, Life After Cancer, Philadelphia, running | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

no line on the horizon

Posted on October 28, 2010 by Emily

Following my hysterectomy in the early days of winter, 2008, my oncologist presented us with two treatment “options.”  In my haze and numbness, I was largely unable to absorb information; Mike became my eyes and ears, as well as my mouthpiece.  I recall vividly one evening when my doctor called.  I sat on the couch, sitting across from Mike, staring, terrified, while he spoke to her.  I could tell they were discussing statistics, as my doctor conveyed with stark figures the urgent need for me to pursue the “more aggressive” form of treatment.

While Mike listened, with the phone to his ear, I mentally plugged my fingers into mine, chanting, “I can’t hear you…I can’t hear you…” like an obstinate child.  When the conversation ended, I essentially allowed him to tell me that I had no choice – we had to go whole hog on the chemo.  The alternative was unthinkable.  But I never let him tell me my statistical chances of beating my cancer.

I never wanted to know the numbers.  They weren’t going to help me get well.  They were just going to terrify me, perhaps even make it impossible for me to focus on the fight ahead of me.  So it was unto the breach, blind to the statistical reality of the odds which I faced.

Over the course of treatment, and in the months and years that have followed, the elusive “five year survival rate” for ovarian cancer patients with my diagnosis remained a mystery to me.  When “statistics” would come up in the course of discussing the diagnoses of friends and acquaintances, Mike would ask, almost teasingly, “Do you know what yours are?”

“No, and I don’t want to,” I would always say.  File this under “magical thinking,” for it is now clear that my reasoning for refusing to hear the numbers was simple:  don’t tell me, and somehow it won’t be true.

Last night, we hosted my First Descents campmate, Lemondrop, and in the course of our conversation, she mentioned her own statistics.  The number didn’t really register with me – aren’t all statistics bad? – until Mike and I were riding the train to work this morning.  He asked again:  “You know what yours are?”  And before I had a chance to give my stock reply, he spit it out:  “In the 30’s.”  Meaning, for those unfamiliar with how this works, there is over a 60% chance that I will be dead within five years of my diagnosis.

Hearing this figure was the moment at which the floor was supposed to drop out beneath me, sending me spiraling into an abyss of panic.  But it didn’t happen like that.  No Grim Reaper walked onto the PATCO train from the platform at 8th and Market.  I just looked Mike squarely in the eye and said, “Well, I’m 3/5 of the way there and I have no intention of changing directions at this point.”

Not long after arriving at work, I read the latest post from Sarah, my ovarian sister who has been battling since 2006.  Her words hit me hard, as they often do.  She has arrived at a new place in her own fight, a place of serenity and acceptance that is both breathtaking and heartbreaking to see.

For the past four-and-a-half years, we’ve been sailing along through open seas, scanning the horizon with our telescopes, peering from the crow’s nest at the edge of the world, looking for signs of what’s to come. For that time, there’s been no sign of anything, just flat horizon. Some days we’ve had calm seas, and picnics on the deck; other days have been stormy and I’ve stayed below decks. We’ve just kept sailing, waiting and watching.

Now, there’s land on the horizon. Distant, hazy, indistinct, but it’s there. And that’s where we’re sailing. Don’t know how long it’s going to take us to get there, nor whether we’ll change course and sail somewhere else first, but there’s no doubt of my destination.

Sarah is a mother of two, with a brave and devoted husband.  She is smart and funny and thoughtful, and a true realist.  In her words today, she conveyed recognition of the reality of her situation, while at the same time demonstrating her unrelenting will to fight on, to take the drugs and the accompanying beat-down, to take it all on in the hopes of reversing or postponing the progress of her disease.  She has reached a point, it seems, where she is facing her situation with eyes wide open, and arms outstretched, embracing everything for which she has to be thankful.

I only wish that I had some of Sarah’s courage.  In comparison, I feel like I have kept my head in the sand, my eyes squeezed shut tight, my fingers in my ears, refusing to even hear about my five-year survival rate.  Maybe now, three years out, (hopefully) plowing ahead uneventfully to the magic five-year finish line, I am able to muster a bit of retroactive courage, and absorb the reality of a 30% survival rate.  Maybe now I will be better able to handle the shock when my doctor fills out the medical forms for our adoption application and writes “NO” next to the question, “Does the applicant have a normal life expectancy?”

The reality is, my doctor doesn’t know how long I will live.  I don’t even know how she will answer such a question.  Since diagnosis, all of my trends have been positive – no changes to my CA125; all scans and scopes have been clean and beautiful; I am fit and active, pain-free, sleeping well.  How ironic:  I am the picture of health.

Last night, Lemondrop related how it wasn’t until very recently that she finally confronted the reality that her cancer could have actually killed her, that it has killed other women in her very same shoes.  When we are diagnosed, we can play amazing mind games, engage in little psychic tricks to insulate us from the stark reality of the potential toll of our disease.  Ultimately, though, the reality will strike us, and we’re left to find a way to manage to the sheer terror which accompanies it.

As I sit here, hours after reading Sarah’s post, I am haunted by her images, and can’t help but think about the irony of the peace and acceptance that comes with finally being able see her final destination, however far off in the distance it may be.  The rest of us, drifting and rudderless toward an undefined point on the horizon, could stand to learn from her.

Posted in adoption, Death, fellow fighters, First Descents, Life After Cancer | Tagged , , , , , , , , , , , , , , , , , , | 8 Comments

a twisted blessing

Posted on October 26, 2010 by Emily

Two weeks ago, my delicious colonoscopy revealed no evidence suggestive of cancer, but something about my appendix struck my doctor as a bit curious.  In the spirit of hyper-vigilance with which I am now and forever to be monitored – and which I truly appreciate, no matter how disruptive and annoying it can be – she ordered a CT scan.  You know,  “just to make sure.” Never mind that my oncologist told me in July that scans were no longer a part of my check-up regimen.   She just takes care of my lady parts (or the empty place where they used to be);  I now have a a whole other fleet of doctors looking after my bum.

My hospital is a wonderful place full of brilliant doctors, but I spent the better part of the two weeks between my scopes and my CT playing ten different kinds of phone tag with my onc, my GI and my internist.  I just wanted to know:  was the test really necessary?  Didn’t I just have a CT in January?  Haven’t we been through all of this?  With each missed call and voice message from a different person in a different sector of Penn Medicine, my agitation grew.  When I finally spoke directly to my beloved Nurse Sarah at my onc’s office, who told me to just go ahead and have the scan, they’re just exercising “precaution,” I was wound pretty tight, even though I was fairly certain everything was “fine.”

Yesterday, I finally had the scan.  Two weeks had felt like an eternity.  I started my day with a barium smoothie, a not-so-pleasant IV (from which I am still sporting a nasty bruise) and five minutes in the donut.  Penn Radiology, god bless them, is a well-oiled machine, and the whole thing took barely more than an hour.  I was relieved to have it done, but of course didn’t quite recognize the low-level anxiety that lingered as I waited for the call with my results.

In an uncharacteristically speedy turn of events, my GI doctor called this morning to deliver the good news:  my appendix looks great.  Nothing to worry about.  Carry on.

I could feel the smile spreading across my face, the lightness in my heart.  “Perfect…great…thank you…,” I told her.  What I really wanted to do was climb through the phone and hug her.

This month’s good test results (colonoscopy, upper GI, CT scan) will allow me to go into my regularly scheduled four-month check-up at the end of November with a greater peace of mind than usual.  A quick pelvic, some bloodwork, and I’ll see you in 2011.

2011.  Just a few days after my upcoming check-up, I will “celebrate” three whole years since my diagnosis.  It’s hard to believe.  I remember so clearly being in the hospital for one of my last in-patient infusions, talking to one of my favorite resident doctors about what my follow-up regimen would be after I finished treatment.  He started rattling off the intervals, and when he said, “…and after two years…”  I just started crying.  The thought of having cancer two whole years behind me seemed impossible.  I didn’t believe I would make it that far.  It sounded like something from a dream.

But I have made it that far – and farther.  I never for a moment take for granted the miraculous gift I have been given, nor will I ever forget the feeling of vertigo, of being at the brink, that overtook me when I learned of my illness.  It makes the reality of each day now, each new adventure, each achievement, each mile run, that much more precious and sublime.

It was not much past 10 AM when I received my good news today, but when I called Mike and told him,  he said, smilingly, “Let’s drink!”  I told my sister, and her reply was, “Hopefully they’ll leave you alone for awhile now!” Alas, they won’t.  Doctors, scopes, scans, surveillance:  it’s all an essential part of my life now, and it’s never going to change.  A few weeks ago, after my scopes, this reality depressed me.  Now, though, I am taking a different attitude.  For each time I get that call, each time I hear the magic words that “everything looks good,” I have another opportunity to celebrate my health and good fortune.

It’s a twisted blessing, but a blessing nonetheless.

Posted in Life After Cancer, medicine | Tagged , , , , , , , , , , , , , , | 2 Comments

never relent: thoughts on game six

Posted on October 23, 2010 by Emily

I could never/Give it up/I could never relent/And I can’t/Wait to see/
What will happen/To me next

I will take my chances/’Cause anything can happen/I don’t believe it’s over/’Cause anything can happen

Neil and Tim Finn

Increasingly, over the past week, I have been preoccupied with the possible. For me, cancer changed the meaning of odds, and today, a few hours from Game Six of the National League Championship Series, with my mind very much on my baseball team, I am again contemplating what it means to overcome them.

It’s a simple, direct journey.  Two years ago, I was lurching through the early stages of my recovery from treatment and the devastating emotional toll of diagnosis.  I was some kind of shell, poured out of everything I thought I knew about myself.  The evidence of my body’s rebellion was written all over me:  my healing scars, my curly duck-fuzz hair, the persistent buzzing in my feet and legs.  And of course, there were continued oceans of tears that I never thought would stop flowing – powerfully and unexpectedly, tides of emotion continually dragging me down, holding me prisoner of my history, the wretched turn of events that had befallen me.

October 2008: World Series Mania

At that same moment, my Phillies were doing something incredible, something they hadn’t done since I was eight years old.  They were systematically dismantling a 25 year legacy of defeat and disillusionment, marching almost effortlessly to a World Series title.  October of 2008 was a brilliant and beautiful sea of red, of odds overcome, and dreams fulfilled.  I watched breathlessly as my team finally achieved the impossible.

But celebrations only last so long.  Fall bled into winter, and the endless cold, grey months that followed the parade down Broad Street gripped me hard, and the downward spiral resumed.  Weakness, sadness, confusion, all joined forces in an effort to swallow me whole.  There were moments when they came close to succeeding.

I wish I could identify the moment when I found the courage to pull myself up, and out – slowly, methodically.  There had to be some kind of rebirth;  I was not prepared to give up.  There was too much love all around me.

I started dragging myself –  sometimes literally – to the gym in the evenings. I stepped onto the treadmill.  A fast walk for a few minutes, a light jog for a few minutes.  These were the ultimate baby steps.  I ignored the fast, slender legs pumping along side mine.  I tuned out the bodies that I saw, pounding, pushing faster and faster up growing inclines.  I tuned only into my own body – first getting to know the limitations, and then finding the strength to push through them.

Endless weeks of incremental increases in distance and pace finally ended with a journey outside, onto the city streets.  Something was freed in me, and I knew there was no turning back.  I didn’t care how long it took.  I didn’t even where I was headed.  I just knew that I was going to keep running, and getting stronger, and pushing myself, away from the devastation that tried to devour me.

October 2010: After the Marathon with my First Descents family

Flash forward, two years later.  Last weekend, I spent three insane, beautiful days in Denver, my new home away from home, celebrating First Descents, and running on a four-person relay team in the Rock & Roll Marathon.  My leg was 6.2 miles – a 10K.  On a picture-perfect morning, I joined with members of my incredible new family, passing the baton (actually, a drumstick) as together we travelled 26.2 miles at 5200 feet.  When I finished my leg and met up with my teammate Bethany (aka “Marhaba”), all I could think was, “More.”  It’s just a matter of time, I now know, until I complete 13.1 on my own and after that, off in the distance, 26.2.  I have come this far, and there is no reason to limit my imagination, my sense of what I believe to be possible.

2010 NLCS: Injured Halladay uses guts and guile to keep Phils' hope alive

With all of this in mind, as I consider the obstacles of the last two years, and the unexpected things my battle-weary body has been able to achieve, I have a heart full of hope for my team tonight.  This year’s NLCS has been a struggle.  The last two years, they breezed into the World Series.  This year, they have overcome injuries and slumps, epic losing streaks and diminished expectations.  Two days ago, it looked like it was all about to end.  Tonight, they can reach back, deep into a place of strength and focus and force of will, and gain the chance to surmount the seemingly insurmountable.

If they want to endure, to fight one more day, it can happen.  This much I know.

Posted in Baseball, First Descents, Life After Cancer, Philadelphia | Tagged , , , , , , , , , , , , , , , | Leave a comment

when the hangover strikes

Posted on October 12, 2010 by Emily

During law school, my husband often talked about the hangover that would strike after the extreme stress and pressure of preparing for exams.  You focus, you strain, you concentrate so hard, and once the exams are over, you find yourself still buzzing from all of the exertion, with nowhere to put your energy.  Once the relief passes, something else sets in – a feeling of anti-climax, maybe even something like depression.

Today, the day after my much-anticipated (and dreaded) colonoscopy and upper endoscopy (and accompanying good results), I found myself similarly hungover. Yesterday, I pigged out and napped, and spent most of the evening in a daze.  Today, it was back to work, and once the relief of my clean scopes lifted, I realized I was left with a renewed anger about the fact that this cycle will never end, that I will be forever poked and prodded, screened and scanned, at regular intervals, as long as I am lucky enough to be alive.  I hate that this is what my life has become.

It occurred to me by mid-afternoon that I needed to run tonight.  By the time I got home, walked the dog and changed into my running clothes, darkness was settling in.  The days are getting shorter, and I haven’t done much evening running here in the suburbs.  I used to run in the city at night all the time, bathed in street lights, dodging cars, other runners, pedestrians.  Even at night, there was always a certain brightness.

Here, in “the country,” it’s a different story.  The wonderful paths that circle all through the nearby parks and along the Cooper River are not, I discovered this evening, illuminated.  I set out shortly after 6:30, desperate to blow out the strong emotions roiling inside of me, not thinking about the gathering darkness.  About ten minutes into my run, I was enveloped.

I saw only two other people along the mile-plus stretch before coming to a major, well-lit intersection.  It felt a little bit dangerous, mainly because I couldn’t see the ground, and the added instability of my always-testy feet, which were extra-cranky after extensive walking in a new pair of boots earlier in the day.  But I didn’t care.  This run felt urgent, and the new, loud and largely unfamiliar music that I loaded onto my iPod last night crashed through my head and pushed me along.

Once I turned south and headed into Haddonfield, I realized something unsettling:  when figures appeared before me in my path, it was impossible to tell if they were receding, or coming toward me.  Eventually, the shapes would either pull off into the distance, or reach me, and pass by.  This optical illusion made me feel even unsteadier, unnerved me as I pounded through the darkness.

It occurred to me then that this sense of confusion, of disorientation, of not knowing whether something is encroaching on me, or pulling away, is an inescapable part of my life now.  It’s beyond mere survivorship; it is unique, I am guessing, to those of us who know that our genes will likely at some point betray us again, and foist cancer back into the foreground.

After my scopes yesterday, and the positive report from the GI doctor, there was relief, a sense that I had won this round.  There was the small matter of my appendix appearing reversed, and the CT scan she wanted me to have to follow-up, but in the moment, in my Twilight-induced haze, it didn’t concern me.  But this evening, when I came home to a voice message from a robotic voice reminding me about my radiology appointment tomorrow morning at 9:45 (Excuse me?  No one called to schedule me for a CT tomorrow…), I felt the shadowy figure – cancer – stirring and moving toward me once again.

From one moment to the next, I cannot tell if I am one step ahead of this demon, or destined for a head-on collision.

Posted in Life After Cancer, medicine, running | Tagged , , , , , , , , , , , , , , , , , , | 1 Comment

these things help

Posted on October 8, 2010 by Emily

I am generally averse to lists.  But on a Friday afternoon, shorthand is useful.  And since I spent last evening processing my pre-scope anxiety in a rather more flowerly fashion than I’d originally intended, let me try to break it down, simply, directly.

Here it is:  scopes are on Monday.  I am still waiting for the call to tell me exactly when to report (kind of reminds me of surgery, kind of creeps me out.)  But I’ll get the call, tomorrow I’ll stock up on all the yummy bowel-cleansing meds, and it will be off to the races.   In the mean time, there are a few things that help keep me on an even keel, holding my anxiety nicely in check:

Cooch spoke for us all when he leapt into Halladay's arms (we were there!)

  • Post-season baseball.  Wednesday night, along with 46,409 of our closest friends, Mike and I lost our minds at Citizens Bank Park watching the other-wordly Roy Halladay throw the second no-hitter in the 100-plus year history of post-season baseball.  To call it mind-blowing, transporting and completly inspiring would be, well, inadequate.  The soul-soothing qualities of this amazing game, and the super-human feats for which it allows, are just what the doctor ordered during this jittery week.
  • Sunshine.  Yesterday was the first day of full, fall sun in what felt like months.  This afternoon, the breeze is cool and the sky is crystal blue.  Tomorrow morning, on what stands to be a similarly brilliant day, I will lace up for my longest run yet.  Just thinking about the air on my skin calms me.
  • Incredible friends who are giving cancer the bird.  My FD sister Fridge is running the Chicago Marathon this weekend.  26.2, baby.  I met this 24 year old force of nature just over a year ago, but I feel like she’s been a part of my life forever.  Every so often this Sunday, while I am prepping for my scopes, I am going to close my eyes and imagine Fridge pounding it out along the streets of the Windy City, and my heart will smile.  And when I am not imaging myself running along side Fridge (at least for a few miles!) I will be thinking about Shotgun, previously known as Sarah, whose concluding thoughts about her own First Descents experience quite literally left me breathless this morning.  Sarah and I share an ovarian cancer diagnosis and thus a certain unshakable affinity, but watching  – from afar – what she accomplished in Colorado last month only served to intensify my sense of connection to her.  On Monday, as I drift off to Twlite land and get ready for the old camera-up-the-bum, I will imagine her razor-sharp humor, the wise-cracks she’d no doubt have to offer, and breathe in the heart-warming reality of our bond.
  • A patient and insightful husband.  No one knows me better than my fabulous husband.  He gets the best and the worst of me, and this morning, as I felt the nerves creeping in, he helped me take a breath, supported my choice to forgo my beloved morning coffe, and offered me some Kava-Kava (new favorite supplement, BTW.)  I may have scared him a bit yesterday afternoon when I threatened to kill someone over my missing referral, but no matter what, he stays at my side, guiding me through the rough patches.  Lord knows I couldn’t do any of this without him.

Having a blast, even before the first pitch: 10-6-10, Citizens Bank Park

So as you see, there’s actually a lot.  And all of the love and awesomeness and good feeling generated by these things (and so much more) is bigger, more brilliant and more beautiful than anything cancer can throw my way.

Posted in fellow fighters, First Descents, Life After Cancer, medicine | Tagged , , , , , , , , , | 2 Comments

dreams, whiplash and pre-scope anxiety (oh my!)

Posted on October 7, 2010 by Emily

I wonder if my GI doc will be a pirate?

It is expected and logical that the eve of two surveillance scopes (lower and upper GI in a delicious one-two punch) would find me in a somewhat heightened state of anxiety.

The psychological whiplash goes something like this:

Spend an entire Sunday (last week) at an adoption seminar, gearing up to take the plunge and start building the family that cancer stole from you.  Finally, you can see the light at the end of the tunnel, and the woman who runs your agency announces at the close of the day, “Everyone in this room will be a parent.”  How does that not give you chills?

But in the world of the survivor, pure, unadulterated excitement is invariably tempered. If not immediately, then soon enough.  For, one week after the adoption seminar, you will find yourself prepping for a colonoscopy and upper endoscopy.  Imagine how much you look forward to listening to Game Three of the NLDS while cleaning out your insides, running to the bathroom every five minutes.  Kind of a buzz kill.

These are “routine” scopes, for surveillance – one of the many perks of being a carrier of the HNPCC genetic mutation (HOLLA!)  You are almost three years post-diagnosis, and things have been going swimmingly.  Hell, people are even remarking on your awesome hair, asking admiringly, “What’s your secret?”  (It’s easy!!  Just get cancer!!)  But how can you not worry?  Every time you take a shit that isn’t picture perfect, you think, “Well, that’s it.  Obviously, I’m a goner.  Guess I won’t get to raise that baby after all.”  Or, better yet, “I hope Mike is cool with being a single parent.”

Put all of these emotions in a blender, and you come up with some seriously insane dreams.  A few nights ago, I endured a multi-layered sequence that was part Dali, part Paul Thomas Anderson, part David Cronenberg.  One moment, I was presented with my new “baby” – a preemie, small enough to fit in my hand, wearing just a tiny little diaper, and the next I was being told that my cancer had recurred – in my lungs, of all unlikely places.

All things considered, I rarely dream of cancer.  When I awake from a dream of recurrence, an excruciating mixture of relief and sadness washes over me.  The aftermath always leaves me newly attuned to my status as a survivor, as if my sub-conscious mind doesn’t want me to ever forget – not even for a second – what I have been through.

Today, the turbulence continued.  It’s Thursday:  my scopes are Monday (nice way to spend Columbus Day, I think.)  I am still awaiting confirmation that the GI practice has the referral from my primary.  I am determined to live Saturday to the fullest:  a long run in the morning (Denver Marathon relay, I am coming for you!), shopping for some new fall togs, then capping off the evening with good friends, good movies and good liquor.

Sunday and Monday stand to amount to no more than a brief interlude in the otherwise relentless parade of awesomeness into which my life after cancer has grown.  Four days after my scopes, I will be on a plane to Denver, preparing to embrace my First Descents family, a dear old friend from my pre-college life and most dramatically, running in my first ever marathon relay.  The six-plus miles that I plan to log during the marathon are not much more than the 10K that I ran over the summer, but it feels different – bigger, more dramatic.  Maybe it’s the sky, maybe it’s the altitude.  Regardless, I am pumped beyond belief.

But there’s a little demon in my mind.  The one who pictures the grim-faced GI doctor coming to my bedside in recovery, reporting, in a halting voice, about the “suspicious findings” in my colon.  The one who imagines news that will once again put my entire life on hold, and send me spiraling into a world defined by surgery and chemo.  Doing the whole wretched dance anew.

These are the thoughts we owe it to ourselves to let out.  When I put them out here, for the world to read, they become containable, and somewhat ridiculous.  Cancer is not going to capsize my life again, not now.  Maybe later – much later.  But not now.  Our rational minds know this.  It’s the demons inside that want us to believe differently.

As this day wound down, as I wrapped up an afternoon hearing and started imaging a cool fall evening at home with my husband and animals, I felt the familiar anxiety of the last two and a half years tighten its grip around my heart.  I checked my phone, and saw a message from a prefix that I recognized as my oncologist.  My heart lurched a bit.  My check-up isn’t until after Thanksgiving; why are they calling me now?

I listened to the message.  It wasn’t from my doctor.  It was from beloved Nurse Sarah, my favorite caregiver during treatment.  “It’s Sarah from Dr. Chu’s office,” she said, and then, knowing immediately where my mind would go, “Nothing’s wrong.  I was just thinking of you.  In a good way.”

In that instant, I went from the clutches of anxiety to a fullness of heart borne of the thought that someone who took care of me almost three years ago is still holding me in her thoughts.  Tears of gratitude fairly welled in my eyes.

I will admit that not long after receiving Sarah’s message, I nearly went nuclear on some poor assistant in my primary doctor’s office when I learned that the referral for my scopes still hasn’t been processed.  Tears started welling again, but this time, out of rage – and worry.  There is no accounting for the terrifying intensity of anxiety connected to scans and check-ups, the suffocating fear of imagining that your cancer has returned.

I didn’t hang up on the unfortunate young man at my primary doctor’s office, but I know I must have sounded a bit unhinged.  It was late in the day;  I’d just been a part of yet another termination of parental rights hearing – a phenomenon which always leaves me drained and sad, even though if it’s what I want for my client.  The voice on the other end of the phone had no idea what procedure or appointment I was scheduled for on Monday, or why I so urgently needed the referral.  He didn’t know I’d had cancer.  He had no idea how terrified I am of having it again.

But those are the realities that act upon me each day – some days, more than others. These are the markers of life as a survivor.

Posted in adoption, Death, First Descents, Life After Cancer, medicine, running, Work | Tagged , , , , , , , , , , , , , , , , , | 1 Comment

actually, it kind of IS about the bike

Posted on September 30, 2010 by Emily

Last weekend marked a huge milestone in my journey away from cancer and back to life. It crept up on me, rather unexpectedly, and left me filled with a lighter-than-air sense of triumph.  After cycling seventy-five miles from the outskirts of Philadelphia to Ocean City, as I lingered at the Day One finish line, inhaling pierogies and Turkey Hill ice cream, it dawned on me:  I am back.

With a few of our "Anti-Corp" teammates on Day One

The MS 150 City to Shore has been a significant part of my life since 2001.  That year, a few short weeks after 9/11, I completed the ride on my own, without friends or teammates to buoy me.  The second day, I rode in torrential, chilling rain the entire seventy-five miles.  Soaked American flags hung and flapped from frames and handlebars and backpacks.  It was my first experience with extended athleticism of any kind, but something happened inside me during those endless, solitary hours with my bicycle.  I knew that cycling, and the MS 150, were now an essential part of my identity.

After missing the 20o2 ride to attend a friend’s wedding, Mike and I rode each year, religiously.  Over the years, we have raised thousands of dollars for the fight against MS, the disease that my mother-in-law has battled for twenty years.  Each summer, from 2003 to 2007, we would train, raise funds, and ultimately end up on the Ocean City boardwalk (usually on a sunny, breezy, early fall day), blissfully stuffing our faces with Mack and Manco’s Pizza and Johnson’s caramel popcorn.  Delirious but delighted, we’d wake up the following morning after sleeping on a thin mattress in a cheap hotel, and ride all the way home.

When we completed the 2007 ride, we had no way of knowing that a little over two months later I would be diagnosed with Stage IIIA ovarian cancer.  Crossing the finish line that year, it didn’t even occur to me that we wouldn’t be back the next year, or the year after.  I could scarcely imagine what fate had in store, just over the horizon.

You'd never know I was sporting a 10-cm tumor on my ovary, would you?

A few short months after the 2007 City to Shore, I was in the hospital, recovering from abdominal surgery.  A few months after that, I would begin chemo.  All the while, my body was in utter upheaval, rebellion – shedding pounds and hair at an alarming rate.  I remember so distinctly writing on my old blog over at Planet Cancer about my completely irrational perception that I was surrounded (virtually, at least) by other young adults who, while undergoing treatment, were able to maintain an insanely active lifestyle, complete with regular trips to the gym, training for distances runs, you name it. Or, as I believe I once put it, “climbing Mount Everest.”  I, meanwhile, could scarcely climb a staircase.

Toward the end of treatment, probably in late May of 2008, I recall announcing to my virtual cancer family that as long as I could get my strength back for the MS 150 (in September), I would be OK (mentally, emotionally.)  Anything short of that would feel like a soul-crushing defeat.

Looking back, it amuses me, in a sad way, that there was a time when I actually thought that four short months would be all I’d need to recuperate from the trauma of multiple surgeries and chemotherapy and resume my pre-cancer fitness regime, culminating in a 150 mile bike ride.  The extent of my delusion speaks volumes about how profound a disruption a cancer diagnosis can be to a once seemingly-invincible young adult.

The 2008 ride came and went – predictable, in hindsight, and tempered quite a bit by the fact that we instead spent that weekend at Citizens Bank Park watching the Phillies clinch the National League East on their way to a World Series victory.  It was the year that followed, though, that surprised me most of all.

Missing the 2009 ride never seemed like an option.  In fact, we registered fairly early in the season, with every intention of participating.  But something wasn’t quite clicking. Getting back in the saddle proved almost as difficult mentally as it was physically. Peripheral neuropathy in my feet left me with a perpetual sense of being off-balance;  I pictured myself climbing on to my bike and immediately tipping over as I tried to pedal, like a child just learning to ride.  I eventually made it back onto my bike, but found I lacked the stamina I craved, that I felt I deserved, that I knew represented the real me.

One sun-dappled Spring morning in 2009, Mike and I rode along Martin Luther King Drive, and as I watched him pull further and further away from me, I just let the tears roll down my face, feeling them dry in the wind.  In that moment, gripped with anger and sadness and frustration over what cancer had done to my body, I was terrified that I would never again be able to ride with the strength and endurance I once possessed.

Despite my best intentions, the 2009 ride was not in the cards.  Around that same time, though, my interest in running began to creep in, unexpectedly. I’ll never know quite what caused it, but I am forever thankful, because I truly believe it was embracing running, and using it as the primary weapon in my recovery arsenal that ultimately allowed me to climb rocks in Wyoming and Utah, and to finally, joyfully return to the MS 150 in 2010, stronger than ever.

This past weekend’s ride was one of the happiest moments in my life – before or after cancer.  The ride is long, grueling and tedious, mostly flat but sneakily ornery in unexpected places.  Hard-core types ride in pace lines;  others text while riding or refuse to clear the road for car traffic, giving us all a bad rap in the townships through which we ride.  The port-a-potties are vile, the rest stops crowded, the snacks plentiful but by the second day, a bit nauseating.  The causeway bridges are wind-swept nightmares.  Muscles burn.  Bugs get in your mouth and eyes.

Happily crazy (and crazily happy) along the route

Still, I danced at the rest stops.  I whooped and raised my fist in the air each time we rode past a photographer.   My fellow riders looked at me with bemused confusion.  It mattered not.  It was 2010, three years after my cancer diagnosis, and I was back.

Posted in cycling, Life After Cancer, Philadelphia, running | Tagged , , , , , , , , , , , , , , , , , , | 1 Comment

atonement

Posted on September 18, 2010 by Emily

Thirteen years into my partnership/marriage with Mike, and there’s still an inescapable awkwardness that creeps in each year around the High Holidays.  While I recognize the significance of this period on the calendar from a theoretical standpoint, some of its weightier, deeper meaning is, I guess, lost on me.  After my mother-in-law was Bat Mitzvah-ed last year at the age of 65, I thought that if I ever chose to embrace a religious faith, it would be Judaism.   The reality, though, is that I am a long, long way from embracing any religion and so, as every year, I am fortifying myself for this evening’s Break the Fast gathering – never mind that there is no fast for me to break.

Today, my husband and many members of his extended family are reflecting on and atoning for their sins through fasting and prayer.  Me?  I ran 5.75 miles and went to the bike shop and the grocery store.  But while Mike drives out to synagogue with his mother before collecting me later on for the “fun” part of the day, I am here, with my afternoon coffee, my iTunes library cranking out a particularly mellow play-list, reflecting.  I feel like I do most of my life “out loud” since cancer; why not my atoning?

For reasons too convoluted to describe, the past two weeks have been a period of tremendous preoccupation with my own complicated familial landscape, and how it has framed my cancer experience.  There has been pain, sadness and truckloads of anger. Fortunately, with unconditional love and support from Mike, my sister, my wonderful old friend Kate, and a completely clutch performance from my therapist, I have come out on the other side of this setback feeling more convinced of my own fortitude and resilience than ever before.  In spite of everything, I have built a beautiful life and it’s just going to keep getting better.

I am not doing a very good job of atoning, am I?  Let me try harder.  For while it is always easy to harp on the shortcomings of others, to place blame and psychoanalyze and pound our fists in indignation, it is so much harder to look inward and see how our own failings contribute to the messes we so often make of our lives and relationships.

But atoning for one’s sins seems to be especially complicated after cancer.  Think about it: you had cancer!  You almost died!!  You endured surgery and chemo, weight loss and hair loss, nausea and fatigue.  You endured people staring at you with pity and horror every time you walked out your front door.  You had children hide their eyes and start to cry when they saw your pale, eyebrow-less face.  And on and on and on.

After that, don’t you get, like, some kind of free pass?  Haven’t you earned the right to speak your mind without consequence, to claim whatever it is to which you feel you are entitled?

Not quite.

It is easy enough, after cancer, to have compassion for and extended kindnesses toward your fellow survivors, those who are fighting, to feel sympathy for those who have lost loved ones to this wretched disease.  What is not so easy, it seems, is to broaden the scope of our charitable instincts to include those who haven’t necessarily shared the deeper nuances and complexities of a life upended by cancer – or even to those who have, but in spite of that commonality, go on living their lives in a different emotional register.

So on this sun-drenched late summer afternoon, in anticipation of the delicious bagels and smoked fish which await me later this evening, let me say out loud:  I hope in the coming year, as my journey away from cancer and into the life that I want continues, that I can show greater patience and understanding.  I have worked hard at truth, honesty and forthrightness over the past two-plus years.  I have tried to see my way out of the darkness and into the light as bravely as possible.  Today, though, it occurs to me that in addition to the insight which I have gained from having cancer, I have perhaps also developed a greater capacity for cruelty.  This may be an outgrowth of my anger.  But while my anger is legitimate, cruelty never is.

This morning on my run, I felt truly awesome.  The cool breeze invigorated me.  I’d set a new goal for myself, and conquered it almost effortlessly;  I could probably even have surpassed it if I’d really wanted to.  I thought about the MS 150 next weekend, the Denver Marathon relay next month, and I just couldn’t stop smiling.  It’s been weird, since cancer, to have such a changed sense of self, of ego.  Sometimes, I just can’t help telling myself that I am fucking awesome.

But that can be dangerous.  After cancer, in order to endure, there’s a kind of unending “pumping up” that’s both inevitable and necessary.  Without it, how could we even keep going?  As a survivor, there is so much that can trip you up, set you back.  Constant affirmation and praise, recognition of fearlessness – they seem as basic as oxygen.

I don’t ever want those things to stop.  Honestly, I am afraid of what would become of me if they did.  What I don’t want, though, is for my own survivor-tinged sense of self to blind me to the consequences of my actions, or to the needs of others.

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

comfort in the fight

Posted on September 12, 2010 by Emily

There’s danger in complacency/And comfort in the fight. – Jonatha Brooke

Every so often, no matter how “great” you are feeling, there are moments in a survivor’s life when the sheer shit storm of cancer and its after-effects come along and knock you sideways.  It’s just part of the deal.  I seriously doubt that anyone who has endured cancer is exempt from this reality.

So, last week, quite unexpectedly, I had one of those moments.  Fair enough.  Old wounds were exposed, raw feelings seeped out.  It sucked.

But, as always – as it must be – onward and upward.

Last week’s knife to the heart – while excruciating – reminded me of some essential, but frequently over-looked truths.

She was even looking out for me in 1974!

I have a world-class sister.  In a lot of ways, we are like night and day, but when the shit hits the fan, she is right there at my side, bolstering me up, reassuring me and clearly ready to do battle for me.  With her in my corner, I know that I can do anything, and that my strength and resilience know no bounds.

My friends are priceless.  They listen to me ramble, and they understand my pain, as unimaginable as it may be.  They have insight and humor and compassion.  They have walked with me along this meandering and often torturous road back to my life, and demonstrated patience and care and devotion that leaves me speechless.

Sourland Mountain Preserve (NJ)

There is comfort in the fight.  Yesterday, on the ninth anniversary of 9/11, I participated in a different kind of vigil, spending a brilliant, cloudless day hiking with a beloved member of my First Descents family.  We talked and laughed, but also enjoyed the stillness of the woods around us.  We shared medical updates, talked about running and compared notes on our camp experiences this year.  I didn’t need to tell him about the emotional upheaval of the last week to feel comforted by his presence, and his implicit understanding of my fight.

With Hottie Bucks, post-hike, 9/11/10

So, take that M&$#!@ F!$@^#! cancer.  No matter how many times you try to trip me up, no matter how you have disrupted the very essence of who I am and have tried to derail the life I want to have, you are no match for me and my posse of love.

Posted in Family, fellow fighters, Life After Cancer | Tagged , , , , , , , , , , , , , , , | Leave a comment