lucky me?

Posted on May 1, 2012 by Emily

Many weeks ago, as I walked the neighborhood with my new baby snuggled in his Moby wrap, a woman coming out of her car stopped us with a smile.  She peered in at Earl’s tiny face.

“What a beautiful baby,” she said, all sincerity.  She kept smiling as she walked toward her front door.  “Lucky you.”

Those words have been reverberating inside my head ever since.  Luck seems an especially strange concept now, as I consider how life has transformed since becoming a mother, and how that transformation is tied to my status as a cancer survivor.

What is luck?  What is fated? How does one incredible blessing – welcoming a child as beautiful and magical as ours – balance against the curse of what preceded his arrival, and the fear that more cancer may be lurking around the corner?

When I was diagnosed with Stage III ovarian cancer, people would say, “You’re lucky they caught it so early,” when in fact “they” had not.  Even as my treatment progressed and my prognosis improved, it was difficult to understand how my situation could be construed as in any way fortunate.  In those long, dark months, it seemed my entire life had been exploded – any conception of a future, of living fully, was obliterated.

The months unfolded after treatment finished; once the paralyzing depression was brought under control, once joy was rediscovered, and once I saw what was happening to my friends and acquaintances with cancer, the reality of my good fortune slowly asserted itself.  People my age were dying – lots of them.  My genes are wonky, and I’ll be getting colonoscopies like clockwork for the rest of my days (however many of them there are), but once I emerged from the post-treatment darkness, I understood with clarity that this was not my time.

This week marks the one-year anniversary of the death of my friend Sarah Feather, after a prolonged fight with ovarian cancer.  She left two beautiful boys and a devoted husband – not to mention countless friends and relatives.  She was blessed with love beyond measure; for whatever cruel reasons, her good fortune did not extend to her cancer struggle.

Recently, I’ve come into come contact with several other young women battling advanced gynecologic cancers.  I’ve listened to their stories, and shared my own.  From this place, as an ecstatic mother of a beautiful boy, living fully and happily, it feels strange – but necessary – to harken back to the days four years ago when the darkness was all-consuming, when fear ruled the day.  I want to give these women hope, but their fortunes remain unknown.  There is nothing I can do to change that.  As the words tumble forth, as I try to offer consolation, I feel my hands are tied.

As we waited to adopt our son, blind faith was the order of the day.  Any sense of control was illusory.  We turned our trust over to our agency, and hoped that somehow our story, our wait, would connect with a mother looking for the right family for her child.

What has happened for us, becoming parents to Earl, is beyond miraculous.  Was it luck, or something larger?  Did the Fates award us extra credit for having endured cancer, and bless us with a magical baby?  Almost everyone who meets our child remarks on his extraordinary beauty, the intangible aura that surrounds him, the brightness in his eyes.  Cancer deprived us of the chance to make our own child.  Perhaps, then, we’ve been given the chance to love and raise this little boy, as some kind of cosmic balancing of the scales.

Instead of being angry about the toll that cancer has exacted on so many young people and their families (which I usually am), I prefer in this moment to be naïve, and hope that everyone who has confronted the nightmare of cancer will one day know such a reversal of fortune, and be given a second chance to live the life they have long dreamed.

 

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

invisible touch

Posted on February 17, 2012 by Emily

In an unexpected twist of fate, the presence of these writings in the public space of the Internet has revealed deep and difficult connections between my status as a cancer survivor and an adoptive mother.  I owe this in large part to encountering a new voice whose intelligence and insight confirm that some of the most remarkable people are touched by this wretched disease.  It seems a cruel cosmic joke.

My new friend raises the issue of challenges unique to parenting during and after cancer, and decries the lack of resources available to those of us who inhabit this peculiar space.  Her situation differs from mine in that she was just recently diagnosed during the caesarian birth of her second child, and is now faced with raising two children while undergoing rigorous treatment and recovering from major surgery.  Still, even though I am four years out from diagnosis and am now happily parenting my adopted son while feeling fit and strong, I feel that the menacing legacy of my cancer (and the prospect of a new diagnosis down the road, thanks to my HNPCC mutation) connect me to this stranger.  Facing cancer changes everything, including our status as parents.

Invisible Sleeping Woman, Salvador Dali, 1930.

Yesterday, writing to my friend, I found myself stuck on the dual invisibility I now claim, as a cancer survivor and an adoptive parent.  During our wait, Mike and I tended to imagine our eventual child being African-American, in which case the fact of his or her adopted status would have been plain to the world.  We expected to be a conspicuous adoptive family from the very first moment.

Our son, though of mixed racial background, in his first weeks has been identified as “white” on more than one occasion, a fact which has served to mask his adopted status, and has given rise to at least one moment that drew the invisibility of both his story and mine into stark focus.

Earlier this week, we were out at a local coffee shop.  While there, a nosy, chatty woman inserted herself into our space, and asked how old Earl was.  When I said, “5 weeks,” she replied immediately, “You look great.  I guess you just bounced right back.”

I smiled weakly and didn’t respond.  I wanted to say, “Actually, I have no uterus or ovaries, and my son is adopted.  Not that it’s any of your damn business.”

On numerous occasions since I stopped “looking” sick, I have wondered how my cancer history is masked.  I have reflected on the assumptions people make about my health based on my appearance.  It’s the inevitable flip-side, I suppose, of having spent so much time with the fact of my cancer written on my body for all the world to see.  Now the invisibility of Earl’s adopted status is heaped upon the invisibility of my cancer history, and I am left in moments like the one I just described feeling like the person I am doesn’t fit into anyone’s world view but my own.

The queasiness I felt when confronted with a stranger’s assumption that I had given birth to my child (which of course implicates my status as an infertile cancer survivor) may explain why I have balked at the notion of suddenly being part of the “mommy club.”  I cannot suddenly relate to people by virtue of our shared status as mothers; I came to this place along a tortured and difficult road, and cancer looms large in my history and will always be a part of my life as I undergo regular screenings and surveillance.  The unbridled joy of being a new parent is finally mine, but it is laced with an inarticulable poignancy I am still struggling to define.

 

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

mitt romney steals my baby or, adoption anxiety

Posted on February 5, 2012 by Emily

My sister-in-law was in for a quick visit this weekend.  It was fabulous to see her and finally be able to share parenting stories.  For the past eight years, we have watched her raise her own children, always feeling a bit like outsiders looking in.  Now we’re all part of the same club.

The afternoon she arrived, she asked me where things stand legally with our adoption process.  I explained that while our son’s birth mother has irrevocably terminated her parental rights, there is an unknown birth father out there, and that his rights can’t be terminated for another two months.  She asked, appropriately enough, if that was causing me anxiety.

“No,” I said firmly.  “There’s an infinitesimal chance that he would ever find this baby, and even less of a chance that he’d have any interest in parenting him.”

“That’s good,” she responded.  “Because that would be a really long time to have that kind of uncertainty and anxiety hanging over you.”

Flash forward to this morning, when I woke from a vivid dream that featured the emergence of our son’s biological grandparents who (quite unrealistically) somehow managed to interfere with his placement and have him put in their care.  The punch line is that the grandparents turned out to be Mitt and Anne Romney (apparently I am as afraid of the Romneys stealing our country as I am of our son’s biological family stealing him from us), but in spite of the humorous twist, the dream was terrifying.  I cried uncontrollably as my son was handed over to this menacing Guy Smiley.

Mitt Romney will never, ever touch my baby

Once I had coffee in hand, I shared my dream on Twitter – my instant therapy and way of acknowledging the fears manifested in my dreams while also trying to quickly put them behind me.

Leave it to one of my fellow adoptive parent friends to call me on the carpet, pointing out in her inimitable way that perhaps my sub-conscious mind is working over-time and I’d be well-served to spend a few waking moments trying to process my anxiety.

So here I am, not entirely sure what I should be doing, other than acknowledging openly to the universe that I am apparently more worried than I realized about something happening to disrupt our adoption, about some unseen hand sweeping in to snatch our son from our arms.

There is undeniable fragility in our circumstance, but isn’t it simply of a flavor unique to being a new adoptive parent?  There are a thousand other ways in which one’s status as a new parent can be threatened.  Yesterday, a woman reached out to me on this blog, and shared her recent diagnosis with advanced ovarian cancer detected during the caesarian birth of her child.  I look back to the moment of my own diagnosis, and the paralyzing fear that gripped me.  I try to imagine that moment coupled with the one I am in now, as a rapt new parent; the result is a truly incomprehensible cognitive and emotional dissonance.  I think of the woman currently caught in the confluence of these earth-shattering emotions, and I want to scream and cry for her.  But I also want to believe that she will endure them, and emerge on the other side as a super-human goddess of unrivalled strength and wisdom, someone who will light the way for the rest of us mere mortals.

I mention this woman’s situation not to minimize the significance of my own anxiety, but rather to recognize the reality that we are all hanging in a kind of delicate balance, whether as new adoptive parents, cancer patients, or something else entirely.  The question is simply how to muster the grace needed to maintain that balance, how to dance with love and hope in our hearts while embracing the fears that lurk unseen.

 

 

 

 

Posted in adoption, cancer, politics | Tagged , , , , , , , , , , | 1 Comment

a complicated miracle: parents at last

Posted on January 27, 2012 by Emily

Yesterday, a young woman reached out to me on this neglected blog, and shared a glimpse of her own cancer journey.  She was diagnosed with ovarian cancer last fall at age 25, and is currently battling the post-treatment demons that those of us who have endured surgery, chemo and radiation know only too well.  Her words hit me hard, fairly knocking me right out of the blissed-out delirium that has engulfed me since our son, Earl, came into our lives three weeks ago.

Yes: our son.  Our long, tumultuous path to parenthood has finally led us to our child.  We are ecstatic.  But as with most things since cancer, our joy has a unique flavor.

As I read this young woman’s words, I was suddenly no longer a euphoric new parent, holding my beautiful child, singing to him and kissing him all day long.  Instead, I was back in the hospital, plugged in and drugged out, terrified.  I was alone and heartbroken, lost in the daze of my own trauma, months and months after I was declared cancer-free.  With a few words from a stranger, it all came flooding back.

That’s when I knew it was time to start writing about being a parent whose child came to her through adoption and cancer – a mysterious one-two punch that makes me feel like I’m coloring outside the lines of these two distinct communities that I now claim.

It’s been three weeks since I became a mother.  I’m home all day; Earl is asleep most of the time; perfect conditions for writing and reflecting.  But I’ve been stuck.

On what?

I’ve been writing for years about the trials of Life After Cancer, and more recently, about our path to parenthood.  The waiting, the uncertainty, the residual resentment at my wretched disease for making us go through this invasive, unfair process – waiting for some anonymous human being to select us to raise her child.  All the while, I’ve been surrounded by pregnant friends and coworkers.  It’s enough to drive anyone mad.  What perfect fodder, really, for a writer.

So what’s a cancer blogger to do when her dream finally comes true?  The call comes; the chaos begins.  Our baby is coming!  At last!

I could write about the moment when Mike and I first met Earl, two hours after he was born.  I could describe how we walked into the nursery, led by the kind-hearted head nurse, who instinctively folded me in her arms when I began sobbing hysterically as I looked down at his perfect, squirming little body.  I could tell you how the room spun – not unlike the way it did when I first met with my oncologist and she told me about the disease ravaging my reproductive organs.  I could try to explain how for days it felt like my body wouldn’t stop shaking, how every time I gazed at Earl’s perfectly gorgeous face, the tears would spontaneously flow.

But what would that do?  Everyone knows about “the miracle of birth;” every new parent could tell stories about the first time they saw their child, how in love and overwhelmed they felt from that very first moment.

But this feels different, like something more complicated.  Cancer makes our miracle different.

We’ve spent the past year with our adoption agency in a cohort of other young couples, most who have struggled with infertility.  Other than a few same-sex couples, infertility has been the underlying theme motivating these hopeful parents through the adoption process.  While it’s true that I too am infertile, it’s cancer that made me that way.  It’s because of cancer’s affront to my body that I am now Earl’s mother.

Please don’t mistake me for a cancer Pollyanna:  oh, it’s been such a blessing!  My life has changed so much for the better!  I wouldn’t trade my cancer experience for anything!   I am not that person.

What I am is an adoptive parent whose journey to parenthood has been profoundly shaped by the disease that almost killed me.  For that reason, I never want to lose sight of the nightmare that preceded this dream come true.

 

Posted in adoption, fellow fighters, Infertility, Life After Cancer, Writing | Tagged , , , , , , | 1 Comment

four years: a parade of awe

Posted on December 2, 2011 by Emily

Something is changing.  Perhaps it is simply that the passage of time breeds perspective.  But something must be owed to hard work and hopefulness, and the steadfastness of friends and family. 

This past Tuesday marked four years since the beginning of the week that started my cancer journey.  These are dates that will be forever burned in my brain.  This year, though, is the first year that this week completely snuck up on me, not even giving me pause.  This feels significant.

On Wednesday, as Mike and I walked off the train, it suddenly hit me:  “Hey,” I said to him.  “Yesterday was my MRI-iversary. What do you know about that?”  I had been to yoga Wednesday morning, and was feeling energized and happy.  As the significance of the date occurred to me, there was no quickening of my heart rate, no sinking feeling in my gut, no wave of anxiety washing over me.  Just a matter-of-fact recognition of the events as they had occurred, four years ago.

Yesterday, the sense of serenity persisted.   I was out of bed just after 5 AM, brewing coffee, hanging out with my dog, enjoying my Twitter feed.  I watched Bono’s appearance on The Daily Show from the previous night.  I was warm and happy inside my house, feeling snug and secure against the darkness outside.  But I felt the life force coursing within me, making me antsy.  I decided to go for a run.  So on a chilly December 1st morning, I logged 4-plus miles as I watched the sunrise; there are few things more beautiful.

After running, enjoying my endorphin rush, I faced unexpected obstacles as I attempted to get dressed.  I first donned a pair of pants purchased soon after treatment, which now sagged around my waist.  Feeling absurd, not wanting to spend the day hiking my pants up, I pulled them off.  I tried another pair with a mysterious, faint grease stain on the leg, that also suddenly felt weird in all the wrong places.  A third pair, recently purchased and washed, fell oddly around my deformed mid-section in a way they hadn’t before.  I laughed and sighed as the clothes piled up on my bed.  I offered a running commentary to my bewildered basset hound, who watched in confusion.  I felt not so much a deformed, menopausal-before-my-time victim of cancer, but more of a fussy school kid who suddenly hates all of her clothes. 

 A few years ago, this same scene would have triggered so much anxiety, perhaps even driven me to tears.  For what seemed an eternity, I was so furious and despondent about what cancer had done to my body, inside and out.  Not only was I robbed of a chance to give birth to a child, but my weight fluctuated wildly, taking me from emaciated to beefy, seemingly in the blink of an eye.  I felt like a stranger in my own skin.

Thank Whomever for the reclamation that I’ve managed in the intervening years.  Thank the Universe for the miles run, for the downward dogs and the first-ever headstand, the gateway to a reviving yoga practice.  Thank you for the glorious bike rides.  My body is my own again, and not just because I’ve shed some of the unwanted extra pounds.  But because of my strength, my resilience, my love of doing this living thing.

Mr. Potato Head knows what’s up

But the unexpected wonder didn’t stop with the comedy of fashion errors.  Yesterday I also managed to shake of the long-standing Scrooge-like attitude I’ve always had toward our office holiday party.  In years past, I’d eschew the whole affair, feeling over-whelmed by the excess of food, averse to the forced small talk, disdainful of the mandatory cheer. This year, though, perhaps because of the influence of my boisterous and fun-loving new officemate, I decided to try on a bit of holiday spirit.  I even served as her vocal coach as she worked on her lines for a workplace-specific version of “The 12 Days of Christmas.”  (Happy to say, she brought the house down.) “Who is this person?” I asked myself. “And what has she done with Emily?”

In the midst of the merriment, I even spent some time holding and cuddling another co-worker’s one-year-old.  And instead of feeling empty inside, instead of wondering, “Where is MY baby?  When will it be MY turn?”  I laughed and smiled as I patted Patrick’s huge belly.  I tickled his nose and held his little hands, and I just thought to myself, how amazing, this little person.  And how wonderful it will be when I have the chance to hold my own.

The day, filled with hope and light and laughter, ended so perfectly, when I walked out of work on the heels of my beautiful friend who is days away from delivering her own child.  We stood outside in the cooling evening air, waiting for her man to round the corner.  I told her, with love in my heart, how I think about her every evening when I get home. (“Is she OK?  Is it happening now?? AAHHH!”) Her man arrived, and I shared my shpilkes with him, too, and gave him a big hug, knowing that the next time I see him, he’ll be a Dad for real. 

I hugged my friend, too, and as her huge belly pressed against me, I felt the wonder of our friendship mix with the miracle of creation.  These people I love are about to embark on this incredible adventure, and I just felt myself bursting with excitement and happiness for them, and so blessed to be a part of their world, and to have a chance to share in the love.  It felt momentous to be able to separate my own journey to parenthood from theirs, and fully appreciate the magic of what is happening for them.  How powerful to realize, “It’s not about me.”

I can’t even begin to explain why yesterday turned into this ceaseless parade of awe.  I can’t account for how I have reached this place of peace. It’s been hard work, all these years, but today, I felt the pay-off so acutely.  Tomorrow, on the date when I first met with my oncologist and scheduled my surgery, I will gather with my dearest friends, the same people who surrounded me during that surreal weekend four years ago, after my tumor was found but before my cancer was confirmed.  We will drink and laugh as we always do, but I will be sure to raise a glass to them and say thank you. Without what they – and all my friends and family – have given me these past four years, life would not be the delicious mystery which it has become.

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

early thanksgiving

Posted on November 21, 2011 by Emily

My original thought last evening, after rocking out insanely for 13.1 miles, was to simply offer a post of thanks for all of the incredible artists – some of whom I’ve loved for my whole life, some of whom are new to me in recent weeks and months – who propelled me through my second half marathon of 2011.  And I still want to do that, because honestly, the music that coursed through me as I pounded the streets of Philadelphia yesterday was a huge part of getting to the finish line with a smile on my face.  Music has always fed my soul, and for helping me conquer the Philadelphia Half-Marathon, I do need to sincerely thank these amazing musicians:

The Decemberists; Yeah Yeah Yeahs; Florence + The Machine; The Sounds; U2; Madonna; Funkadelic; Eurythmics; Pink; Nancy Ajram; Garbage; Pure Reason Revolution; Black Eyed Peas; Annie Lennox; Crowded House; Kaki King; Oasis; Zap Mama; Adele; AC/DC; Luscious Jackson; Flaming Lips; David Bowie; Talk Talk.

Florence Welch

Special recognition must go to Florence + The Machine, who, like other wonderful things and people of late, came across my radar through the magic of social media.  My husband’s Twitter friend and musical soul mate in The Netherlands recently introduced Mike to this astounding music, and Mike then quickly passed it on to me.  From the moment I first heard “Lover to Lover,” just a few short weeks ago, I have been mesmerized.  I came across a quote from Florence Welch, the main creative force in the act, and when I read these words, it all made sense: “I want my music to sound like throwing yourself out of a tree, or off a tall building, or as if you’re being sucked down into the ocean and you can’t breathe.”

If you haven’t checked out Florence + The Machine, do yourself a favor.  Do it now.

So, the gift of music continues.  I thank the Universe for it every day.

But it is the season, and as we approach the holidays still waiting for the child we want so desperately to love, it seems right to take stock.  It’s all too easy to focus on what’s missing, the family that has yet to be completed, the pain of our wait.  But in my clearest moments, I ask myself: why?

Why cry for won’t I don’t have? Why not celebrate what I do?  It helps no one to view life as an empty vessel, begging to be filled.  In fact, it is already over-flowing with beautiful things.

Yesterday’s 13.1 miles were gorgeous, perfect.   My feet beat a path through a huge swath of the city I love most dearly.  There was pain.  Near the zoo, I almost crapped my pants.  I cursed my feet; more specifically, I cursed what chemo did to them.

I also high-fived the Eagles’ mascot on Arch Street, and a giant chocolate chip pancake at Broad and Chestnut.  People lining the route read my name on my bib and cheered for me.  There was life everywhere.  Mike and I crossed the finish line hand-in-hand.

Next up, 26.2

It could not have been more magical.  And as soon as it was over, I vowed to run the entire 26.2 mile course next year.

Two runners died at the finish line yesterday – young men, gone in a flash after pushing themselves to their limit.  We must never forget how quickly this can all end, for any of us.

California cuties

So I give ecstatic thanks.  For four mind-bending years since cancer upended my life.  For my superb husband, who buoys and supports me through absolutely everything, good and bad.  For my beautiful niece and nephew from California, who lit up our home for a few precious days earlier this month.  For the kind and generous couple from our adoption cohort who have just welcomed a baby boy, and have shown such compassion and concern for our continuing wait.  For my ridiculous basset hound.  For the friends out there, everywhere, like stars in the night sky, always shining their light.

I love all of it, every day.

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

the tampon incident (or, taking back my cancer)

Posted on November 18, 2011 by Emily

A strange and unexpected thing happened the other day:  I made a conscious decision to share my cancer story with someone who had no idea I was ever ill.

Four years ago, my cancer came seemingly out of the clear blue sky.  Ultrasound, MRI, surgery – all in the space of a week.  I vanished from work without warning, and didn’t return until seven months later.  No time to create a cover story, even if I wanted to.  I’ll never know exactly how much information was “leaked” to my colleagues at the outset of my illness. But certainly by the time I returned, pale and bald, seven months later, everybody knew.  People may not know what kind of cancer or surgery I had (once in awhile, people still ask me if I am planning to “have kids,” and to my mind, they are always implying, “the normal way.”)  But they sure as hell know I’m the girl who had cancer.

But four years is a long time in my line of work; turn-over is steady.  This past summer, I started sharing an office with a lovely new attorney.  She’s quick and funny, constantly exuding positive energy.  She’s a total delight.  We’ve chatted a lot over the past few months about our families, partners, and interests, but until the other day, I’d never had occasion to share my cancer story with her.  In a way, it was kind of liberating.  But then, a few weeks ago, I started to realize that in order for me to feel truly connected to someone, in order for them to know who I really am, they need to know about cancer. 

A few weeks ago, a very young attorney from another unit in my office died suddenly of liver cancer.  I didn’t know her, but when the email circulated, and I saw the picture of her bright, beautiful young face, it was like a knife through my heart.  I wanted to cry and spit for this person I didn’t even know.  I knew it could have just as easily been me.

In the wake of this news, my officemate made a few passing comments about the tragedy of this woman’s death.  Strangely – or not – I found myself unable to utter even a word in agreement or acknowledgement.  I felt smothered by the legacy of my own cancer fight, and invisible, because my new friend didn’t know about it. 

The moment passed, but I unconsciously filed it away, thinking about the pros and cons of keeping my cancer selectively secret, especially from someone with whom I felt I was developing a genuine connection.

 Then, earlier this week, it happened: the tampon that broke the camel’s back. 

What the hell is this?

Honestly, it’s hard to believe that in the four years since my hysterectomy, not once had anyone asked me for a tampon

Until Wednesday.

My officemate and another new attorney from the office were going out to lunch.  The new attorney needed a tampon, and my officemate wasn’t finding one in her bag.

“Emily, do you have a tampon?” she asked me, innocently.

My mind froze for an instant.  “A what?,” I thought to myself.  Like I was an alien from outer space being confronted with some bizarre earthling contraption, like a telephone.

I quickly shook myself out of my daze.  “No, I don’t,” I said neutrally.

A minute later, they were gone, and I sat at my desk, feeling awkward and exposed.

I reflected on the ridiculousness of the scenario.  My officemate and I are constantly cracking up; her sense of humor is one of the things I most love about her.  After the initial awkwardness passed, I thought to myself (and imagined saying to her), “OK, clearly I’m not the tampon girl.”

Later that afternoon, prompted by the Tampon Incident, I decided it was time to “come clean.”

“There’s something I want to share with you,” I began, and then matter-of-factly (and only a bit tearfully) told her the story of my diagnosis.  Her response was loving and appropriate, (“Em!!  EMMMM!”), devoid of stupid questions, and totally not weird.  There was no gasping or recoiling, or suddenly looking at me like I was about to drop dead.  I even took her through some old photos, so she could see me bald and gaunt (again, “Emmm!”), and see the hilarious evolution of my hair.  And of course I told her about First Descents.

I explained that I wanted her to know this about me, because it’s a huge part of who I am now, and I didn’t want her to think, in moments like the Tampon Incident, that I was acting weird without explanation.  She nodded and then remarked that she’d thought it peculiar that I hadn’t commented on the young attorney’s death.  “Exactly,” I said, explaining how that news had knocked me sideways.  She totally got it. 

Ultimately, she gave me a big hug, and thanked me for sharing everything with her.   

The rest of the day, I felt liberated and light-weight, like I’d just done something absolutely right for me, reclaiming control of my cancer story.  I was reminded that it’s mine to tell.

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jet lag: a whirlwind trip to planet cancer

Posted on November 15, 2011 by Emily

Last fall, in the aftermath of my GI scopes, I remember coming home from work one evening and flashing back to the “bite blocker” being shoved between my teeth, and feeling like I was an escapee from some kind of horror movie.

What were these bizarre rituals to which I was now subject?  Was I just a full-time guinea pig as a result of my cancer?  Would the poking and prodding and scanning and scoping never end?

I am now a year further into my post-diagnosis journey, and I can comfortably say, no, it will not.  This is what my life looks like now.  If I am interested in staying alive, there is no point in fighting it.  I can be angry and sad all I want; but my life depends on this.  What I really ought to be doing is thanking Whomever for the chance to still be here, getting scoped and scanned on a regular basis, for the chance to try and realize some of my dreams – for myself, for the family I want to build, for the chance to create the elusive “something meaningful” that I hope will be my legacy on this earth.

It feels in a way that I have just returned from a lightning fast journey back to Planet Cancer –a place I no longer regularly dwell.  Like I’ve landed back after a trans-Atlantic flight, crossing the ocean back and forth in the span of a single day, and am wandering around a once-familiar landscape feeling light-headed, disoriented and fatigued.  And nostalgic for something I cannot name, perhaps for an innocence I have lost.

It feels in a way like I’m Superman, returning to life as Clark Kent after some miraculous, world-saving stunt.  Only in this version, the people I encounter in my life as Clark Kent actually know that I am Superman.  They know what I have fought, and endured, and how my heroism has manifested itself.  They want to acknowledge and congratulate me on the remarkable thing I have achieved.  But a moment later, they turn back to their own reality, while I, “Superman,” am left to wonder: What just happened?

There is no way to escape the isolation that accompanies the gown, the IV, the rolling into the operating theater.  It doesn’t matter that no one is cutting into me, pulling something essential out of me (along with the something deadly.)  Once you’ve been to that place, every sterile room, every masked and gloved person, is a reminder of the demons you have already fought.  There is no one who can go there with you.  It is yours alone.

Four days ago, I ran over 11 miles, in preparation for this weekend’s half-marathon.  For just over two hours I ran, strong, steady, unflinching.  Smiling, shoulders back, into the wind that whipped on Veteran’s Day.  I thought about the warriors I know; they are not the ones the day was named for, but they are the ones closest to my heart, so I honored them with each determined stride.  At the end of the run, I wanted to keep going.  I saw a glimpse of just how much further I can push myself, how much life there is in me, how boundless that force is.

As the weekend wore on, as I celebrated the ritual of “Fake Thanksgiving” that marks the annual visit from our California family, I felt the heaviness moving in.  I fought it off, with a glass of wine, snuggling with my niece and nephew, immersing myself in amazing fiction.  I did what I could.  But as Monday closed in, I felt like a deflating balloon, certainly not the same powerful woman who ran all those miles just a few days earlier.  This is what cancer does, even in the abstract, even when the threat is vague and remote.  It casts the entire world in a different palate.  Color drains.

It’s not the scopes, or even the preparation.  It’s no fun to be hungry all day, and spend all night on the toilet.  Honestly, the drugs are pretty sweet, and the whole thing is over before it begins.  No, it’s not the cameras up my arse and down my throat.  It’s what they signify.

It’s the fact that for the rest of my life, I will be waiting for cancer to strike again.  It’s the fact that I can never fully move on from the darkness that crept in four years ago, and which continues to lurk around the edges of my happiness.

So there are these days.  Days when I am catapulted back, pushed down sterile corridors, pricked with needles.

But these days pass.  The darkness recedes – perhaps not completely, but enough to allow the brilliance of the now to shine.

 

 

 

Posted in Life After Cancer, medicine, running | Tagged , , , , , , , , | Leave a comment

the whole story: thoughts inspired by “50/50″

Posted on October 17, 2011 by Emily

I am constantly running up against the thought that it’s time to stop this exercise, that my story is stale.  That it’s time to step aside and let some other young adult with cancer shout to the world – as if there were a finite number of ears to listen to us, a limited amount of psychic space for us all to share.  I mean, a few weeks ago when I visited my primary doctor’s office for a refill on my anti-depressant and to pick up referrals for my upcoming GI scopes, the attending said, “To look at you, you’d never know you were a patient.  That’s how it should be.”  I’m a healthy person.  Isn’t it time for me to stop writing about being sick?

Each day, as I look around me, I see things that I aspire to, that I want to be:  a stronger, more versatile yogi; a mother; a published author; a marathoner; a master gardener.  There is inspiration everywhere; there is so much to do.  There are so many angles to this story, so many chapters yet to be written.

What I don’t see when I look around me is acknowledgement of my experience as a young adult who has survived cancer.  Sure, in my confined universe of First Descents and Planet Cancer friends, I see myself reflected and honored.  But beyond that, in the world at large, not so much.  It’s this lingering sense of invisibility that keeps driving me to try and figure out how to explain my story to those who haven’t lived it, how to tell the whole of it.

With that in mind, I eagerly went to see “50/50” yesterday afternoon, with a survivor friend (and adoptive mother: how grateful am I to have her in my life?)  My pocket-pack of tissues at the ready, I sat down in the darkened theater fully expecting to see some significant part of my experience as a young adult facing cancer reflected on the screen.  But despite some truthful moments, for the most part, it never happened.

I accept and understand that every person’s experience with cancer is unique, but there was a universality that I longed to see on the big screen, depicted in a way that would hopefully make people who’ve never been through it understand the hell we have endured.  I can’t know what the film’s story looked like to someone who has never been diagnosed with cancer.  To me, as a survivor, it was lacking some essential part of our reality.

Maybe a protagonist who actually looked like shit as he went through treatment would have helped.  Joseph Gordon Levitt never appeared gaunt; his skin never took on that unmistakable chemo hue.  He looked like a healthy guy who shaved his head.

what's with the eyebrows? (as in, why does he have them?)

Maybe more than one scene depicting the emotional devastation of his diagnosis would have left me feeling like, Yeah, that’s it.  That’s the relentless pall that hangs over you when you’re in the middle of treatment, wondering if you’ll live or die.

Maybe if the film hadn’t shown Adam clinging to his mother as the anesthesiologist administered his drugs, and then breaking down as he’s wheeled into surgery.  Maybe if instead, they’d showed him all alone, facing a seemingly endless succession of doctors explaining things and asking him to sign forms while his mind, though blank, reeled with the reality that he was staring death in the face, I would have thought, Yup, been there.

I did experience that chill of recognition seeing the aerial shot of Adam being hoisted off of the gurney and onto the operating table; I did cringe as he vomited violently the night after his first round of chemo.  And I certainly laughed out loud many, many times, at the inept and absurd things that the people surrounding Adam did while they grappled with their own fears and demons.

But over-all, at the end of two hours, I felt like there was something vital missing from what the film portrayed.  Yes, it’s largely a comedy, and actually, in its humor, I thought the film and its gifted actors were quite successful.  But in its attempts to show the dark side – the REAL dark side, not some sanitized, palatable Hollywood version of the dark side – it certainly disappointed.

In the end, I’m not so interested in the reasons why “50/50” failed to achieve what I hoped it would.  What’s important, I guess, is why I wanted it to succeed in the ways that I had imagined.

Why do I need the world to understand what I went through – the suffering I endured, the indignities of treatment, the fear of facing death?  I’m almost four years out from my diagnosis; why does it matter?  At least in this instance, someone was trying to tell a story that was resonant in some basic ways with my own.  Do I appreciate that?  Absolutely?  Is it enough?  No, it’s not.

I guess the truth is that my own “alienation phase” has perhaps lasted much longer than I realized.  The feeling of invisibility lingers.

Each day, I have to push back against it.  Today, I had to directly confront my on-going inability to publicly celebrate a dear friend’s coming baby.  (Will I ever, ever get over it?)  Fortunately, there are those (including my friend) who understand, who are brimming with compassion.  But it feels like an endless cycle that I will be forced to repeat, a sense of different-ness that I will be unable to shake, at least until our own baby comes, and probably for much longer after that.

Today, too, I had to bristle, when I heard someone refer to a “real mother.”  As I wait to parent through adoption, the invisibility of my experience as a survivor is compounded by that of my childlessness.  No one can see the void that exists – where the person I was before my illness dwells, along with the child for whom I am waiting.

The good news is, I am getting better at all of it, through trial and error.  I am stumbling my way into defining my new reality honestly, truthfully.  I am working to embrace all of the wretched stuff that brought me to this moment that is so explosive, so full of promise, without having it drag me down, or hold me back.

I am working on telling the whole story.

 

 

 

 

 

Posted in adoption, cancer, Film, Humor, Life After Cancer, Writing | Tagged , , , , , , , , , | 9 Comments

a cat, and cancer’s complicating curse

Posted on September 26, 2011 by Emily

Last week, we put our first pet to sleep.  Gracie the orange tabby was with us for over ten years – through 9/11, our wedding, the arrival of Lucy the basset hound, cancer…the list goes on.  For a few weeks before that fateful trip to the vet, I was gripped with the sense that she was nearing death.  In an odd twist, my awareness of Gracie’s failing health put me in touch with a dormant anxiety about my own precarious state.  As I approach the four-year anniversary of my cancer diagnosis, I suddenly have begun to feel that my time on the clock of good fortune is due to run out.  I am, after all, genetically pre-disposed to other types of cancer.  Cancer has already struck once, and I am only 39.  How much longer can I possibly enjoy my current state of good health before the monster once again rears its fearsome head?

To those whose families don’t include four-legged members, to those who haven’t faced a life-threatening illness, this might seem the height of irrationality.  But the simple fact is, we invest an inarticulable brand of love in those closest to us, and their loss brings our own inherent vulnerability into a blinding kind of focus.  I felt a genuine heartbreak when I kissed our weary orange cat goodbye, and her absence is still acutely felt in our home.  Surely, she was a cat, not a human companion, and the challenge in carrying on after her departure is not of grand proportion.  Nevertheless, something we loved is gone.

Li'l Gracie loved her luggage

As the staff at the vet’s talked me through Gracie’s prognosis, as I watched her shiver on the exam table, tears flowed freely.  I took in the information, and accepted pats on the arm and offers of tissues.  At one point, as I felt my heart swelling with sadness and my tears gathering force, I was gripped by a sudden urge to divulge my own cancer story.  How peculiar, and seemingly absurd – watching my diabetic cat confront life’s end put me immediately in mind of my own tangle with the Grim Reaper.

What on earth would I have said to the unassuming veterinarian, or the compassionate technician?  It’s not like I needed to explain why I was crying.  Surely, this was a scene played out in the veterinarian’s office hundreds of times.  My emotion was nothing new to these people; bearing witness to it is an inevitable part of their job.

How on earth could I possibly have explained to total strangers how my cat’s death called up my cancer fight?  More precisely, why did I feel the need to?

The reality may be that I am incapable of facing the specter of death in any form without it connecting in some way to the legacy of my illness.  The fear, the sadness, the anger – all of it gets called up.  It’s a self-involved reaction, and one that shames me.  I hope eventually to untangle it from the never-ending cycle of life and death that surrounds us all.  It is a universal.  It is not about me.

As I watched my sweet cat decline, I felt the reverberations of my own mortality.  I saw our family lose a beloved member, and figured I surely must be next.  This, I have learned over time, is the unique logical fallacy borne of the cancer experience:  that we, as survivors, are ticking time bombs in a way that those have never faced cancer are not.  The truth, more accurately expressed, is that we, as survivors, by virtue of our own dance with mortality, may have a keener sense of the fragility of the human condition.  It’s an insight we never sought to bear.  Sometimes, when we are forced to say goodbye to someone we love, it manifests itself as a complicating curse.  Fortunately, on good days, it serves to heighten the sweetness that we’re blessed to know.

 

 

Posted in Death, Family | Tagged , , , , | 3 Comments