next time, a lollipop

Posted on July 15, 2010 by Emily

“You’ve been through a lot.”

Simple words, uttered by an attending internist I met for the first time this morning, but it was exactly the straight-forward recognition that I look for from people – especially doctors – when they first come into contact with me and my story.

Pre-cancer, I used to have terrible anxiety about visiting doctors (probably because I was always afraid they would tell me I had cancer.)  Now, at least with my established team of caregivers, I look forward to my checkups (one is coming at the end of this month) and screenings (can’t wait for my colonoscopy and upper endoscopy this fall!) for a kind of comfort and reassurance, as an opportunity to have my current state of good health affirmed.  And when I meet new doctors, as I did today (I went to establish care at a new internist’s office, because my previous one was so crappy), I expect just a basic amount of recognition of, as my friend this morning said, what I have been through.

Today’s visit was a triumph for other reasons.  First thing this morning, I headed to West Philly for my appointment, to the same building where my cancer journey began in November, 2007.  Just a few weeks before being diagnosed, Mike and I headed to a fertility specialist there, and on the way out – after an unnerving sitdown with a very nice doctor – I found myself doubled over in pain, ultimately vomiting in a taxi on the way back to our house.  Two weeks later, when I returned to the same office for testing, a vaginal ultrasound revealed the 10-cm mass on my ovary, and I spent the rest of the day waiting for and having an emergency MRI.  That night, the fertility doctor called with the very unpleasant news:  things did not look good.  They suspected cancer.  The next day, my new oncologist’s office called to set up my first appointment.  And the rest, as they say, is history.

Today, on a warm summer morning, with my wavy post-chemo hair ticking the back of my neck, I walked along the same stretch of Market Street where I had literally collapsed into a writhing heap, gripped with pain from the mass that I didn’t yet know was growing inside of me.  Mike worried I’d be struck this morning with a bout of post-traumatic stress  – a reasonable concern, but one which proved unwarranted.  Instead, when I arrived at my new internist’s office for the first appointment of the day, I felt calm and strong, and most of all, healthy.

Blood pressure: 119/67; temperature 98.2.  And, best of all, the second straight doctor’s scale confirmed that I have finally lost all fifteen-pounds of my post-chemo weight.  Things were off to a great start, and I hadn’t even seen the doctor yet.

The bright young resident met me promptly as I entered the exam room, and I was astounded to learn that she had my entire history already, and had been reading up on my diagnosis and genetic condition.  I had come prepared, with names and numbers of my other doctors, even the written materials I’d received from my good friends at genetic testing, but was relieved and gratified to discover I didn’t need any of it.  My new doctors had done their homework, were up on HNPCC – in other words, they had done all the little things that make such a huge difference for a patient.  This adorable resident even took the time to tell me about a service that Penn offers for viewing records and getting test results on-line – something none of my other ten zillion Penn physicians had ever bothered to mention.

By the time the gray-haired attending with the fabulous Boston accent came in, gripped my hand, and acknowledged my ordeal with that one little phrase, I was practically ready to hug everyone in the office.  (Except, maybe, the surly troll of a woman at the check-out desk.)  All of my questions were answered, every nuance of my surveillance regimen was addressed, referrals were made, smiles offered.  The only thing I didn’t get was a lollipop.

On the eve of my treatment, I remember sitting on the couch, terrified and down-hearted, having what was undoubtedly my nineteenth nervous breakdown of the day.  Through my tears, I said to Mike, “I want to be a really good patient.  I want to get an ‘A.””  I didn’t know exactly what my doctors were going to be asking of me,  but I knew that I wanted to do everything within my power to help the people who were trying to save me.

Two years after treatment, as my anxiety about my health becomes increasingly manageable with each passing check-up, I am finally beginning to understand that my history and my genetic predisposition for future cancer do not define me.  Rather, with empathetic, conscientious healthcare providers, I am being given the opportunity to take control of my health, and hopefully, live a long, long time indeed.

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existential crisis

Posted on July 14, 2010 by Emily

“What, exactly, am I doing?”

In recent weeks, this question has been echoing through my mind.  A few possible explanations for this existential crisis:  summertime.  Lately, the heat in Philadelphia has been otherworldly, leaving me wrung out like a dishrag at day’s end.  It’s often too hot for a run, even at 6 AM, and the endorphin deficit leaves me cranky and out of whack. Evening comes, and after walking the dog and having a dinner and a glass of wine, I am cooked.  Not exactly a routine conducive to blogging productivity.

When I am not drained from the heat and humidity, in the those rare moments of clear skies and cooler air, I am either joyfully watering my fledgling garden, lacing up my sneakers or otherwise reveling in the upside of the summer months.  Again, not the best environment for establishing writerly discipline.

Another possible culprit:  the First Descents blog.  Recently, my FD family paid me an enormous compliment and asked me to take charge of the blog on their site.  Most of the content is provided for me; I just have to dress it up with some pretty words and a link or picture or two.  It’s not terribly time-consuming, but it gives me a chance every other day or so to know that I am actively doing something to give a little bit back to this organization that I love so dearly, and to which I owe my life.

But there are only so many hours a day to devote to WordPress, and I see that I’ve been neglecting SEE EMILY PLAY.  Whooops.  Definitely not part of the plan.

Why do I write here?  It’s been almost a year since I started keeping my thoughts in this format, and it’s starting to feel like it’s time to evaluate what, exactly, I am doing.  It’s been an amazing year, a year that has seen my world burst open with love and possibility thanks to First Descents and all of the incredible people who have entered my life.  Two FD camps; 5K’s, 8 and 10K’s; last weekend, I biked 66.2 miles  – on my own, if you don’t count the several thousand other strangers riding with me – for the American Cancer Society.  I’ll be doing 150 miles in September for the MS Society.  I’ve got my eye trained squarely on the Vermont City Marathon next Memorial Day – to run either as part of a two-team relay with my aunt, or a five person person team with other family.  A year ago, I didn’t think I would be able to achieve any of these things.

Adrenaline, and the joy of feeling my body slim down, grow stronger and more forceful, has become a major preoccupation, providing a profound source of pride and sense of accomplishment.  So, too, though, has the time I have spent alone, trying to order the thoughts that enter my mind, the mind of a still-young woman trying to rebuild her life after cancer, to understand how the world looks now, closing in on three years after diagnosis.

But what, exactly, am I doing?

I’ve had friends, family and fellow survivors say variations on the following:  You should write a book.  For a long time, I found this sentiment flattering, because for a long time, I just wrote words that no one ever read.  I always thought I had a certain flair for writing, but it wasn’t until the birth of my blog that I was able share my words with an audience – no matter how small – and benefit from positive feedback.  Of course I should write a book!  I’m a good writer.  Shouldn’t all good writers write books?

Ummm…

It’s one thing to sit down for a half hour once in awhile and bang out a few hundred words, ruminating on the day’s events, or turning over an idea that gets stuck in my mind. It’s something else entirely to bring focus and discipline to bear, and try to get at the essence of something sustained and substantial.

A few weeks ago, I came across a piece in the New York Times about patient memoirs, and the therapeutic value of writing about illness.  In the end, I found the piece, written by an MD, disheartening, and it made me reconsider what, exactly, the value of my writing is to me, or anyone else.  The author noted:

Few of these efforts rise to the level of great literature, but that may be beside the point. Should memoirs of illness be held to the same standards as other writing? Or do reader and writer form a different relationship when the health crisis of one becomes the theater of the other, a relationship in which a reviewer has very little business meddling?

I haven’t written my book yet, but if I did, this author made me think, would it really be just a self-indulgent exercise, a form of therapy that is just about me, “working out my issues,” rather than a meaningful contribution to the human conversation about life and death?

My husband and I have talked many times about the vague notion of me writing a book:  what would it look like?  Fiction?  Non-fiction?  Memoir?  We have puzzled over ways to get started; he told me about one of his favorite young writers who sets a words-per-week goal for herself and displays a counter on her blog showing whether or not she’s meeting her objectives.  It reminds me of the wisdom of a favorite old improv acting teacher:  “Don’t talk, just do.”  If you want to write, write.  Write a lot.  After you have a giant heap of words in front of you, worry about giving it shape, having it make sense. But produce the raw material.  Otherwise, you’ll never get anywhere.  Paralysis by analysis.

I could, perhaps, go all the way back to D-Day, late November, 2007, and re-trace every agonizing step of my cancer journey, up to the present day.  It would be difficult, enlightening and perhaps even meaningful, in some way – maybe to the next young woman who, thanks to cancer, is robbed of her fertility at the precise moment she’s trying to conceive.

Or, I could just start throwing words down, every day, a little at a time, and keep trying to figure out what my life means now, in the aftermath of that nightmare.

Either way, I hope you’ll stick with me for the journey.

Posted in Infertility, Life After Cancer, Writing | Tagged , , , , , , , , , , , , | 4 Comments

back in the saddle, back from the dead

Posted on July 5, 2010 by Emily

This morning, as I rode my bike through the corner of South Jersey that I now call home, the sound of the cicadas in the trees took me back to a very particular place:  Main Line YMCA day camp, about thirty years ago.  I remembered the prickly heat of summer on my young skin, and, in particular, the torment of swimming classes and archery lessons.  Even seemingly innocuous games like Red Rover and Red Light, Green Light were a challenge for my decidedly unathletic self.

Summers were awkward times for a child like me – summer being the time when we children were set free from the soul-deadening confines of the classroom, let loose to run and swim and play various forms of ball, to get in touch with our more primal selves, like the sprites we were supposedly meant to be.  Fortunately, I eventually found my place among the slightly more off-beat, “creative” types, and eventually spent many happy summers in theater camps and programs where my lack of athleticism wasn’t an issue.

In spite of my lack of natural athletic skill, I had managed, long before cancer struck me in my mid-thirties, to find a level of fitness and physical activity that suited me.  While I never had the kind of coordination and agility required for most team sports, I did manage – over the years – to transform myself into a relatively fit, strong young woman.  At some point, I think when I returned to Philadelphia for law school about fifteen years ago, I became enamored of cycling. Living on the edge of Fairmount Park and its endless trails, there was an inevitability to it.  Cycling just seemed to suit my mind-set as well as my body type.  It fast became a passion.

In 2001, I rode in my first-ever MS 150 City to Shore Bike Tour – two 75 mile days of riding from just outside Philadelphia to Ocean City on the Jersey shore, and back again.  I will never forget that ride.  I didn’t have a riding partner, I wasn’t part of a team.  It was just me, and several thousand other riders – some hard-core, many extremely laid-back, most, like me, somewhere in the middle.  The first day was brilliant and sunny, and Mike met me in Ocean City for the night.  The second day, we woke in the dark to driving rain and wind – the conditions in which I was destined to ride 75 miles back to the city.

I had never ridden in weather like that, but I found myself in a hyper-focused, determined state of mind that propelled me from one rest stop to the next, as I watched other riders pack it up and hop on the sag wagons.  There was no shame in that; people were wiping out, the roads were treacherous.  But for me, for reasons I couldn’t even articulate, stopping was not an option.  Giving up wasn’t in the cards. The best logic I could come up with was, “Well, I’m already wet and freezing.  What good is stopping going to do me?”

I ultimately crossed the finish line a sopping, ice-cold mess.  Mike and his mother, who has MS, met me, and when I pulled my shoes and socks off in the back seat of the car, I discovered my toes stained blue from the dye in my socks.  They wrapped me in blankets, drove me home, and I slept that night for about 18 hours.

For years after, that one hellacious day of riding was always the benchmark, the standard by which I would gauge any test of my physical stamina.  Nothing else ever really came close; having done something so slightly insane during my first ever organized ride, it seemed quite literally that there was nothing I couldn’t do.

It’s a mantra that has stayed with me, and gained even more significance since cancer.  Perhaps that attitude is what made me gravitate toward running when I began my rehabilitation after treatment.  Biking was easy; running was hard.  Naturally, then, I should be running.

Running has done amazing things for my mind and body.  What I see now, as I prepare for my first organized ride in years, for the American Cancer Society, is how the discipline I have maintained with running for the last year and a half has also made me a stronger rider. Even though I went a prolonged period of time – over two years – without riding regularly, now that I am back in the saddle, muscle memory is kicking in, and the love I have for being on a bike is resurgent.

Saturday morning, I set out on a long solo training ride. Following a cue sheet from a previous MS 150, I cruised along the increasingly familiar roads of my new neighborhood, heading east toward the less populated areas of Marlton and Medford, and finally into Atco.  About six miles into my ride, I picked up another lone rider.  He was not familiar with the less-travelled roads, and was happy to let me guide him.  So we rode together for most of the rest of my intended route, and picked up a third rider on our way back toward home – a fellow who had somehow gotten himself out to Marlton Lakes but wasn’t quite sure how to get back to “civilization.”

It was a fantastic feeling, leading these two strangers with confidence and strength.  Biking is a solitary sport, and even when we ride together, there is something about each of us traveling alone, on our own road.  These two people needed guidance, and I was able to provide it, as my own legs powered me across the miles.

Before I met up with my unexpected riding partner, I found myself thinking about what it had drawn me to cycling all those years ago.  Something about the speed, the breeze, the motion of the wheels, the silence in my mind.  I need music to propel me through my runs; cycling has always been an opportunity to allow my own thoughts, my own music to flow from my mind.  My mind can be clear, like a meditation, or buzzing with activity.  I can sing while I ride, feel the songs that rise up from my heart.

My brand-spanking new Shimano cycling shoes

After my long ride on Saturday, my relatively minimal anxiety about the ACS ride next weekend was put to rest.  I thought of how I fought my way through seven hours of riding in the rain on that ridiculous second day in 2001, and how I have fought my way back from the edge of death.  There is nothing I can’t do.

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running for my life

Posted on June 27, 2010 by Emily

A huge box hastily labeled “CANCER STUFF” was finally opened today, one of the last from the April move.  The room it has inhabited since April 9 is at last turning into the study that I have been dreaming of for years, and so today I took scissors to tape and sliced it open.  I hadn’t packed it, so I wasn’t sure exactly what was inside, other than the enormous green “cancer book,” which for the past two and a half years has been stuffed with every single piece of paper related to my diagnosis, treatment and continuing surveillance.

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I unearthed the binder, as expected, along with a small pile of other cancer-related miscellany, including a series of pamphlets from my hospital – the ones with titles like “Research on Early Detection and Cure of Ovarian Cancer” (maybe not such helpful reading material for someone diagnosed Stage III.)  There were quite a few of these leaflets, none of which I had ever looked at; they were no doubt handed to me as I sat in my oncologist’s office on that cold, dark night, December 3, 2007, that changed everything.  I was in shock then; handouts were not the answer.

One of the pamphlets I came across this morning, which I certainly have no recollection of ever receiving or reading, was called “Walking for Fitness – Your Exercise Guide After Chemotherapy.”  The cover depicts a couple – late middle-age at least, perhaps borderline geriatric – arm in arm, smiling as they stroll.

I found it a bit ironic and sad;  I discovered this well-intentioned bit of advice from my cancer center the day after I completed my first-ever 10K race.  No one at my cancer center ever talked to me at any length about the process of rehabilitating a young, otherwise healthy, previously active body.  Instead, they handed me written materials aimed at encouraging old folks to start walking after treatment.

When I finished treatment, I didn’t want to walk; I wanted to run.  Without any real guidance, I developed my own, somewhat haphazard regimen.  I started with regular visits to the gym, gently moving my body on the rowing machine and stationary bike.  Breaking a sweat – a good sweat – for the first time  since before treatment was practically a religious experience.  At some point though, perhaps when I felt my stamina starting to come around, I became determined to run.  I can’t say why.  My post-treatment struggles were so focused on my feet – the aching bone pain; the incessant buzzing and tingling; the diffuse numbness; the sensation that I always had socks bunched up around my toes, even when I was barefoot – that I literally became obsessed with proving to myself that my feet could work for me, that they could not just hold me up and keep me steady on the ground, but that I could pound them into the ground, regularly, vigorously, and that they would not fail me.

The roots of my newfound passion for running, then, are at the root of me – my feet – the site where I am connected to the earth.  Everything else that has followed from running – weight loss, improved endurance – has been an unexpected reward.  My feet are still a source of aggravation, but I have reached a point where I know I can rely on them to carry me far (though perhaps not terribly fast) and that every step or stride does not have to be a reminder of the poisons that ravaged my body in the name of killing my cancer.

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Earlier this week, on the eve of the 10K, my friend, also a young adult cancer patient, presented me with a pair of Nike (RED) laces.  The night before the run, I gleefully threaded them through my bright green Pumas, yielding quite a visual statement.  As I ran yesterday, on a brutally hot morning, along a poorly-designed course that ended, rather inhumanely, with a shadeless stretch across a high school football field and around a track, I periodically looked down at my feet and saw those bright red laces gleaming.  I thought of the people whose struggles the (RED) campaign hopes to help alleviate; of my friend who gave them to me, and the battles she has had with her own cancer; I thought, as I always do, of the young people I know who are boldly, bravely rebuilding their lives and bodies after surgery and treatment.  As we ran along the sandy roads of the Pinelands, surrounded by trees, I thought of my Uncle David, who lost his fight three years ago last month.  And, as invariably happens, I took the energy and courage of all of those people, and let it course through me as I felt myself sagging in the morning sun, struggling to make it to the end.

As I crossed the finish line and my pace slowed to a walk, I headed, alone, to the shade along side the school.  I walked on, my heart pounding, my skin stinging, and felt the tears rise.  They came easily, and I breathed out the sadness and relief and frustration and elation that they represented.  A minute or two later, rejoining my husband and friends, I collected myself with an intake of air, and came back to a place of strength, knowing that what I was feeling in that moment was unique to my experience as a survivor, and was perhaps impossible to share.

Later in the afternoon, after food and naps, Mike said to me, as we strolled through the oppressive heat, “I keep thinking about the summer of 2008.”  Meaning, of course, the summer that inaugurated my post-treatment life.  The summer when I couldn’t sit in the sun, or stand the heat, or climb stairs in our old house, when walking the dog for fifteen minutes was a Herculean task from which I would require extended rest and hydration to recover.  “I think of what was going on then, and what you can do now, and it’s amazing.”

It is amazing, and I think about it every single time I lace up my shoes, or climb on my bike.  I will never, ever take for granted the chance I have been given to once again fully inhabit my body.  When I come across reminders like I did today – relics from my life as a full-time patient – a chill goes through me, memories flood my mind.  But then, a moment later, I give thanks – for the reminder of what happened to me, so that I can better appreciate the person I have become.

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

mister mean genes (or, expect the unexpected)

Posted on June 23, 2010 by Emily

Today I have had the surprising experience of someone else’s good news making me feel like shit.  Are we in middle school again?  I recall, quite starkly, a “profound thought” from my high school notes of the same name, which I produced almost daily with a friend: “Jealousy is an ugly, ugly thing.”

But is it jealousy when you find yourself ruminating on your own crap luck in the genetic lottery, after learning that a member of your extended cancer family just found out that she is in the clear?  I am not quite sure what to call it, other than unexpected and disorienting.

Unexpected, because in all honesty, I have been pretty much as high as a kite on a daily basis for as long as I can remember – at least since the move into our new house a little over two months ago.  Hot on the heels of the move came FD camp in Moab; insane fun in New Orleans; 5K’s, 8K’s; running and biking and feeling fit and strong; a rocking housewarming party; visits from dear FD family.  It’s been an insane avalanche of good vibes, seemingly never-ending, to the point where cancer has almost receded into a faint background hum, from its former status as a prominent and perpetual source of anxiety and depression.

As the kids used to say, “SIKE!”  For reasons passing understanding (or not), when I read today about my friend’s good news – that she had tested negative for a genetic mutation that presumably would have predisposed her to a recurrence of her cancer, or even a new primary cancer – I was gripped with the sudden feeling that I am doomed.  She wrote, innocently enough, of feeling sad for all of the women she knows who are still waiting for the “other shoe to drop,” and my immediate reaction was, “Well, I guess that’s me.”  It’s a metaphor I recall vividly from my days immediately post-treatment.  Every time I examined myself, or saw myself in the mirror, and found anything slightly changed or out of the ordinary, I thought, “That’s it” – the other shoe dropping.

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Today, my sadness and anxiety mixed almost immediately with guilt.  Why should someone else’s good news be distorted into something about me, my genes, my rotten luck?  I think an unspoken truth about life as a cancer survivor is that we are all constantly measuring ourselves – our luck, our prognoses, our side-effects both long and short term – against those of our peers, those with whom we are share membership in this baffling, beautiful, hurtful club.  A few days ago, I wrote about my guilt over being strong and healthy over two years post-diagnosis for Stage III ovarian while other women similarly diagnosed are now facing clinical trials, multiple recurrences, and wondering out loud how many more weeks or months they have left to live.  Today, I feel like I am betraying bonds of friendship and mutual trust by feeling hurt and sad when a fellow cancer warrior happily announces that her genes are in order.

I wonder how many of us have thought – at different points along our cancer journeys – “Thank god I’m not in that person’s shoes; I can’t believe how lucky I am (in the relative cancer scheme)” – or, conversely, “It’s just not fair that this person’s disease has taken one course, and mine another.  How come her uterus and ovary were saved, but not mine?  Why do I have a genetic mutation, and she doesn’t?”  Probably most of us.  But what I think we all have to come to terms with at some point is that fairness, as a concept, is utterly absent from any consideration of cancer and how it overtakes our lives.  We all learn, sooner or later, that the logical response to the age-old question “Why me?” is, “Why NOT me?”

But one unexpected turn deserves another.  As if on cue, right after falling into this microscopic rut, fate intervened to pull me up and out.  One of my clients (whose mother, ironically, died of breast cancer three and a half years ago,) a troubled teenager who is placed on the other side of the state, has been having a lot of difficulty lately, and I spoke with her this afternoon in an effort to explain the status of her case and her prospects for coming home.  When the conversation began, she sounded utterly depressed and on the verge of tears, responding only in monosyllables.  By the end, I had her laughing, there was a light in her voice, I could hear her smiling, and she agreed that she would hold up her end of the bargain so that she could return to Philadelphia for the start of the new school year.

I hung up the phone, feeling about ten feet tall, still smiling and chuckling to myself.  I have represented this young girl for four and a half years, have watched her deal with her mother’s illness and death, being separated from many of her countless siblings, battle behavioral and truancy problems, and bounce from foster home to group home to residential placement.  The circumstances of her life are such that I can’t even imagine, and there are decided limits on what I, as her lawyer, will ever be able to do to change or improve them.  But in this short talk we had today, I saw how I was able to reach out to her when she was in despair, and give her a reason to be positive and hopeful.

It’s funny; my reality hadn’t changed at all over those few hours today, just as it hadn’t changed from the moment before I read my friend’s news to the moment after; my genes are my genes.  I can’t change them.  Right now, as far as I know (how far do ANY of us know?), my body is behaving.  The vigor and energy I feel each day is real; an infernal mutation will not and cannot change that.  I like to picture the cancer cells which may be lying dormant within me as a bunch of bungling criminals who can’t quite get their act together, unable to crack the safe while the cop sirens grow louder.  Maybe, one of these days, they’ll figure it out.  In the mean time, with gratitude and a full heart, my life goes on.

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the essence of injustice

Posted on June 18, 2010 by Emily

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Other women with ovarian cancer are dying.  Lots of them.  Young women, women my age.  I don’t understand why they are dying and I am not.  I feel a little guilty.  No, a lot guilty.  I am so fucking alive, I have so much energy, I feel my body getting stronger and leaner and more vibrant each day, and I know these women are fighting with every ounce of whatever is left of themselves just to make it through another day.  It makes me scared, angry, confused and incredibly sad.

These women are visible, they are out there, shouting at the world (when they aren’t crying their pillows), making their stories heard.  They are funny and courageous.  They are doing things I don’t know if I would be able to do if I were in their shoes.  Two years ago, I felt myself walking down the same path with so many people – diagnosis at about the same time, similar treatment.  Swapping tales of nausea and boredom, aches and pains, doctor’s offices, venturing into the outside world.  But somehow, for some of us, life turns one way – our treatment yields positive results – and for others, it turns quite another.  I cannot understand or accept this.

My cancer is a quirky mother fucker.  I was STAGE III.  There are only four stages.  Everyone knows that with most forms of cancer – especially pesky ones like ovarian – “early detection” is the key to improved survival rates.  Stage III definitely doesn’t qualify as early detection, nor does a tumor the size of a small grapefruit.  And yet here I am, two years post-treatment, feeling better than I ever have.  There is this nagging thing of a genetic mutation that predisposes me to other forms of cancer down the road, but for now, I am clean.  Part of what makes ovarian cancer so deadly is the fact that it occurs in such close proximity to so many major organs (colon, liver, stomach.)  Somehow, somewhat miraculously, I think, grapefruit notwithstanding, there was no metastasis to any of my other major organs.  Scary as shit, but kind of cool – sort of like narrowly avoiding a head-on collision.

Why am I healthy two and a half-years post-diagnosis, and others are not?  No one can tell me.  My doctor can’t tell me.  I read things here and there about how those of us with HNPCC, while at risk for many kinds of cancer, actually have survival rates higher than the non-HNPCC population.  Ironic.  Twisted.  Still, it doesn’t make sense.

When I hear from my ovarian sisters who are deep in the fight, all I want to do is give them huge hugs and tell them how sorry I am.  I want to share the blessings and stupid “good luck” of my own diagnosis and treatment.  I would even share my mutation with them if I knew it would help.

Two years ago, it never occurred to me that I would be sitting here now, in my new house, with my awesome hair, fit and strong, with a calm, light heart, gearing up for a big run tomorrow morning.  I couldn’t even imagine a future for myself.  Two years ago, I thought the women whose struggles mirrored my own would remain in lock-step with me, that our fights might ultimately bleed into a shared recovery and renewal.  It was an uncertain time, the future a murky blur, but I took comfort in the camaraderie that I felt with my fellow fighters.

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It would be misleading to say that I don’t still struggle.  I do.  The difference now is that I am equipped with a sturdy body and mind, and I have the strength to face the reality of my life as a survivor, and everything that entails.  I don’t know why I have been allowed the opportunity to keep on living, fully and happily, while so many others are still in the trenches, battling the beast that is cancer with every last ounce of courage and determination they can muster.  It is the essence of injustice, and it breaks my heart.   Still, I endeavor to transform my rage and sadness on behalf of these women and turn it into something positive, and to treasure each moment of this astounding new life I have been given.

Posted in cancer, Death, Life After Cancer | Tagged , , , , , , , , | 3 Comments

performing cancer

Posted on June 14, 2010 by Emily

My efforts to explain and unpack my cancer experience have always been narrative, linear.  I try to tell a story – or, lots of little stories – clearly, concisely, and in a way that people can connect with and understand.  All I have really done since I started writing about cancer is describe what is happening to me, how my world has changed, how things look to me after facing death and confronting the reality of this virulent disease.

This morning, I woke to a note on Facebook from my dear friend Anne.  My sister, reading my last post, challenged Anne to turn the tags from this blog into poetry.  Anne, never one to shy away from a challenge – especially not an artistic one – almost immediately produced the following:

Bald descents into chemo hole
rock pictures of fertility angels
and first love child Oscar.
Menopause gardening
Hottie Bucks climbing…
Pregnant co-workers testing
adoption anxiety and recurrence fear
5K, 10K, Utah, climbing…
Mikey, New Orleans, birthday, climbing…
Love, Lucy, Climbing.

I love what Anne did because she took the ideas and images that populate my writing, reduced them to their barest essence, and arranged them in a way that painted a vivid, but slightly obscure, picture of my experience.  There is, I realized, after reading those words – my words, actually – assembled in that order, that there is something so powerful about capturing an experience in a more impressionistic, less literal way.  While my inclination tends toward the narrative, and I often rely on stories as a means to teach and demonstrate, something about what Anne did flipped a switch in me, made me think about my cancer more abstractly, and perhaps more universally.

It goes without saying that cancer is great dramatic fodder.  We’ve seen it endlessly in film and television.  We’ve even watched one of my favorite actors, Emma Thompson, battling metastatic ovarian cancer in WIT:

The late, great Lynn Redgrave, who passed away from breast cancer last month, produced in her final months a one-woman show based in part on her own cancer experience.  Perhaps we want to hear people’s cancer stories, whether real or imagined, because it speaks to something so universal – our collective fear of our own mortality, the unpleasant awareness of the ways in which our bodies can seem like ticking time-bombs, waiting to betray us without warning.  Or perhaps we are drawn to these stories because we want to know how we are supposed to behave, or what we will feel like, when it happens to us, or someone we love.  We need someone to tell us how to act.

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Acting was an integral part of my adolescence and young adult life.  Some of my happiest moments in middle school and high school were on the stage, and my love of the craft sent me to Northwestern, where I originally intended to study theater.  Things change, though, and a life in the theater  – at least not explicitly – was not meant to be for me.

What remains, though, is an intense appreciation for performance in every day life, as well as for the all-too-rare moments when I have the opportunity to sit in a darkened theater – as I did last week – watching artists create another world that I am invited to inhabit for a few hours.  Now, looking back, whether because of Anne’s poem or some other intangible forces acting on me, I see how much performance there was in my cancer.  While I never wore a wig, or painted on eyebrows, there was effort and exertion over those endless months that was, without question, a kind of act.  Acting to mask the panic, pretending to be just another person living without a thought for what lies around the corner, unseen.  Trying to be “in the moment,” when I was afraid that it might be my last.

The world probably doesn’t need another one woman show about dying of cancer, chemo, baldness.  But if it did, I would surely ask Anne to help me with the script.  Perhaps we’d just have a staged reading of poems made up of tags from this blog.  But one thing is for sure.  As long as there are words, as long as cancer continues plaguing my friends and family, as long as I am here, I am going keep searching for better, more meaningful and creative ways to tell the story of a woman who faced death, looked it squarely in the eye, and kept on walking.  And keeps on running.

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TWO YEARS ON: TO LIFE

Posted on June 12, 2010 by Emily

In an attempt to measure the journey of the last two years, let me try to qualify different kinds of exhaustion.  Today, I am, I admit, a bit wiped out.  Last night, in celebration of Mike’s birthday as well as the second anniversary of my completing treatment for stage III ovarian cancer, we reveled with our dearest friends – as we had so many times over the course of my illness – playing poker, drinking with abandon, laughing uproariously, singing and playing air guitar.  We finally opened the bottle of proseco our realtor gave us when we closed on our house, and followed it with beer upon beer.  A lucky few of us even got to savor the last drops of a bottle of Jose Cuervo Tradicional.  We did it up right.

Late to bed, and early to rise.  The abundant windows in our new home are both a blessing and a curse.  Light and air flow easily, and make the house feel cool and breezy even on warm days.  But sleeping with the door in our bedroom open also allows poor Lucy, our faithful basset, an unobstructed view of the various forms of wildlife that populate the backyard.  When the first birds start chirping at dawn, Lucy is up like a shot, and ready to hunt.

And so, somewhat unhappily, I was roused earlier than I’d have liked, and was ready to lace up my running shoes not quite seven hours after I finally shut out the light the night before.  (Or should I say, earlier this morning.)  Mike ultimately rallied as well, and we set out, both a bit spent, logging just shy of four and a quarter miles on a new route through the neighborhood and surrounding parks.  Another humid morning, and cooling down at the end, I felt wrung out, my face burning with sweat.  But my heart was beating with a calm strength and rhythm, and my legs felt like coiled steel springs.  Running is honestly transforming my whole sense of my physical self.

Some hours later, after a big meal, a shower and steady stream of iced coffee and water, the fatigue hangs lightly but persistently over my skin.  There may even be a nap in my future – a decidedly rare occurrence. Lately I have been running on a seemingly unending current of energy, so it’s odd, in a way, to feel myself sagging.  Nonetheless, it makes sense, it’s logical and appropriate.  My body is asking for rest that it needs and deserves.

Two years ago yesterday, I had my last out-patient infusion of Taxol and Cisplatin.  Chemotherapy, after four months and 12 rounds of treatment, was over.  I wanted so desperately to celebrate, but there was virtually nothing left of me.  The exhaustion which wracked my body then was menacing, wrong, even painful – something no nap could ever cure.  Twenty pounds below my pre-cancer weight, frail, pale, hairless, I was unrecognizable to myself.  Worst of all, I couldn’t even muster the energy to do anything for my husband on his birthday, which, after my last treatment had to be pushed back (for the first and ONLY time) due to my diminished white blood cell count, ended up coinciding with my last day of treatment.  My dear friend and neighbor Iva had to buy Mike’s gifts for me.  I don’t even remember writing a card for him.

Most people I know who have gone through cancer treatment look forward to that final infusion with a kind of crazed, weary anticipation:  Just get me to that last day, we tell ourselves.  Choirs of angels will sing.  There will be noise makers and pinatas, champagne will flow.  The clock will be reset and life will, at that moment, begin again.

Not so, June 11, 2008.  Like runners reaching the end of a sort of satanic marathon, perhaps a course riddled with pitfalls and traps, pits of snakes, fire-breathing dragons hot on our heels, my husband and I crossed that so-called “finish line” exhausted, afraid and forever changed.  We attempted a birthday “celebration” of sorts – I invited our nearest and dearest, much to Mike’s chagrin – and we grimly ate pizza and salad and reflected, as best we could, on what we had all been through together.  I fought as hard as I could to muster positivity and relief, but the metallic nausea ate away at my stomach and mouth.  My abdomen swelled from the treatment that afternoon, and my bones begged to lie down and sleep.  I remember crying quietly and steadily as my friends and husband shared their thoughts; it felt like I wasn’t even there.

Over the course of my cancer journey, Mike produced a series of videos assembled from footage which we shot during hospital visits, gatherings with friends, visits from family and the untold hours spent languishing at home.  While there is no documentary evidence of that last awkward, poignant evening after my final treatment, there is a video memorializing the last cycle, including the final treatment.  The miracle of what Mike did with these videos is that he managed to make something so excruciating and horrifying into something so beautiful and true.  I am so grateful to have these records of my cancer journey.  Here is the final one:

Last night, after a great deal of alcohol and yet another absurd poker game, Mike hit “play,” and we all stood around his computer and watched the memories unfold.  I have watched these videos over the past two years, and seen many images of myself during treatment.  None of this was new.  But in that moment last night, after this riotous evening, on a day when I felt so alive and happy, and had so many opportunities to show my husband how much I love him, on a day when my hairdresser cut and colored my hair and BLEW IT OUT STRAIGHT, such that I could see, if only for a few hours, some version of the person I was before cancer – in that moment, there was no stopping the emotion welling inside of me.  By the end, the tears were flowing.  We all huddled together, and hugged, and they let me cry.  We affirmed our love for each other.  And then, while wiping my eyes and smiling with an intangible sense of relief, I downed a shot of Cuervo Tradicional.

To life.

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up off my knees

Posted on June 2, 2010 by Emily

This morning on my run, less than ten minutes in, one of my favorite U2 songs, “PLEASE,”  came up on the shuffle.  As I strode along the now-familiar north side of Cooper River, these lyrics struck me:  “So you never felt alive/until you’d almost wasted away.”  It was true; I hadn’t.

It was a hot, humid morning, even at just past six o’clock, haze already gathering along the horizon.  One of those mornings, in fact, when I was seriously tempted to stay snuggled under the blankets, luxuriating in the comfort of our new central air (central what?)  But, as is most often the case lately, I dug deep down into my half-consciousness, and managed to slide that first leg out from under the covers.  Cancer, among other myriad changes, has turned me into much more of a morning person than I ever used to be, and I have come to relish that first waking moment of the day, when I can actually feel the surge within me, the engine of my spirit turning over.  It is the anticipation of the possible, and the simple joy of being.

This morning in particular, there was added determination in that first twitch of consciousness.  Yesterday, I signed up for an 8K run this coming weekend – a distance I haven’t tackled in quiet a long while, and certainly not since the heat of early summer has come upon us.  I am nervous and excited, and feel driven to push myself, even just a bit.  The more I run, the more I feel the competition with myself – and no one else.  There is an urge now, at the end of each run, to empty the tank, to “blow it out,” as my husband says.  At that moment when I feel like stumbling to a halt, my arms sagging at my sides, I reach back and push that much harder.  So, just as I push myself that last quarter mile, I want to show myself this weekend that I can stretch out my distance, crank up my pace, and finish strong.

With all of that in my mind, I set out this morning.  As I ran, I reviewed my performance in the Teal Ribbon 5K over the weekend.  This was my third time participating in the Teal Ribbon.  The first time, May, 2008, I was approaching the end of chemotherapy and had to muster every ounce of strength and determination just to walk the 3.2 miles.  Last year at this time, after pretty limited rehabilitation, I ran/walked (but mostly ran) with my husband at my side, but believe me when I say it was not pretty – probably just over 40 minutes to cross the finish line.

Yesterday, with friends and family around me, I busted out at the starting line feeling strong and ready.  Like today, it was a hot morning, and running without headphones provided an extra challenge.  My friend Andrea, a spunky bundle of energy who ran the Boston Marathon this past April, stayed with me for most of the run, making me laugh and providing much-needed encouragement.  She had been with me for the 2009 run, and as we ran, said simply, “You are a totally different runner than you were a year ago.”  She probably didn’t know it, but that was one of the best things anyone had ever said to me.  For whatever reason, over the past twelve months, I have used my running progress as a measure of my journey away from cancer, a barometer of wellness, and having someone outside of me see the changes and remark on that progress was a colossal boost to my psyche.

About one mile from the end, Andrea busted out, and I finished up, sagging a bit and wanting to stop and walk (but knowing I wouldn’t), on my own.  In the end, I crossed the finish line in about 31 minutes – nearly ten minutes faster than last year – and, perhaps most noticeably, with a sense of delight and accomplishment that was absent a year ago. Last year, I hugged my husband and cried like a baby, still feeling the cancer demons at my heels.  This time, I approached the finish line with a smile on my face, pumping my fists in the air and high-fiving Mike and other friends who were there to greet me after finishing their own runs.  I saw the time on the clock and felt triumphant.  For while I recognize that I am still a slow, maybe even plodding runner by some objective measure, I am, by my standards, heroically unstoppable.

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The “survivor swag” at this year’s Teal Ribbon included, as in year’s past, a lovely little plant.  I haven’t identified it yet (paging Judy! paging Judy!), but I got a sweet little ceramic pot for it, and planted it on Memorial Day, as part of my nightly garden-tending ritual.  I love that I have something green and beautiful as a memento of my accomplishment this past weekend, and to remind me to keep reaching upward, toward the sun, and living.

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small steps, big love

Posted on May 23, 2010 by Emily

Last week, my wonderful friend and gardening guru, Judy, came over to our new house.  It was a saturated, sunless late afternoon, so we were limited to drinking tea, standing in the sun room and surveying the back yard.  I could see the wheels of her mind turning as she scanned the area, thinking of what sort of planting would work in which parts of the yard.  Each time she named another plant or possibility, I dutifully scratched it down.   The months I spent in my old back yard during my illness taught me to understand the healing power of greenery, of planting and sustaining life, and Judy was the person who encouraged and nurtured this love during my darkest hour.

I ended up with an extensive list of potential options, and later in the week, after the rain had finally stopped, I found myself in the back yard, late one evening, as dusk was settling, dead-heading, pulling weeds and turning the soil in the neglected bed that runs alongside our garage.  I re-arranged a few pots that were clearly not thriving in the spots where I’d had them, and the next morning, with the sun actually shining, I believed I could already detect the improving karma.  Then, the next day, Judy emailed me with more suggestions, and I responded by telling her of my efforts the previous evening.  “Small steps,” I reported, ” but I feel like I’m on my way.”

Judy replied, with characteristic pith, “It’s all about small steps.”

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Moving house, finally owning property, settling in – all in the midst of traveling and working, hosting house-guests, planning a housewarming party – has been all about the small steps.  The life that we are building here is potentially limitless, bounded only by our ability to imagine what we want and make it happen.  What I have been feeling in recent days is, in its most basic form, excitement about where these steps might take us.

Excitement, particularly about the future, can be a dangerous and tricky thing for a cancer survivor.  Even now, on the eve of my two year anniversary of completing treatment, I am still wary.  Not as consciously and consistently I was in the immediate aftermath of my illness, but there is that nagging sense of uncertainty that I can never completely shake.  Be buoyant and optimistic, it is as if the voice is telling me, but remember, it could all come unhinged tomorrow.

That may well be the case, but right now, I am telling that pesky voice to fuck off.  Because I am in the now, and life is for living.  This weekend, I was reminded, once again, how insanely true that is.  This weekend I was reunited with two of my fellow campers from Jackson, Bald Fox and Hottie Bucks.  It also provided me with the long-anticipated opportunity to introduce my husband to some of my First Descents family, with completely delightful and rewarding results.  We hosted Bald Fox for the day on Saturday, and then Hottie Bucks joined us for some evening revels, and sitting on our back deck with these three great men, sipping beer, I just wanted to stand on my chair and look up into the skies above me and say, “Thank you, whoever you are, for making me the luckiest, happiest person in the world.”  It just doesn’t get much more alive than that.

First Descents has occupied a huge amount of psychic space for me over the last nine months, and while Mike and I both recognize the tremendous benefit I have derived from this program and the remarkable people it has brought into my life, there have been uneasy moments along the way.  FD has taken me away from home on repeated – and sometimes extended – occasions, and filled my head and my heart with so many souls who are remote and mysterious in the context of my every day life.  At times, it has felt difficult to harmonize the magic generated by my First Descents family with that which I have with my husband.  Needless to say, then, it was heartwarming and gratifying and magical in its own way, to have the biggest and most powerful forces in my life converge, happily, this weekend.

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Part of me feels spoiled.  I have been riding this extended high, seeing disparate parts of my life come together, dissolve into one continuous love-fest.  Yesterday, we started off the day with a 5K to benefit conversation of a local woods, and immediately after, received Bald Fox.  He and I then spent the afternoon criss-crossing the city on foot, dodging brief rain showers by dipping into a bar for an unplanned cocktail.  We laughed and shared stories the way only FD-er’s do, and by night’s end, after many more drinks and laughs with Hottie Bucks and Mike, I felt rather like I had been flattened by a love train – the best and most satisfying kind of exhaustion.  It is still not entirely clear to me what I have done to deserve such profound joy.

What might be most poignant about this species of joy is the darkness at its periphery.  At the end of the day, it is cancer which has brought people like Bald Fox and Hottie Bucks into my life, and the truth remains that we have all been tested and tortured in varying ways.  Theirs are stories that I am still just learning, but the common narrative which we all share makes what they have been through – and what we all continue to struggle with – deeply meaningful.

Ours is an enormous, free-wheeling love, the bonds only getting stronger as we continue to build on the connections which were sparked on a mountain-top in late summer.  There will be many small steps – in our friendship, in our respective lives – along this journey, each profound in its own way, each one magnifying the gifts we have been given.  I have never felt so sure-footed.

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