increasing the happy

Posted on May 16, 2010 by Emily

There are moments – increasing in frequency and intensity – when I am amazed at the depth of my happiness.  The happiness I know now is richer, more substantial, than anything I knew before cancer.  This weekend, not unexpectedly, was a relentless love barrage.  The only things missing were my husband and pets.  (And to be perfectly honest, it was kind of nice not being the victim of feline nocturnal terror for a few nights.)

What was it?  At its essence, it was my first, long-anticipated opportunity to spend a whole weekend taking care of my nephew.  I had imagined this moment for years – an opportunity to do the Aunt Thing full-on.  OK, so we didn’t end up flying kites or dancing on rooftops with chimney sweeps, but it was a gorgeous weekend filled with precious moments that only my amazing nephew knows now to conjure.  Ours has been a special bond since his first days, and the time we spent together this weekend just served to solidify and magnify the overwhelming love I have for him.

Whether baking cookies together, playing duck-duck-goose in the park with friends, having a bath, or reading bedtime stories, we just rocked that special love that exists between aunt and nephew.  It warmed my heart, and best of all, didn’t leave me with that sad, empty feeling that I would sometimes get, in the immediate aftermath of treatment, thinking about the children I will never bear.  As I told one of my new friends from Moab during camp last month, I try each day, now that my heart has had a chance to heal, to think about the things that I do have, rather than the things I don’t.

What I do have, in this moment, is a life that is filled to bursting with love.  As if the magic of so much uninterrupted time with Oscar wasn’t enough, my happiness this weekend was compounded not once, but twice.  This morning, my dear friend Eve and her partner brought their adorable four-month old, Charlotte, over for bagels and coffee.   Eve is one of my oldest and most beloved friends, and she has proven a patient and devoted friend, most recently demonstrating tremendous compassion and understanding as I fumbled through my long-winded explanation about why I couldn’t come to her baby shower over the winter.  I have said it before and I will say it again, Eve is a once in a lifetime kind of friend, the kind of soul I just feel so fortunate to have as part of my life.

So Eve and I sat in the sunshine on my sister’s balcony on this brilliant early afternoon, and has always been the case in our friendship, honesty and forthrightness guided our conversation.  We talked freely about work, life, houses, her new challenges as a mother, the mysteries of children.  When the subject of adoption came up, I found myself uttering words that hadn’t really occurred to me before, but which felt completely true:  “Right now, I am so happy, my life feels so full, that I am patient.  I no longer feel like there is this huge gaping whole in my life where the child I was meant to bear should be.  I just want to increase the happy, and I would really like to do that by bringing a child into our family.”   Sometimes, all it takes is the right audience to help you get to the essence of things.

In saying those words, in having that realization, I was able to tap directly into the life force that is coursing through me, through the people who I love, who enrich my life and bring me joy.  And so, the sky became a little bluer, the sunshine a bit warmer on my skin.  Love will do that.  There has been theoretical talk of 2010 being the year that we start the adoption process, but it wasn’t until I unearthed that insight while talking with Eve that I realized I might truly be ready to try and give this a go – wherever the process may take us.

That would have been enough, really.  After all, there has to be a limit to the good vibes.  At some point, at this rate, won’t I just end up walking around with a deranged smile on my face, eyes glazed over, stumbling like a drunken fool?

But there was more.  Once my sister and her husband returned home, I stepped out for a meet-up with two of my fellow Moab campers, Ceasar and Phoenix.  We met at a bustling Mexican restaurant on the Upper West Side, and later migrated, after grabbing some Starbucks, to a bench on the median at 93rd and Broadway.   There we sat for over an hour, as slightly deranged homeless, disheveled folks rotated through on the bench next to us.  We laughed like lunatics, sharing memories from camp, talking about treatment and support groups and traveling, our homes, our pets, our lives.  Surrounded by speeding buses and taxicabs and tall buildings rather than red rocks and canyons, the energy and magic generated in Moab were undiminished.

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Ceasar, with her blunt, frank demeanor and her enormous heart, is possibly one of the funniest people I have ever met.  The belly laughs we shared in Utah continued this afternoon in New York, as I hope they will for many, many years to come.  And Phoenix, facing a stem-cell transplant eight years after her initial diagnosis with CML, is a fearless warrior who answers the frustrations of her treatment with a determination and unstoppable spirit that leaves me truly astounded.  She climbed the rocks in Utah like a woman possessed, and has recently taken up running with an equivalent zeal.  “Inspiration” is a word I try to use sparingly, but I freely offer it up to describe Phoenix.

After this weekend, it seems appropriate to once again recognize the ways in which my cancer journey has led me to a place of such exponentially increasing joy.  Are my psychic surroundings really that much sharper, in that much greater focus, than they were before my illness?  Do I love people that much more?  Has cancer made me prettier?  Am I nicer?  Funnier?  Are my friends that much warmer, more supportive, more giving?

I can’t quite explain it.  But as I said to Oscar and his friend Noah in an effort to mediate a playtime dispute, “Life’s too short to have a saggy diaper.”

So let’s keep increasing the happy.

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

everything that rises must converge

Posted on May 8, 2010 by Emily

This phrase, from Pierre Teilhard de Chardin, via Flannery O’Connor, came into my head this afternoon as I strolled through my new neighborhood and thought, as I inevitably do, about First Descents.  The words struck me hard, with precision, though I couldn’t say why.   Now, discovering the quote from which it comes, things start to make a bit more sense.

“Remain true to yourself, but move ever upward toward greater consciousness and greater love! At the summit you will find yourselves united with all those who, from every direction, have made the same ascent. For everything that rises must converge.”  From THE OMEGA POINT.

I felt extremely tall walking around today, pulling my stubborn basset hound away from the apparently irresistible scents of these still relatively unfamiliar streets and sidewalks.  I also felt amused.  My mind skips back to various moments from Moab, and it actually feels like my heart is being tickled.  This was true in Jackson, and again true in Utah – there is something about the laughter we generated that is raucous, uninhibited, liberating, essential.  It comes from a place so raw and real, it feels like a tidal wave.  How many times, over those five days, did I find myself gasping for air, grabbing my stomach, folding over in hysterics?  Humor has always been a fundamental part of my life.  I am funny; I married a very funny man.  My friends crack me up.  My dad is a ham.  Laughter feeds me soul, even more so since cancer.

But the laughter we shared over those five days was something else, something about connection and recognition, about demonstrating strength and resilience in the face of a shared enemy.  Cancer may have terrorized our bodies, but our hearts and minds and the laughter at our core remains untouched.

But what of the ascent, and the convergence?  This afternoon, I laced up my sneaks for my first run in exactly three weeks.  In those short weeks, the world has been turned upside down.  Reconnecting with New Orleans, my second home, filled my soul with music, and courage.  I saw how that place of magic and mystery has struggled to remain vibrant, fought its way back to life, and saw my own fight reflected in hers.   I have landed, finally, in my new home, and begun to nest and organize, to try and stake a claim here on this new piece of ground.  And once more, for kicks, I found myself under the knife (just a teeny-weeny knife), being cut one last time in the name of cancer, signifying in some way the end of this portion of my fight.  Finally,  I had my heart jump-started once again by my ever-expanding First Descents family and saw, with renewed clarity, how much living there is yet ahead of me, how much fuller I can make my world each day, as long as I keep my heart open, and fear where it belongs – in the rearview, ever receding.

So I laced up.  The winds have been whipping today – 30 mph gusts are on tap for this evening.  But I needed to go, winds be damned.  The first few strides, I felt like an Olympian.  Ten feet tall, unstoppable.  After a few hundred yards, though, multiple sources of discomfort kicked in.  My trick left knee.  My feet, ever my enemy, feeling like they had been stuffed into running shoes that were two sizes too small.  My sports bra chafing against my stitches.  I was a weary mess.

I sized up the situation, and felt the wind trying to knock me sideways.  I let the Led Zeppelin propel me, and my mind quickly went to my fellow warriors.  The faces and smiles of the people who cheered me on in Moab when I was stuck in the devil’s butt crack on that first day of climbing.  I thought about Fridge and her IT band and her long absence from running, and how she has recently thrown herself back into it with renewed purpose. I thought of Phoenix, ploughing ahead on her treadmill in New York.  I thought of Bear and his endless trail runs.  And with each stride, the pain in my feet decreased, the discomfort in my knee resolved.  Those sweet souls pushed me on, right into the wind, with dust and dirt stinging my skin and my eyes.

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At the end of my almost four miles, it didn’t matter that I had been slow, or sluggish, or in pain while I ran.  What mattered was that I had done what I set out to do, that I had not let the wind or the pain hold me back.  What mattered, in the end, was that I had made it to that one simple summit – four short miles; that I had ascended to the place where I wanted to be today, just for today.

I regret, in a way, the weeks that have gone by without running, without that discipline and routine and determination.  Running has been an essential part of my recovery, and brought me to a place, in Moab, where I was stronger and less afraid than I was in Jackson.  When my discipline fails me, I am frustrated and disappointed.  So for that reason, among others, I am eager to reclaim my routine and continue on the path I have been on for the past year.

Meanwhile, though, I realize that each small step can be an ascent in and of itself.  In Moab, I learned to “hang out” on the rock, look around me, size up my next move, and think about how I would reach the top.  Right now, after today’s small accomplishment, I am cherishing the small steps along the way to the next ascent, and feeling the convergence of those who are on the journey with me.

Posted in First Descents, Life After Cancer, running, Uncategorized | Tagged , , , , , , , , , , , , , , , | 2 Comments

a cyborg no more (or, so long, chest port)

Posted on May 5, 2010 by Emily

This morning, I reported to the Pereleman Center at HUP to finally – almost two years after finishing chemotherapy – have my chest port removed.  This small metal disc with the rubbery center and skinny little tube has been nestled in my left clavicle since February 11, 2008.  (Not that I’ve been keeping track or anything.)  Throughout treatment, it worked like a charm – never once got infected, always allowed my nurses to draw blood without a hitch.  It also spared me and my veins countless needle-sticks which would have undoubtedly left me a track-mark-covered mess (in addition to all of my other treatment-related afflictions.) I’ve heard some nasty stories about these devices, so I certainly feel fortunate that mine proved so agreeable.

Still, I couldn’t wait to be rid of it.  I’d had my abdominal port removed not long after finishing treatment, and I’d a vague recollection of my oncologist telling me, before the ports were placed, that she might like to see me keep the chest one “for maybe a year” after finishing treatment.  But one year came and went quite awhile ago, and check-up after check-up would pass with no reference to it (other than the occasional, “You’re having your port flushed regularly?”)  I eventually began to wonder if she had forgotten I still had it.  You know, so many patients, so many ports – who could blame her for  losing track?

But at my last check-up in March, she finally uttered the magic words – “I think it’s time.”

My chest port and I have had a long and complicated relationship.  As much as I hated what it represented, the fact that it was a constant reminder of my cancer, literally embedded within me, I kind of loved the way it made me feel like a Cyborg, just a teeny bit bionic.  It never caused me any physical discomfort (unlike my abdominal port), and my surgeon left me with the faintest, most perfect, virtually undetectable little scar.  (Heaven knows what it will look like when I pull the dressing off on Friday.)  Sure, it was a pain to have it flushed every six weeks, requiring me to make an extra trip to the chemo suite between my regular check-ups, but it was, in some ways, my own, almost-secret souvenir of my cancer fight.

But it has also been a double-edged sword.  As is often the case, the magical thinking about my little port has cut both ways, as treatment has become an increasingly distant memory.  On the one hand, I have told myself, the port has been my insurance policy against more cancer.  Like believing it won’t rain as long as you carry an umbrella, I have told myself from time to time that as long as I have this sucker nestled inside of me, there is no way I will ever need it again.

Conversely, it’s been a stigma, a nasty reminder, and an invitation for cancer to come on back and give it one more try.  Bring it on, you devious, evil cells.  I am ready.  They can always just plug me back in and start this whole insane dance over again.

Both thought processes are, of course, ridiculous.  But once again, I have looked for order and reason in the chaos that is life with cancer.  Even now, armed with the knowledge of my genetic mutation, there are so many unknowns:  if, when and where cancer will strike again.  We’ll never know, regardless of whether or not I stayed connected to my port for another day, or another year.

So out it came today.  A simple business, all in all, performed with business-like precision by the same general surgeon who placed it back on February 11, 2008.  As I sat in the pre-op area, chatting with my friend who accompanied me, I said to the nurse and one of the many doctors who came to visit me, “Can I have it?”

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Everything seemed to stop for a moment.  The nurse cocked her head, and the look in her eyes suggested she was contemplating calling in a psychiatric consult.  The two doctors looked at each other, like a comedy team.  There was some awkward muttering about having to check with the surgeon.  I looked over at my friend and smiled.  The medical professionals may not have understood – just another example of how much we need to keep educating people about the young adult cancer experience – but my friend surely did.  He had taken me to chemo, walked my dog when I was too tired, and had seen me every ugly, unpleasant step along the way – from diagnosis to treatment to recovery.  Maybe that’s really the only way to understand.

After having my body so brutalized by surgeries and treatment, a quick out-patient procedure under twilight anesthesia is barely enough to give me pause.  Twelve hours after the surgery, and I haven’t even taken so much as a Tylenol.  Nevertheless, the psychic triggers are real, and when I was wheeled into the operating room, even though I was able to stand up and get myself situated on the table, even though I was relatively calm and relaxed, when I felt the frigid air of the OR and found myself staring up at the enormous, sinister lamps, a chill went through me.  The nurse asked if I was cold, and covered me with warm blankets, but the chill went so much deeper.  There was no avoiding going right back to the operating theater on December 5, 2007, and hearing the anesthesiologist ask me where I would like to go  – in my mind, as the drugs kicked in – and me telling him, “New Zealand.”  Imagining the war that was being waged inside my body, and the measures that were about to be undertaken to try and save me.

Two days ago, I woke in the morning from a vivid cancer-themed nightmare.  Prompted, it seemed, by my upcoming surgery, I dreamed that my oncologist told me that she’d found more tumor on my remaining ovary (apparently I have three?) and that surgery would be needed.  More terrifying, perhaps, than the thought of more cancer, was my doctor’s non-chalance, and her unwillingness to comfort me when I became distraught at the news.  Her attitude seemed to be, “Well, that’s just the way it goes.”

Perhaps one day, that dream will come true.  I see others battling recurrences, or cancers that don’t respond to treatment in the first instance, and I am continually amazed.  It’s difficult to know how I will fare, if and when that time comes.

But I cannot dwell there.  I cannot, because today, for the first time in over two years, my body contains nothing but 100% all natural Emily Morrow Beck.  Parts of me are gone, but there is no longer anything foreign lurking under my skin.  Finally, I am once again me, unadulterated.

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

first descents, take two: a boundless blessing

Posted on April 27, 2010 by Emily

Three days ago, I unpacked from a week in Moab, Utah with First Descents.  Tonight, I should be packing again, but instead I am sitting in my pajamas, fumbling with words.  It’s overdue.  It’s late, and I am tired. Back to the airport first thing in the morning.  But I owe it to everyone.

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There will be hundreds more words, at least, after these.  But I have to start somewhere.  Re-entering felt a bit more  seamless this time.  My life has been chaos for the entire month of April.  Moving house.  Climbing rocks.  Heading home to New Orleans.  Somewhere in there, I still have a job, a marriage, pets and legs that really want to run.  I picture myself running along the Mississippi tomorrow evening before dinner, and my heart aches with happiness.  There is something so essential in New Orleans, something that I am about to plunge head first into, and I am ecstatic.

But first.  First.  First Descents.  What happened?  Then, now?  What is this cycle that I am caught in?  The best I can do in this instant is try to measure time.

Eight months ago, camp in Jackson took my breath away, knocked me sideways.  I wasn’t ready, had no idea what was coming.  There was reluctance, skepticism, call it what you will.  I ran head first into something so much bigger than me, something about the essence of living after cancer – rebuilding, reclaiming.  I see now that the day I arrived in Jackson in late August, 2009, I was not really a whole person.  There were fragments of me – I was in pieces, left shattered after my illness, looking for something, anything, to help put me back together again.

Before First Descents, it never would have occurred to me that there was still so much life left in me – that I was funny and fierce and strong – so unbelievably strong.  I had no idea.  I was still so afraid.

So Jackson lit a fire, pushed me over the brink.  At the bottom of my first rappel, I cried like a two year old – I didn’t even know why.  I just remember leaning back against that rope, Jenny Lake over my shoulder, endless air all around me, and thinking, This is it.  I am free-falling; there is nothing to catch me.  Nothing, of course, but my own courage, and this unending net of love and support from my fellow campers and survivors, the people who knew my struggle.

Then, the aftermath.  As I like to say, Anything and everything for FD.  And so it has gone.  Some writing, some interviews, some speaking engagements.  If you get me started, I will never shut up.  I may not be the world’s greatest rock climber, but I can talk incessantly about how First Descents taught me to live again.

I see now that what happened to me in Jackson enabled me to regain control of both my body and my spirit. There is no way I would have become committed to running the way I have without my FD experience.  I never would have thought I had the stamina or the focus or the discipline.  In some way, I feel I would have remained trapped in the version of me who couldn’t climb stairs or stand up for five minutes in the shower without dissolving into tears.  All of that resilience I owe to First Descents.

To be quite honest, going into Moab last week, I was a bit apprehensive.  Could it be that way again?  Having already been so transformed in Jackson, what was left?  This time, I already knew how to rappel.  I knew the feeling of falling.  I knew something about how to maneuver my way up an ornery, sheer rock face. I feared I would miss my Jackson family.  It seemed impossible that the kind of energy we shared, the connections we made, all those months ago, could be replicated.

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But it was.  Moab was something else.  An extension, a continuation, an unexpected sequel, allowing me to to measure the journey I have been on over these past eight months in stark, tangible terms.  My body felt different – leaner, stronger, more assured.  My confidence had grown, my humor reasserted itself after so many dark and tortured months.  Still, while I had the benefit of a microscopic amount of previous climbing experience, being confronted once again with the physical challenges and the emotional exposure left me, at the end of the week, poured out yet invigorated, drained yet energized.   In hindsight, all those months ago, I thought First Descents signified the end of my cancer recovery – the moment when I reached the literal mountain top and saw all that I had overcome.  After Moab, I see that it was just the beginning.

Eight months ago, I talked about feeling like a lovestruck teenager.  It’s happened again.  I have carloads of new family.  I have laughter and tears and embraces that feel like nothing else I have ever known.  It is a boundless blessing.

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

they won’t go gently

Posted on April 14, 2010 by Emily

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My head is in a fog of allergies, moving and other assorted chaos – both internal and external.  We are finally in our new home, and I am ecstatic.  After just the first few days, life in the swamps of Jersey feels perfect for me.  All of those dark, irrational thoughts that gripped me over the winter – I can’t leave the city!  It will forever and irrevocably change my identity if I leave the city!  I will grow another head!  My skin will turn purple! – have proved baseless.  I miss my wonderful block, but not much else.  I can see stars at night.  I can run along the tranquil paths of Cooper River in the morning as the fog is lifting and the birds are chirping.  And to top it all off, I can walk five minutes to the train and be in my office twenty minutes later.  The good life.

Amidst all of the packing and wrapping and organizing and breaking down and disassembling of the last few weeks, I have almost forgotten about cancer for the first time since my diagnosis.  I have been caught up, propelled forward, buzzing with anticipation and excitement and stress and aggravation and confusion.  I’ve spent days not knowing where my socks are, or where to find a coffee cup.  When our pooch woke up on our first morning in the house, she clearly didn’t understand where she was;  neither did I.

But it’s been brilliant.  I feel optimistic and energized.  It feels like anything is possible.

Then, two nights ago, as I visited Planet Cancer for the first time in a few weeks, I came across a heart-wrenching and typically humorous post from one of the most precious souls to ever walk this earth.  It doesn’t matter that I have never actually met him: I know this.  A little over two years ago, we connected on the Planet – sharing stories of our respective nephews (with whom we were both equally obsessed).  I told him I would love to help him and his partner adopt a child (he expressed concern about the possibility of a gay couple adopting in his home state of Texas.)

It doesn’t matter that I have never met him; the light that radiates from him is palpable, the love that he generates simply blinding.

And now, it seems, he is preparing to die.

It may not be tomorrow, it may not be in the next few months, but he has been dealing with multiple and on-going recurrences of acute lymphoblastic leukemia for over a year, and from his latest writing, it seems like he has reached the point where he has to make a decision about quality over quantity.

So he offered this epic post, and reading it was like open-heart surgery.  I could barely breathe as I read his words, followed his thoughts – from the darkest, loneliest, scariest recesses that any person can ever know, and back out into the light of day, where his humor and brilliance and compassion shines so brightly.  I was so dumb-founded, I couldn’t even cry, or offer a meaningful comment in response.  I just told him that I loved him.

So, just like that, cancer knocked the wind out of me.  For the truth is, even for those of us who are fully alive in our post-cancer lives, those of us who can work and run and travel and take a shit without screaming in pain, cancer still shrouds our existence. Even now, when I am filled with so much good feeling, as I am preparing to head off on another First Descents adventure, and soon after to return to my second home for Jazzfest, cancer can pick me up my the scruff of my neck, hurl me across the room and knock me senseless.

I have grown attached to and come to love so many amazing people since my diagnosis, and I have yet to lose any of them to this disease.  But when I read my friend’s words the other night, it occurred to me with painful, stark clarity that the day may not be far off when it comes time for me to mourn.  So many others have already lost people, and so many people are fighting with everything they have left in them – even if they don’t feel like they can.  They may be tired and hopeless and “ready to die,” but at bottom, they are still young people who deserve to live.  There is endless fight in them.  They will not go gently.

I read my friend’s words, and I wondered why I do this.  What can I possibly say?  The real wisdom, the real insight – what we all need to hear, but are afraid to – is being whispered and shouted by those of us who are at the precipice, waiting to show us the way.  Right now, all I want to do is sit quietly and let their voices be heard.

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

the very essence of me

Posted on April 4, 2010 by Emily

You know you are a dedicated blogger when, after puking your guts out at 2 AM, you think,  “This is going to be great material for my next post.”   Welcome to my world.

I will spare you the details of said puke-fest.  Suffice to say that it was the end result of some prolonged poor dietary choices (clearly one of the things I hate most about moving is the inability to prepare my own food), combined with an ill-advised decision to “finish off” the last of the Bailey’s over ice.  (Sure, it’s one less thing to pack, but was it really worth it?)   As I crouched on the bathroom floor, I thought about my beloved Jeff Bridges’ great puking scene in CRAZY HEART, but I also thought of recent noteworthy hurls of my own:  in a taxi coming home from the fertility doctor, just weeks before my diagnosis; after ingesting a little too much Vitamin Water after my first surgery; and of course, following my first round of chemo.

It shouldn’t come as a surprise, then, that once I found my way back under the covers and mopped my brow with a cold washcloth, the tears just started.  These are a new species of tears, the post-cancer variety.  It’s almost a part of my breath; the emotion comes over me, and I exhale the sadness, the fear, all of it.  It feels like shit, but there is an inevitability to it, and also immense relief.

I’ve written before about my PTSD associated with any kind of physical ailment.  I am so enamored of my health now that any time I start to feel the slightest deviation from my standard of wellness,  I get wiggy.  So, as I was writhing in bed, battling my upset stomach and sipping seltzer before the puke finally arrived, I thought, “Well, here’s my cancer again.  Back for more.”  I hear the litany of questions my oncologist asks me at every check-up:  “Any nausea, vomiting, shortness of breath?”  OH GOD!  VOMITING!  Once you have been touched by cancer, it’s hard to accept that there are countless other reasons why your body might be out of whack.

I also heard the voice of the GI doctor I met with at the genetics clinic a few months ago, the one who so reassuringly told me that even though my CA125 is normal, there could still be other, undetected cancer lurking inside of me.  Hence, the need for colonoscopies and upper endoscopies to screen me for the stomach and colon cancer for which I am now at increased risk.  Flash forward to October (if I am still alive then, of course), when I report for my first endoscopy only to learn that I have Stage IV stomach cancer and only weeks to live.

This is not the way my mind normally works.  But right now is not a normal time.  Right now, I am living between houses – packing up my life in the city and painting rooms in New Jersey.  Entertaining my sister-in-law and her two kids and preparing for my parents to arrive tomorrow.  I am fantasizing about my new home, the plants I will grow, the art I will hang, the meals I will make, while at the same time feeling a deep sadness about leaving the community that we have been a part of for the last four years.

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I remarked to a friend a few weeks ago, while discussing this huge transition, that cancer has made me decidedly less sentimental.  And it has.  Before cancer, the state of flux in which I am currently living would have left me unnerved, rattled, anxious.  I could see myself weeping at random while packing up boxes and taking down pictures.  There was in me, before cancer, this peculiar need to assign meaning and significance to my external surroundings that would always implicate the very essence of me, who I saw myself being.  Changing circumstances, moving, uprooting, would often leave me wondering, Who am I supposed to be now?  What’s going to happen to me, now that I am in Chicago instead of Philadelphia, or New Orleans instead of Chicago?

One of the unexpected blessings of cancer, and having survived its wrath, has been the realization that the certainty, the center, is within me.  It does not change with my surroundings.  It does not reside in a particular zip code, or within a city’s limits.  My strength, my energy, my life force, is the constant that drives everything I do.  It is nurtured and sustained by the people and places that I love, but it does not waiver.  It knows no bounds.

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I’ll freely admit that I am sad and indeed a bit torn about the move we are making.  It feels like giving something up, like turning away from something – urban life, our wonderful block.  But the larger part of this moment is about moving forward, making something new, something that is ours.

The other night, my sister-in-law asked me, rather apologetically (“I hope this isn’t an inappropriate question”), whether there was a part of me that was glad to be going somewhere new, “starting over,” after everything I have been through with my illness.  It was a perfectly reasonable question, and I answered, honestly, “Absolutely.”  For the garden which I love so much and which I am so sad to leave was also a den of piercing solitude for me during endless Spring days, when all I had was a New York Times crossword and an Ian Rankin paperback to distract me from my fear of dying.  And the TV room where Mike and I liked to cozy up and watch the latest episode of CAPRICA is also the room where I slept when I came home from the hospital after my first surgery – where I woke up in the middle of the night in terror, with images of my insides being ripped open searing my mind.  We exorcised the cancer demons from this house about six weeks after I finished treatment, but the truth is, the ghosts can never  be completely erased.

So I will embrace the poignancy, the ambivalence, the mixed feelings of these last few days of our life in the city.  Just as I will embrace the blank canvas that stretches before me in this place that we will truly make our own.

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does my cancer offend you? tough s*&#!

Posted on March 31, 2010 by Emily

I generally don’t spend much time reading random comments from anonymous folks on the Internet – in response to blogs, news bits, whatever – but today, I took a peek over at my ovarian sister Donna Trussell‘s latest cartoon, and was downright astounded by some of the comments it provoked.

First, the cartoon:

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I have to admit, when I first looked at the cartoon, I didn’t get it.  Sometimes, my brain just doesn’t grasp meanings that are plain as day to other people.  This is the same cognitive quirk that caused me to have to take the bar exam three times.  So, I looked at this image, and first I thought the couple facing us were talking to each other, not the person in the cap with a giant hole in her (him?)  I saw the cap, and thought, is that a surgeon?  I thought the woman with the hair was the one with cancer.  I just didn’t know exactly what I was looking at.

Plenty of other folks, apparently, did, and had lots to say about what they saw.  I quickly scanned the comments, and should not have been surprised to see that this simple cartoon caused people to go off on all kinds of tangents about health care reform, Iraq, Bush, Obama (one person even went so far as to refer to our President as “the cancer in the White House”) and the appropriate ways of managing your cancer in public.  Spend five minutes reading comments like this from a cross-section of semi-literate Americans, and you will quickly see what a totally fucked up world we live in.

One comment in particular riled me.  Here it is:

My mother-in-law survived two bouts with cancer – lung and brain – and never once felt the need to run around with a bandana on her bald head. She wore a wig, kept this personal health matter to herself, and never felt the need to demand unsolicited sympathy from strangers.

Wow.  I mean, just plain WOW.  Let’s skip right past the oxymoron of “demanding unsolicited sympathy.”  First, I am fascinated to know what is going on in the mind of the person who looks at this cartoon and chooses to focus on the bandana – which I first interpreted as a surgical cap.  Second, how exactly does this person propose that cancer patients “keep their personal health matters to themselves,” and why exactly is that a more appropriate response to this wretched disease than being open about it?

Hours after reading this comment, it continued to irk me.  I thought about it while I walked the dog around the neighborhood on this glorious, sunny evening.  What is going on with this person?

It occurred to me after a moment of reflection that what’s going on is that he/she is made uncomfortable by the fact of someone facing cancer – a loved one, a stranger, whoever.  In this person’s mind, then, when I went to Wegman’s with my bald head and my yellow Livestrong bracelet, with my shorts falling down around my knees because I had lost so much weight, I was being disrespectful of other people’s right not to have to deal with the fact that people get cancer.  I am kind of wondering if that right is some kind of weird inverse of the right to privacy inherent in the Due Process Clause of the Fourteenth Amendment.

So, I guess I would like to take this opportunity to apologize to all of the hundreds of people I came into contact with during my illness.  All of the people at Phillies games and restaurants and shops and the gym who had to be confronted with my bald head, my pale skin, my Bob Geldof in “The Wall”-esque lack of eyebrows.  I am just so sorry.

I don’t usually resort to out and out sarcasm in response to ideas that I find totally repugnant, but it somehow just seems so appropriate in this context.  The truth is, choosing to be a bald chick during cancer was, I guess, a conscious choice, but mostly because I just didn’t have the stamina or  the desire to try and devote what little energy I had to trying to make myself look like something other than what I was.  I have never been much for makeup.  For me, with rare exception, it’s always been, “What you see is what you get,” and I wasn’t about to change my philosophy of personal appearance just because I was sick, and certainly not to try and shield the world around me from the reality of my illness.

During much of treatment, with cool hats and scarves and a heightened appreciation for accessories (long live big chunky earrings!) I was able to maintain a certain sense of style and dignity that was consistent with how I have always presented myself.

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By the end of treatment, though, it became increasingly difficult to obscure the ravages of chemo and I freely admit that by June 11, 2008, I was looking downright ghostly.

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I get that cancer is scary.  I really do.  But what I don’t understand is someone who thinks that people who opt not to try and mask the toll which it takes on their physical appearance are “demanding unsolicited sympathy from strangers.”  On the contrary, one of the things that so enraged me when I was sick WAS that very unsolicited sympathy – the slightly tilted head while asking, “How ARE you?”  Or just plain pitying looks.

I can’t speak for all cancer patients, but for me, the hardest part of being sick was just trying to engage in daily activities without constantly confronting my disease.  And I can’t say for sure, but I bet what I went through is a damn sight more unpleasant than having to look at some bald chick wearing a bandana.

The funny thing is, no matter what I look like now, I still had cancer.  I still have the HNPCC genetic mutation.  I am at increased risk for other cancers.  And that’s a reality that all the curls in the world will never change.

Photo on 2010-03-31 at 19.12

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dear nurse sarah (and co.): thank you for saving my life

Posted on March 23, 2010 by admin

Before I am completely buried under the growing piles of boxes that surround me, before tomorrow comes along and sweeps me up in one work drama or another, I need to take a minute and offer some thoughts on yesterday’s three-month checkup.

As I sat in the waiting room yesterday morning, paying particular attention to a very young woman seated across from me, I tried as always to concentrate on my book and tune out the televised blatherings of Good Morning America. Then suddenly I looked up and saw a familiar, smiling face. It had been almost two years since I’d seen her, but I felt an instant rush of affection and recognition. NURSE SARAH!
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My team of caregivers was an extensive and ever-changing crew – headed, of course, by my fearless gyn-onc Christina Chu.  But Sarah, a supremely compassionate, gifted and funny nurse practitioner, was with me from my first in-patient chemo in February to the last one in June.  I loved so many of the people who took care of me, but secretly (and now, not so secretly) Sarah was always my favorite –  one of those special people who you meet in a shitty circumstance (i.e. while being treated for cancer) and think, “Wow, you’re so cool.  If I met you outside of Cancerland, I would totally want to hang out with you and be your friend.”

So it was with surprise and delight that I spied Sarah in the waiting room yesterday.  She greeted me with a huge, warm hug, and sat down with me to check in and see how I was doing.   She commented repeatedly, her eyes wide with glee, on how fantastic I looked (nothing a cancer warrior loves to hear more; cancer has, in fact, made me far more vain than I ever thought I could be), and asked after my husband.  I told her about the recent news of the HNPCC mutation, the lingering neuropathy in my feet and my adventures as a runner.   She cheered the news of our impending move to South Jersey (where she, too, lives) and gave me another great big hug before heading back into the exam suite.

I waited for a few more minutes after our encounter before being called back for my appointment, but suddenly my heart was so much lighter, my nerves so much calmer. Seeing Sarah, remembering the condition I was in when we were last together on Silverstein Seven, and having her react to me in the here and now with such utter delight and positivity – it just lifted me up, made me that much more aware of the triumph that is my life.

Not surprisingly, the checkup was – as weird as it sounds – almost pleasant, and filled with good news: I can finally have my chest port removed.   I have finally graduated to checkups every four months instead of every three.  During the course of my conversation with my doctor, I found myself being more assertive and proactive with my questions and concerns – something I continually strive to do.   And today, one day after my visit, I got the call – which usually takes weeks – that my CA125 is normal (which I knew it would be, given my recent clean CT scan, but it’s always nice to hear.)   Of course, I attribute all of this good momentum to my encounter with Sarah.

Maybe it’s because the two year anniversary of finishing treatment is approaching, but after yesterday, I find myself feeling a touch nostalgic for the people who saved my life. It surprises me to realize how easy it has been to lose sight of them.   I see my oncologist often, and I love her firm handshake and the way she always apologizes for the cold speculum, but the truth is, while she is the one who cut me open and removed my cancer and set the course of my treatment, there were dozens of people without whom I never would have made it.

So to them, right now, I just want to offer a heartfelt – and never-ending – thank you.

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possibility and promise

Posted on March 21, 2010 by Emily

Yesterday, I spent a little time in the garden, pulling out the remaining dead growth from last year.  Although I will no longer be tending this garden, I wanted to make sure that all of the living things that are getting ready to burst out of the earth have the best chance for a glorious, colorful and healthy Spring.

This garden was an oasis during my illness, when I spent every possible moment outside, tending to the living things all around me.  It made me feel less dead, less a helpless victim of cancer, to know that I was working to sustain life – and not just my own.

It feels poignant, but also somehow very right, that the time has finally come to say goodbye to this haven, this place where I was so often alone with my thoughts and fears, the place where I struggled to find a flash a beauty, of color, amidst the bleak pallor of cancer.   We are packing up this house, and leaving this soil to the next tenant, and preparing to move on to a wholly new place, a place that is ours entirely, and where cancer has not had a chance to take root.

Almost two years after cancer, preparing to move into the very first home I have ever owned finds me exhilarated and optimistic.  I recognize that after having endured cancer, there is very little that I cannot handle, and the short- term chaos of the next few weeks is just a necessary hiccup as we move into the next chapter of our lives.  It is a story that will always and forever be shaped by cancer, but for the first time since my diagnosis, I can finally feel possibility and promise in the air.

This feeling is especially critical at this moment, the eve of my three-month check-up. Having just received the news that my CT scan from January was clean and clear, this time around I am somewhat less irrationally afraid of hearing that my cancer has returned.   Still, it’s never something to look forward to.  Fortunately, this weekend  has provided an early taste of Spring and summer, so I feel ready to face the stirrups, the scale and all of the other minor forms of unpleasantness that await me.  Rain will fall tomorrow, but my heart will be filled with the sunshine I’ve been able to absorb these past few days.

Yesterday, I ran my first real 5K “race.”  I did it with Mike at my side, on unfamiliar roads near our new neighborhood and finished with a personal best time.  It was thrilling and energizing, and left me so invigorated that I was determined to run again this morning (even though I never run on consecutive days.)  I went out at 9 AM, and logged 5.79 miles.  Each day, each run, is another small triumph as I seek to prove to myself that my body belongs to me, not to cancer.

I was a little nervous before the race yesterday, and shared my anxiety with Mike.  I imagined all of the hard-core runners with their 0% bod fat logging their 4 minute miles, finishing the whole course in fifteen minutes.  I saw myself through their eyes – fat, slow, out of shape, thinking, “What is SHE doing here?”  But as Mike reminded me as we drove toward Haddonfield, those people don’t know what I have been through. And the only person I am competing against is me.  Which is exactly what I did, and exactly why it felt so good to know that I had run my best time.

Then last night, after a long, wonderfully productive day (we did a good bit of packing in addition to running and buying the obligatory case of beer to help us through the next few weeks), we sat down to watch our one TV show (CAPRICA.)  But before we cued it up, Mike unexpectedly started running some of the videos which we made during the course of my treatment.  I had watched them all at the time they were made, but haven’t often looked back at them.  It was startling then, to see myself in the final video, from June of 2008, after four months of chemo, and realize how ghostly, how poured out I looked.  I look at my self now, and see my strength –  and my wild hair – and I don’t see a trace of the shell that I became during treatment.  To look back like that, though, is an invaluable exercise.  It re-enforces, in such a stark way, the insanity of what I went through, and the miracle of the journey back.

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Photo on 2010-03-21 at 16.11 #2

Earlier this week, at the dog park, on a day with a faint chill in the air, I spotted a young woman with a baseball cap covering her bald head and a scarf tied around her neck. She wore a yellow sweatshirt which hung loosely on her slight frame.  She smiled and played with her dog, but there was no doubt from her appearance what she was going through.  Beyond her baldness, and her slender build, I saw in her eyes, in the brief moment we exchanged a glance, the sadness and fatigue that comes only from facing cancer.  I wanted, in an alternate universe, to approach her and say something -anything – to let her know that I understood.  But then I remembered how I felt when I was her – bald, weak, with the eyes of the neighborhood always on me  – and I thought better of it.

If I could have, I would have told her that the nightmare will end, that one day she will know strength, and health, and that she will once again be able to feel the possibility and promise all around her.

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the lynch syndrome, with apologies

Posted on March 14, 2010 by Emily

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Some things are just plain unexpected.  Or are they?

Yesterday, when the rain-soaked mail fell through the slot in the front door, I discovered a thin envelope from Penn GI Genetics – far too thin to be the packet of materials I was told would be coming my way within the next few weeks (do I get a membership card for the HNPCC club, I wonder?)  It was addressed to “Mrs. Emily Beck” (HA!) in small, tight handwriting, the letters smudged from the moisture.

I opened it up, and found, not entirely to my surprise, a typed note – not on letterhead – from the genetics counselor on whom I unloaded last week when she delivered the news of my test results.  It was not, as I have mentioned previously, the test results (which were expected) that had me worked up, but rather a month’s worth of simmering anger over the lack of humanity which I felt the genetics team displayed when I met with them.

The letter, then, was the counselor’s attempt to apologize for (what I characterized as) failing to consider the emotional impact of a cancer diagnosis  – not to mention the now-confirmed increased potential for more cancer down the road.  It was a “teachable moment,” I guess, and presumably she shared my comments with the other members of her team.  My original motive in communicating my displeasure to her was to simply unburden myself of this ill feeling, but now, I am wondering if perhaps, in some small way, patients who visit the genetics team in the future might be approached with just a bit more compassion.

In other news, my recent post generated a reply from a woman named Linda who is affiliated with a group called Lynch Syndrome International (which to me sounds like a spy movie staring Matt Damon.)  The group is dedicated to increasing public awareness of the HNPCC mutation, and encourages people to be familiar with their family medical histories and, if appropriate, to be screened and tested for the gene. So I just wanted take this opportunity to say HURRAH for Linda and her crew, one more battalion in the war against stupid effing cancer.

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