ghost child

Posted on January 12, 2011 by Emily

Image courtesy of Kelly Moore

This evening as I was leaving work, one of my colleagues, who was my office-mate when my nephew was born six years ago, asked me how he was doing.  Actually, her exact words were, “How’s my man doing?,” and I instantly knew who she meant.  A huge smile crept across my face as I thought about him, his crazy antics, his growing mind and spirit and just how much I love him.

“He’s great,” I told her.  “I’m actually going to see him the week after next and go to his school to read a story to his class.”

“All right!,” my co-worker exclaimed.  “Give him a hug from me!”  She’s never met him, and she doesn’t know much about my life, but one thing she does know is that I am one seriously devoted aunt.

Moments later, as I stood waiting for the elevator, my mind, while still filled with happy thoughts of nephew, turned to my ghost child.

My ghost child haunted me pretty actively in the immediate aftermath of my hysterectomy and cancer diagnosis.  Everything happened so suddenly – there was no chance to process the emotional impact of losing my fertility, much less freeze eggs or any of that other good stuff.  As a result, in the first weeks and months following my diagnosis, I could do nothing more than suffer unexpected swells of grief for the child I would never bear.  These suffocating moments were a defining part of my early cancer experience, and were made all the more painful by the pharmacological assault of chemotherapy and hormonal nightmare of menopause – a devastating one-two punch.

Time heals all wounds, or something trite like that.  Too many tears to count later, and here we are, over three years on, preparing to adopt.  Next week, our social worker will come to our home for the first time.  It’s still impossible to know exactly when, but this is going to happen.  We will have a child.

My connection with my nephew is based on so many things:  birthdays two days apart; religiously regular contact; a shared love of the absurd; genes.  It’s the last bit that trips me up.  Before cancer, my husband and I – like most people, I suspect – talked about the “Bubz Junior” we would produce:  some quirky, completely delightful miniature combination of us both.  We never imagined a boy or girl in particular, but I think it’s safe to say that we both imagined having a child in whom we could see some essential part of ourselves reflected.

Our ghost child still visits me every once in awhile, like today, but without the same paralyzing force.  The grief is more muted – perhaps he or she is receding, pulling further and further away from the reality that was supposed to be into a place of peace.  I keep seeing a preview for this wretched looking film, Rabbit Hole, about a coupling dealing with the death of their toddler son.  It’s a subject many people can relate to.  It’s almost impossible to imagine the same film being made about a couple grieving for the child they could never have.

Periodically, I dream of being pregnant.  I had one of those dreams a few nights ago.  As in most dreams, logic was completely absent, reality distorted.  I’d been through my cancer, but was somehow still going to carry a child.  I found myself in a doctors office with a group of women who were all going through fertility treatment.  In the exam room next to me, a woman in labor screamed in pain.  I was terrified of going through the same thing, but was also amazed at the miracle of my pregnancy.

I attribute these dreams to my ghost child; I suspect I will have them for the rest of my life, even after we welcome our adopted child into our family (perhaps even more so at that point.)  There is real terror and confusion in those subconscious imaginings, but waking from them, and remembering how far I have come, provides a renewed sense of gratitude for what I still have, and what is yet to be.

Posted in adoption, Family, Film, Infertility, Life After Cancer | Tagged , , , , , , , , , , , , , , | 2 Comments

echo chamber

Posted on January 9, 2011 by Emily

Words have never come with greater difficulty than they have in the weeks following the death of a fellow young adult cancer warrior with whom I shared an essential but hard to define connection.  I didn’t know her well, but her passing has had an unexpected, lingering resonance.  I am struggling to define what has had me rattled, and why.  Most of all, I am wary of making her death all about me.  As I attempted to memorialize her in my last post, I very consciously omitted anything that would take the focus away from honoring her and place it instead on my own sense of sadness and relived trauma.

Life is marching on here in the frozen first days of 2011, and because I want to live as fully and fearlessly as Chris encouraged us to do, I feel some powerful need to try and define and hopefully vanquish the demons who have been reaching for my heels, trying (and mostly failing) to pull me down into an abyss of haunted memories and paranoid imaginings.  I owe it to Chris – and myself – to shake this bastard loose.

Chris died just after Christmas.  A few days later, New Year’s Eve arrived, and I threw myself into revels with our nearest and dearest friends.  The evening had begun quite unexpectedly with a chance encounter with an old friend I hadn’t seen in over 15 years, and the warmth of her hugs and good wishes seemed a beautiful and perfect way to start the new year.  Of course there was too much drinking, but spirits were high – mine included.  It was a wonderful night (and early morning), which I of course regretted a bit the next day.  Hangovers feel a little too much like the aftermath of chemo.

New Year's Eve

New Year’s Day, I nursed myself with an enormous batch of short ribs prepared in our new slow cooker, and on Sunday, as I anticipated returning to work after a deliciously long break, I shook off the inevitable malaise with my longest run yet, 9.5 completely kick-ass miles, after which it was hard not to feel utterly invincible.

Still, something lingered:  the cold, clammy hand of despair grasping at me; the tightness in my chest.  I was supposed to be living my life in Chris’s “big fat way;”  why did I feel so sad?

There is something inherently wrong, I told myself, about converting the tragedy of Chris’s death – she wasn’t even a close friend; I didn’t even know her very well, or for very long – into a study of my own post-traumatic stress.  From the moment of her diagnosis, she was set on a course of failed treatments, trials, surgeries and all of the accompanying indignities.  I have been fortunate enough to endure my own diagnosis and treatment “by the book” – responding well to chemo, successfully rehabilitating myself, returning to work, traveling, preparing to build my family and imagine a future.  I have all of those things which cancer stole from Chris and she never had a chance to reclaim.  I should be counting my blessings, not wallowing in self-pity.

It has finally occurred to me, though, that what has constricted my heart over these last few days is not so much about feeling sorry for myself as it is about reliving the terror of what happened to me, and facing the reality of just how close to the razor’s edge of death I actually came.  One false step – another few weeks, perhaps even days, before the fateful ultrasound that revealed my tumor – and instead of writing these words, I would be six feet under, or cast to the wind in a thousand directions over the waters of Long Beach Island.  Chris’s fate could have been mine.  As she left this world, as her cruel fate claimed her, the demons awoke again, and reached for me.  But they were shadows this time, without the strength they possessed three years ago, and thankfully, I was able to see that this time, I had the power to escape them.

To an outsider, to someone unfamiliar with the ties that bind we warriors together, the story of Chris’s death and the disorienting effect which it had on me might sound strange, even inappropriate.  It might not make sense.  To those within this world, this alternate reality, I can only hope these words ring true.  When we lose one of our number, we lose a part of ourselves.  It is a death writ small; it may be just a fragment of our fierceness, our fight, but the sense of loss is acute and painful.  In our own struggles, we have come so close to the precipice; we have stared into the void.  When we watch another go, we lose our own footing for a moment; vertigo kicks in. A few rocks come loose, and tumble into the unknown below.

Somehow, we manage to hang on and step back from the brink.  Somehow, we leave the demons clamoring in our wake as we run as fast as we can into the future – unseen and unknown, but rich with possibility.  We go on.

Posted in Death, fellow fighters, Life After Cancer, running | Tagged , , , , , , , , , , , , , , , | 2 Comments

chris ward blumer, fallen angel

Posted on December 30, 2010 by Emily

I want to talk about my friend Chris, who died earlier this week.  She and I connected early on in my days on Planet Cancer; she was newly diagnosed with Stage IV metastatic colon cancer when I was undergoing treatment for Stage III ovarian.  We eventually realized that we were both Northwestern alum; Chris graduated with a degree in theater, the same program I entered, but from which I quickly fled.  Her ingenuity  – which I came to admire as one of her many amazing qualities – led her to transform her inevitable experience waiting tables into an encyclopedic knowledge of wine, and ultimately to start her own wine business.  Chris continued acting and working as an artist when she was able, but always had a keen practical eye.  She had stayed in Chicago after graduating from NU in 1992 (two years ahead of me), and by all lights was a part of a large and loving community, in both her artistic and business ventures.  She also had a wonderful and devoted partner in her husband, Marc.

In August 2008, several months into our on-line friendship, I went to Chicago with my husband and parents for my first post-chemo vacation.  When I told Chris I was coming, she eagerly insisted that we get together, which we did one hot, sunny afternoon before a Cubs game.  We exchanged text messages in advance of our meeting:  “I’ll be the one at the bar with the duck fuzz hair”; “I’ll be the one with the chemo fanny pack.”

Outside Wrigley Field, August 2008

Getting to know Chris in the virtual world, I was always astounded by her wit, her pragmatism, her intensely passionate reactions to everything happening to and around her.  Her humor was ferocious;  it amazed me that someone battling Stage IV colon cancer could find comedy at every single turn.  To the limited extent that I knew Chris, this seemed to me perhaps the greatest weapon in her arsenal.  I’d always thought I’d had a vibrant sense of humor, but I felt cancer slowly drain it out of me.  When I would post dark thoughts on Planet Cancer, Chris would always buck me up with a light-hearted crack, while also cheering me on and encouraging me to stay strong.  She understood the horror of cancer as well as anyone, but she was never bitter.  She had a way of expressing anger without self-pity.  Though I never knew her before cancer, I don’t doubt that her many remarkable assets as a human being made her the force of light, strength and levity that she was for so many other young adult cancer patients and survivors.

The few hours that my husband and I spent with Chris, sharing beers and burgers in a Wrigleyville bar, made a lasting, searing impression on me.  When we finally met in person, I was taking my first tentative steps on my journey back to life.  Her path was far less clear; though she was due to finish chemo in November of 2008, her long-term prognosis was uncertain.  She’d had metastases to major organs upon diagnosis.  But to sit with her and laugh and share stories with her, you would never know it.  She was ebullient, full of life, regardless of what was happening inside of her.  She invented cocktails called things like Fred the Hot Tranny Mess.

I kept in touch with Chris intermittently over the months and years that followed.  I watched from a distance as she travelled with her husband, and also as she underwent surgeries and clinical trials.  I read her blogs and followed her story on Facebook and Twitter.  I was especially amazed as she performed in two shows during her final year – enduring long rehearsals and pre-show jitters, all while undergoing treatment. Ultimately, a few months ago, I noticed that she had stopped sharing herself on-line.  I worried, of course, and reached out to her through text messages.  Sometime in early November, I heard back from her, thanking me for my good wishes, telling me that she really needed them.  At that point it seemed clear she was near the end.

Toward the end of a wonderful holiday with my family in New Hampshire, I checked Facebook and saw the inevitable post from Chris’ husband, saying that she had died peacefully the Monday after Christmas.  I blinked my eyes in disbelief, feeling a wave of denial rush through my mind:  No, I thought.  That’s not right.  But it was;  she was gone.

In the days since learning of Chris’ death, I have been battling.  I am thinking of her, remembering little comments she would leave me on Facebook and Planet Cancer. Yesterday, out buying champagne for New Year’s, I imagined her words in my head, sharing her love of wine.  New Year’s Day, I’ll be breaking in my new slow cooker, and as the smell of braised short ribs fills the air, I will think about her endless love affair with food.  I will recall her smart-ass ideas for cancer-themed t-shirts.  Maybe I’ll even visit Cafe Press and make myself one that says, “TUMOR ASSASSIN” – always a favorite of hers.

Chris Blumer, beautiful soul. Photo by Benjamin Newton.

I am one survivor in a sea of countless young adults who are struggling to rebuild their lives after cancer.  Chris Blumer is one more fallen angel.  In the wake of her death, I reconnected with several other long-lost friends from Planet Cancer, and I’m heartened by the way we have all managed to comfort each other in this dark moment.  One woman related how people have said to her, “Why are you still hanging out with sick people?”  As if people won’t keep dying if we choose to ignore the reality.  We stay together because it’s the only way we know how to keep going.

There are countless people grieving for Chris.  Most of them, like me, have probably been wondering how best to honor her, how to keep moving forward.  The survivors among us are raging at the untimely death of yet another brave and beautiful soul, another fellow warrior bested by this wretched disease.

After Chris died, a survivor friend pointed me back to Chris’ own words from earlier this year, as we contemplated what seemed to be the impending death of one of our compatriots.  In a comment here, she wrote these words:

Here’s the thing: the best way to help is live it up like there truly is no tomorrow. Dance for those who can’t and drink in their honor. When my time comes, I hope all of my survivors, formerly tumorous or not, celebrate my life by living their own in a big fat way.

Chris, even after you’ve gone, you’re still showing us the way.  I’ll be sure to mix up some Freds in your honor.

Posted in Death, fellow fighters, Life After Cancer | Tagged , , , , , , , , , , , , , , , | 7 Comments

looks can be deceiving

Posted on December 19, 2010 by Emily

There’s a funny sort of game that we play with our fellow survivors – those kickers of cancer ass with whom we share such powerful affinity.  It’s an endless back-and-forth of affirmation, of reminding one another of the strength and determination we see reflected in our kindred spirits.  So many of the people I have gotten to know throughout the course of my cancer journey are doing incredible things – some loudly, forcefully, with great fan-fare; others with a quiet, humble grace that you might miss if you aren’t paying attention.  But no matter the scope or scale of the defiance, it is all brave and beautiful.

But for me, lurking just beneath the surface of every life-affirming gesture is a roiling sea of insecurity, fear and anger.  Recently, a friend’s words reminded me that while we as individual survivors may feel all of those diametrically opposed emotions – terror and fearlessness; ecstasy and sadness – the face we show the world doesn’t always allow for those kinds of contradictions.  And that when we are in the grip of one extreme, it’s difficult to pay deference to the other.

I was jolted into this state of awareness when my young friend – who is lovely, gifted, modest, powerful and fearless, not to mention a whole year further into the adventure of survivorship that I am – gave voice to the unsettled and unpleasant emotions that she’s been battling in these early days of winter.  At the same time, she offered exceedingly generous admiration for my having “totally annihilated” cancer.  Oh, the irony upon irony.  When I reported her observation to my husband, he actually laughed. So much is in the eye of the beholder.

The truth is, cancer is on my mind and in my heart every day.  Now, in addition to managing the baggage associated with my own illness and recovery, I am also fighting the guilt and anger that come with realizing that a good number of my young adult compatriots are not going to be as fortunate as I have been.  It’s like watching a horror movie in slow-motion, at arms length.

I look at my sweet young survivor friend, and am forever amazed at her sheer loveliness, her talents, her spunk.  She feels her own despair, but I can’t see it in her face or in the way she inhabits the world.  If it weren’t for her courage in expressing her darkest thoughts, I would never know.  Looks can be deceiving.

What’s to be done?  Most of us don’t want to sit around in a circle, beating our breasts, crying our eyes out, holding hands.  We want to be living, moving forward, searching out a path, discovering what we are passionate about.  Cancer arrests all of that for the young adult patient.

In the absence of an obvious remedy, the best we can do is keep living – willfully and joyfully.  This afternoon, I set out for a run.  It wasn’t long before I realized that my energy was lacking.  I hadn’t eaten enough; my legs quickly grew wobbly.  I’d packed a snack, fearing this exact scenario.  I walked for a moment, and scarfed it down.  It was cold, and I felt weak.  I’d been running for twenty-five minutes and already felt wasted.  I’d had visions of six-plus miles, but was beginning to think I’d best cut it short and head home.

A few hundred yards later, I came to the intersection where I intended to turn back toward the house.  I’d begun to map out an alternative route in my head.  But as I headed across the street, something in me clicked over.  My legs started to feel stronger, my stride more sure.  The calories kicked in.  The cold air on my face was suddenly invigorating.  Instead of turning off, I kept going along my intended route – west along Cooper River, with nowhere to turn until I completed the 3-plus mile loop.  I committed.

I was thinking of my friend, and how she’s battling.  She was pushing me forward.  In reality, I haven’t annihilated anything.  I’ve just found a way to keep moving.

Posted in fellow fighters, Life After Cancer | Tagged , , , , , , , , , , , , , , , , | 6 Comments

baby steps

Posted on December 15, 2010 by Emily



My inclination at the moment is to stack up today’s minor emotional setback against the nightmares that so many other fighters and survivors are enduring, and just let it go.  It’s almost embarrassing to admit these feelings, but I need to acknowledge them, just for a second.  There’s been a lot of progress, but maybe just not quite as much as I thought.

It seems like since the moment I returned to work after cancer treatment in July 0f 2008, there’s been an unending succession of baby showers in my office.  I’ve written about my struggles as a menopausal 30-something in an office full of excessively fertile women.  Most of my co-workers who’ve had babies in the past few years are not people I am especially close with, so I haven’t felt too bad about skipping out for a shopping spree or a coffee date while everyone gathers in the conference room to eat sweets and fuss over booties.

But today was the shower for a colleague who I genuinely like and respect.  Last week, I said to Mike, “You know, I think I’m actually up for Lauren’s shower next week.  I really like her, and am so happy for her, and now that we’re under way with the adoption stuff, it feels different.”

Turns out, not so much.  When the hour arrived this afternoon, I couldn’t do it.  I felt that awkward knot of sadness in my chest, the clenching that I know all too well from the countless moments over the last few years, when the reality of my age-mates’ version of normalcy collides with my own.  I truly believe that I’ll be a mother one day in the not-too-distant future, but it feels different.  Not that I ever necessarily wanted all of the fussing and oohing and aahing that comes with being pregnant;  I just wanted the chance to raise a child.  I guess what still gets me, though, is the fact that cancer robbed me of the opportunity to make my own decision about my path to parenthood.

So I hunkered down in my office and worked through the hour when most of my colleagues were gathered to eat and laugh and share hugs and good wishes for our latest mom-to-be.  I hated realizing that I haven’t come quite as far as I thought I had, that I am still not able to just experience simple, uncomplicated happiness for someone else who is about to experience the joy of parenthood.  But I had to do what I needed to do in order to ensure my own sanity, even if just for that brief moment.

I sent my friend an email, and tried to explain as simply as I could why I couldn’t participate in her shower.  It worries me that the emotional scars which cancer has left will strike people as indifference or coldness, and I wanted to be sure that she knew that I do share in her joy at this moment.  Maybe after some beer and tacos this evening, I’ll feel fortified, and maybe tomorrow I’ll be one step closer to the place of true acceptance that I’d mistakenly thought I’d already reached.

Most days, I feel like I am making huge strides away from cancer.  Other days, like today, I realize I am still fumbling.

Posted in adoption, Infertility, Work | Tagged , , , , , , , | 1 Comment

inarticulate speech of the heart

Posted on December 11, 2010 by Emily

I woke this morning with a singular focus:  take a nice long run, hopefully my longest yet, to start the day.  For the past two weeks, I have been fighting a losing battle with the cold and dark, and have found myself buried under the covers well past the ringing of my “running alarm” each morning.  At this rate, it’s shaping up to be pretty a tough winter, at least as far as maintaining my fitness.  Weekends are my only hope for continuing my year-plus stretch of  physical determination and discipline.

So I woke, and dressed to run, while Mike slept on.  He’d been out late playing music, while I sat by the fire and warmed up after our two-hour walk to Collingswood and back for the holiday Parade of Lights.  It had been a fairly idyllic late fall evening and I had gone to sleep feeling fortunate and contented.

The Collingswood Parade of Lights

As I do most mornings, I checked my email first thing.  I saw a notice that one of my very first virtual cancer friends, who I have written about here before, had posted something on Planet Cancer, where we first got to know each other.  Checking the link to his post, I saw that his dearest friend and soul-mate, a 38 year old woman who shared his diagnosis and history of recurrences, had passed away last Monday, leaving a husband and young son behind, along with countless other heartbroken souls.

His post was pitch-perfect, a beautiful account of his friendship – the word seems inadequate – with this extraordinary young woman:  what drew them together, how they supported each other through their parallel battles.  It was a tribute to a remarkable person I wish I’d had the chance to know better.  His words provided the kind of insight into human connection, particularly in the face of cancer, that I have never seen before.  It seems futile to even try and capture what it was like to read these words first thing this morning, and how the reality of another tragic death from cancer wrenched my heart and cast a fog over my mind.

In the wake of this kind of news, the joy and good fortune of my own life as a survivor takes on a kind of poignancy that leaves me baffled, inarticulate.  Nothing seems to make sense.

My friend – I will call him Nate – also made a point to emphasize how his connection with his friend – I’ll call her Vanessa – was borne of the unique and completely essential social environment of Planet Cancer.  He even went so far as to urge us all to continue connecting with and supporting our fellow young adult survivors through the Planet, as a way of honoring Vanessa.  She was a generous, kind and prodigious presence within the confines of the Planet Cancer social network;  Nate was blessed to have extended his relationship with her into real time, into a vital, central place in his life.  What may have begun as two young adults with a shared diagnosis finding comfort in a similar sense of humor and irony grew into the kind of bond that truly defies description.

When I first joined the conversation on Planet Cancer, in February, 2008, at the beginning of my treatment, Nate and Vanessa were both regular contributors, often commenting on people’s posts and discussions, and sharing with all of us an honesty, energy and humanity that I believe we all truly relied on to lift us up in our darkest moments.  The magic of these two is that they were both always able to translate their own struggles into high-spirited wisdom that benefited us all.  They were an engine of love, tirelessly powering us all forward in the face of cancer, no matter how weak or scared they themselves might have felt.

My writing that began as an informal blog on Planet Cancer eventually grew into this site, over the summer of 2009.  As I grew stronger, I felt less need to spend time amidst the virtual connections of my Planet Cancer family.  I started my own blog because I wanted to share my thoughts with a “wider audience.”  Today, that seems embarrassingly self-aggrandizing.  Not to mention that in doing so, in turning away from the Planet, I turned away from the very first place that I was able to make connections with other young adults facing cancer.  It was ground zero for everything that has enriched my life since I was diagnosed.

After I finally took my long run this morning, all the while thinking of Nate and Vanessa and others from my Planet Cancer “class,” the reality struck me: people are starting to die.  Of course, young people have been dying of cancer since the moment I was diagnosed three years ago, and long before that.  But something that I have long dreaded is now happening:  people I have gotten to know along the course of my own cancer journey are starting to die.  This reality has me utterly at a loss.

This afternoon, stupidly, I started sputtering on Facebook.  (What else do we do on Facebook, really?) I updated my status with vague and ill-thought-out comments about the injustice of young adults dying, being angry, blah blah blah.  I didn’t even know why I was doing it, or what I was trying to express.  Some of the comments I received back made it clear that my words were reflecting just how addled my brain was after receiving the news of Vanessa’s death.

The sky is darkening as I write, and night is settling it.  It’s off to a holiday party in a few hours.  I am not feeling festive.  Rather than pretending at holiday cheer with my husband’s workmates, I would like to be somewhere dark and quiet, somehow reunited with all of the souls – living and dead – who have marked me since my journey began, sharing a warming glass of whiskey, and our special brand of love.

Posted in Death, fellow fighters, Life After Cancer, running | Tagged , , , , , , , , , , , | 5 Comments

when hope is all we have: elizabeth edwards remembered

Posted on December 8, 2010 by Emily

Everyone has been writing tributes to Elizabeth Edwards over the last twenty-four hours.  The grief which I felt upon learning of her death yesterday was likely no greater than that of anyone else who admired her but never knew her personally.  But it may have been more particular.

As I wrote at the beginning of this year,  I spent the early days of my own cancer treatment immersed in the pages of Elizabeth’s memoir.  I’ve already commented on what her words meant to me during my illness, how her earthy determination and willingness to speak freely about her struggles gave me hope and inspiration.  But now that she’s gone, I feel compelled to honor her again.

Rest in Peace, Gentle Lady

 Last night, I said to my husband, “I know this sounds crazy, but I never actually thought that cancer would kill Elizabeth Edwards.  I just can’t believe it finally happened.”  I am not a doctor, but I had a pretty clear understanding that Stage IV metastatic breast cancer is not something you live with indefinitely.  Sooner or later, it’s going to kill you.

 But I didn’t think it would kill Elizabeth Edwards.  She was too smart, too lovely, to full of wisdom and courage.  She had endured such an unbelievable amount of pain and suffering, cancer notwithstanding.  If she could survive her son’s death and her husband’s infidelity, surely cancer was no match for her.

More so than ever before, and probably because of my own experience with cancer, I am increasingly prone to this kind of magical thinking.  It must be a kind of survival mechanism that kicks in when you are directly confronted with the reality of just how much pain there is in the world, and how almost everything that happens in our lives is completely out of our control.

I wanted more than anything to see Elizabeth Edwards rise from the ashes of her marriage and her illness, watch her young children grow up into beautiful, intelligent adults, and experience the greatest second act in the history of politics.  She had an incredible mind and heart, and wanted so much to make our country a better place.

Now that she has died, I recognize the folly of my thinking.  But I am not embarrassed to admit I harbored these vain hopes.  Because as Elizabeth taught as us all, sometimes hope is all we have.

Posted in cancer, Death | Tagged , , , , , , , , , , | Leave a comment

three years on: haunted, miraculous

Posted on December 5, 2010 by Emily

When I last wrote, I’d just gotten a hard slap from cancer at the precise moment it seemed I was at long last beginning to put some distance between my life as defined by cancer and the life that I am finally beginning to believe that I am not only entitled to, but will actually have.  For reasons passing understanding, anxiety caught me briefly in her all-too-familiar clutches, perhaps as a (not so) friendly reminder that this dance will never end – not completely.

Over the past few weeks, the truth is, I haven’t really felt the need to write – at least not about cancer.  There haven’t been those moments when I find myself taking note, saying, “I need to come back to this.  There is something of significance here.”  Between the momentum of the holidays and finally getting our adoption process into a higher gear, my preoccupation has been with moving forward, living fully and with positivity – not necessarily dwelling in the shadow of cancer.

In a lovely bit of irony, this past Monday, 11/29, was the three-year anniversary of the MRI which started my cancer journey.  Due to the way my story unfolded, I am blessed with a rapid succession of anniversary dates (MRI; first appointment with my oncologist; surgery confirming diagnosis) all within the space of one week.  Last Monday was also my four-month check-up.  As has become the custom, it was in and out, no muss no fuss.  The only thing slightly different this time around was that I handed my oncologist the medical form from our adoption application – the one with the ominous question, “Does the patient have a normal life-expectancy?”  I’d been wondering ever since getting the form how my doctor would respond.  Finally, it was time to find out.

But it was an exceptionally busy Monday morning, so my doctor said she’d need to take the form to complete and mail it back to me.  The suspense would thus continue.

When I went to the front desk to schedule my next appointment, I was stunned to hear that I wasn’t due back for six months.  I gave the receptionist a confused look.  “Um, I don’t think so.  Can you double check?”  I was so certain of the mistake that I sat and waited for an extra ten minutes while they confirmed my schedule.

After one of the nurses appeared and conferred with the front desk, I was summoned back.  “It’s six months, Ms. Beck.  We’ll need to see you back around the end of May.” Thanksgiving had just passed.  The thought of not coming back to see my oncologist until Memorial Day almost made me laugh out loud.  “OK, great.  Wow.  Thanks for double-checking.”  I walked out of the Perelman Center and up to the Market-Frankford El with a delirious grin on my face.  Not a bad way to celebrate the first installment of my cancer-versary week.

The week rolled on at a relentless pace, with therapy, adoption workshops and a Superior Court brief all thrown into the mix.  The end of each day left me exhausted, and I tried and failed several times to get up for an early-morning run before work.  For reasons I couldn’t quite identify, I needed extra rest, to burrow deep down under the covers and gather strength.  I found myself irritated with my apparent sluggishness, but by the end of the week came to realize that sometimes, the mind and body just need to rest.  It’s a lesson I hadn’t given much thought to since the hey-dey of my chemotherapy.

Finally, mercifully, Friday arrived.  Friday, 12/3, the second of my anniversaries – the day of my first meeting with the doctor who saved my life.  I was up to my eyeballs in brief-writing, and didn’t have much time to spend reflecting on the significance of the date.  At day’s end, my brief was finally complete and I was looking forward to an evening with Mike.  But he was unexpectedly dragged into a work-related cocktail party, so I rode the train home alone, pissed off and vaguely aware of an shapeless sadness creeping in.

Collecting the mail as I walked into the house, I saw the envelope from Penn, which I knew contained my medical form, and the answer to the question I’d been wondering about for months.  I was finally going to see where my oncologist put her check-mark – YES, or NO – next to the question about my life-expectancy.

Before I opened it, I noticed another envelope, one addressed in my own handwriting.  It was the letter I had written to myself from the top of a giant rappel in Utah, eight months earlier.  The contents weren’t necessarily remarkable, or even unexpected (though I certainly had forgotten what I’d written all those months ago.)  But seeing my scrawled handwriting on those pages, remembering the brilliant blue sky above us as we sat on the dust-covered orange rock, waiting for the culmination of our week of climbing with First Descents, I was suddenly put right back into those feelings that have defined my journey back to life.  Fear, anger and sadness, bleeding ever-so-slowly into courage, acceptance, elation.  It reminded me, in a blinding flash, of all of the love and support and fellowship that has finally brought me to the place I am today.

Writing letters to ourselves, First Descents Utah, April 2010

With those emotions filling my heart, I ripped open the envelope from my oncologist, and my eyes fell immediately on the check next to “YES” – the patient has a normal life expectancy.

I don’t quite know what I had imagined, or even what the real significance of the answer to that question is.  I suppose I’d guessed my doctor would have had to write some convoluted explanation about how with proper screening and monitoring, blah blah blah…it was possible that I would live to a ripe old age.

My doctor is not a clairvoyant, and of course she doesn’t have any way of knowing how long I will live.  But as I prepare to spend time this evening writing my autobiography for our adoption profile, and as my mind turns increasingly to what our life will look like once we are parents, I must confess that I have worried, however unconsciously, that we are embarking on an ill-advised journey that will ultimately see my husband raising our child on his own, after I am gone.   Having this affirmation from my doctor, though, gave me a sense of confidence about what we are trying to do, and provided a shot of hope and encouragement that I know will catapult us forward.

As my feelings began to settle that evening, I poured myself a glass of wine, and set to wait for Mike.  I turned on some music, and moved through the house, feeling somehow lighter than I had when I got home.  Still, something gnawed at the corners of my consciousness.  A short while later, Neil Finn’s “Into the Sunset” came over the kitchen speakers.  I immediately felt my eyes well with tears.  I recalled, in an instant, Valentine’s Day 2009, when Mike and I sat and recorded our own version of that song.  I remembered the way we had fought earlier that night, the pain and rage that were still so real and raw.  I couldn’t explain my tears other than to realize, in that moment, that no matter how strong I become, no matter how my life grows, no matter the beauty that fills each day, I will always be haunted, however remotely, by the scars which cancer left.

I exhaled deeply, and my mind turned to several of my friends who are battling so hard right now, whose hope may be dwindling but whose fights go on with love and grace and determination.  I imagined their families, and I thought of my own huddled together in the waiting room outside of the surgery on December 5, 2007.  I remembered the blackness that seemed set to engulf us all, and the marveled at the light all around me now, three years later.  I cried because I want so much for all of my friends who are suffering to know how it feels to be where I am now, and because I am afraid that they never will.

Today’s date is December 5, 2010.  Three years ago today, I was cut open, and cancer was cut out of my body.  The intervening years have seen fitful cycles of fear, resignation, doubt, terror, pain, sadness, heartbreak, exhaustion, confusion, hysteria – emotions which have gradually given way to determination, laughter, peace, hope and genuine happiness. Three years ago, I could never have imagined being in the place I am today.  It feels nothing short of miraculous.

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

the wonder of the now (or, Cheesesteak 1, Shelob 0)

Posted on November 18, 2010 by Emily

As I was walking to court this afternoon, for what promised (and proved) to be a very uneventful hearing, I felt a strange sensation creeping over me.  It was a faint sensation, not overpowering, but it was vaguely and disturbingly reminiscent of the sense of dread that often overtook me in the early days of trying to figure out how to live again after cancer.  I hadn’t felt this unsettling wave of panic in what seems like ages.  Today, it seemed to come out of nowhere,  triggered by nothing in particular.  But the sensation was all too familiar.

It’s best described as a travelling terror that disrupts my sense of balance and sure-footedness.  It’s as if my mind and body are floating away from each other, disconnecting in the grip of an acute awareness of the mystery of what lies within me, of feeling like I am moving inexorably toward a head-on collision with the disease that almost killed me.  As if my tumor might roll around from behind a building as I walk by and suddenly grow into some hideous, Shelob-esque creature, and devour me whole.

Nasty bugger, isn't she?

The feeling emanates from my legs, from the tingling in my neuropathic feet, the place where the strongest reminders of my treatment linger.  It floats through my middle,  where it encounters my empty abdominal cavity, the place where my cancer lived.  Finally, it lands in my intellect, and I am chilled once again as I think about what happened to me, how much worse it could have been, how it might have ended – how it might yet end one day.

I noticed the feeling, and kept walking.  I made sure to breathe deeply.  I came out of my head.  I thought about the run I took this morning.  I thought about how after pumping my legs for 40 minutes, my body was charged and ready to keep going for another 40 minutes.  I turned my mind to my current state of wellness.

The three-year anniversary of my diagnosis is fact approaching, just a few weeks away. Thanksgiving will always represent the last, frozen moment of blissful ignorance, before my life changed forever.  I like to think that I have reached a point where these arbitrary days on the calendar will no longer trip my emotional switches, and send me careening back to this time three years ago, to the eve of my illness.  Life is charging forward, almost at breakneck speed.  We are gearing up to build a family; it’s really going to happen.  Over the last few days, I almost found myself thinking, “Cancer is receding.  I am moving away from it.”  Life is becoming about so many other things.  Exciting, beautiful things.

Perhaps that’s why the chill wind that blew as I walked to court this afternoon put my mind back to that place I never want to go again.  Perhaps it is the notion that I am actually walking away from cancer, trying to leave it in the past, that caused my ancient anxieties to rise up and stir within me.

As familiar as that brief moment felt, and as much as it reminded me of the panic which so often gripped me in the early days of my return to Life on Earth, the speed and deftness with which I vanquished it was something quite new.  Now, unlike then, I have the legacy of the last two years to remind me how strong and healthy I am.  Now, unlike then, I have the ability to draw on my own inner fortitude.  Now, unlike then, I have the capacity to take myself out of the fear of the unknown, and ground myself firmly in the wonder of the now.

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

leap of faith

Posted on November 13, 2010 by Emily

Thursday night, Mike and I attended a workshop on the effects of substance abuse during pregnancy.  Our agency, Open Arms, does a fabulous job of making the adoption process all about “lifelong learning,” and one of the areas they want to make sure people are educated about is how a birth mother’s substance abuse can impact a developing fetus.  The idea is, armed with information, and a sense of what you’re up for handling, you can make a carefully reasoned decision about whether or not you are willing to consider adopting a drug-exposed child.

The evening got off to a dramatic start when one of the men in attendance had what appeared to be a seizure of some kind.  In a stuffy room, talking about all kinds of icky things, it was no wonder that he checked out for a minute.  Still, it was unnerving for everyone, and did set a rather uneasy tone for the remainder of the presentation.

After two hours of listening to a pediatrician with almost 30 years of experience working with drug-exposed babies, as well as parents who have adopted children whose mothers were using, it’s fair to say our heads were spinning a bit.  One thing that seemed very clear is that a woman who is using drugs during her pregnancy is quite likely also using alcohol (the mother of all bad substances) but not disclosing the fact, so even if you say that you are not open to adopting a child who has been exposed to alcohol, there’s a good chance it could happen anyway.

It was strange – disquieting, even – to sit there, with my abdominal cavity cleared out of all of my reproductive organs (and the cancer which they housed) and listen to what so many pregnant women do to poison their unborn children.  As Dr. Friedman ran through her Power Point, rattling off all of the horrific effects which illicit (and legal) substances have on a growing fetus, my mind kept turning inward, to my renegade insides.  How very foreign, unknowable and lethal our bodies can be to us, and we can be to our bodies.

As we walked to the train at evening’s end, debriefing and ruminating on all that we had just heard, one thought kept coming back to me:  If I’d had a child of my own, I would have had a 50% chance of passing on the HNPCC mutation to her.  With odds so much higher than many of the statistics we heard last night, I would have consigned my child to a life where cancer would have been an inevitability.  Granted, it wouldn’t have been a “choice,” the way that someone chooses to use drugs during pregnancy, causing any number of emotional, cognitive and behavioral problems.  But it certainly very well could have set my biological child down a path that I wouldn’t wish on a sworn enemy.

So I went to sleep that night thinking about luck, and chance, and control.  I thought about the unpredictability of so much of life, especially of how our children turn out.  Whether through blind misfortune, ignorance, or genetic defect, there are any number of ways in which our children can be born into struggle.

As we heard over and over again at the workshop, at some point, you just have to decide whether or not you are willing to take that particular leap of faith.

Posted in adoption, Family, Infertility, Life After Cancer | Tagged , , , , , , , , , , , , , | Leave a comment