my dog ate my GI cancer risk evaluation forms

Posted on December 8, 2009 by Emily

LATE AFTERNOON (5:15 PM)

One of my old friends from high school made a very funny observation the other day on Facebook:

“I think people say something is a “perfect storm” when what they really mean is that it’s a shit-storm.”

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So maybe what hit me today after I returned from court was just a perfect little shit-storm.

A few things converged today, unexpectedly: the faint, but nonetheless palpable residual effects of the anniversary of my diagnosis (damn you, December!); anticipating a three-month check-up on Monday ( “little bit of pressure…OK, a LOT of pressure…”); and the pile of forms that I need to fill out so I can get myself hooked up with the genetics people at Penn who are going to tell me how many times a year I need to have a camera shoved up my ass, in an effort to detect early the colon cancer which I am genetically pre-ordained to get.

Yes, I am being dramatic.  No, it’s not pre-ordained that I will get colon cancer, another varietal in the lovely disease bouquet that comes with the HNPCC mutation common in my family, and which it seems quite apparent that I have.

My oncologist referred my case to this program at Penn many, many months ago, and they promptly sent me a huge pile of forms to fill out, in which I am to detail every incidence of cancer in my family dating back to the Paleozoic Era.  And like some kind of non-compliant loser, I just haven’t done it.

The last few times I’ve been for check-ups, my onc has casually asked, “Did you ever get connected with those GI genetics people?”  Sheepishly, I have told her “no” each time, that I was waiting to get more information on my family’s medical hisotry, blah blah blah.  Basically telling my oncologist that my dog ate my homework.

Why am I acting like such an asshole about this?  All I want to do is be the perfect patient – go for every rotten test and screening, go for my insanely frequent check-ups, whatever is asked of me.  Ever since I was first diagnosed, I would say things like, “I want to be the perfect patient.  I want to get an “A” in patient-dom.”  And yet for months on end, I haven’t been able to sit down and bring myself to fill out these goddamn forms.

WHY?

Because I know that once I do, I’ll get a call from some pencil-necked geneticist, and that I’ll be hauled in for an appointment where they will sit down and tell me how many instrusive tests and screenings I’ll need to have every other day.  And all it will do is stir up this feeling that it is only a matter of time until I am hit with some other flavor of cancer, a recurrence of  my first cancer, or hey, why not BOTH?

I know it’s irrational.  I mean, what the fuck?  I already had cancer.  It’s not like I don’t know what that feels like, and it’s not like if I sit down with a genetics dude that he’s going to tell me, just by looking at me, “Well, I can clearly see that you have cancer again.”

It’s all about surveillance and early detection and vigilance and blah blah blah.  I should be glad to have this resource available to me.  Instead, it feels like I am scheduling a lunchdate with the Grim Reaper.

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Over time, I have been able to get away from this feeling that I am a ticking time bomb, that I am destined to die young because of my cancer history.  In truth, I felt like fear ruled my life to a much greater extent before I was diagnosed.  In a lot of ways, getting cancer has been liberating:  it happened, this thing I always feared, and look!  I’m still here!

But for some reason, this task of sitting down with paperwork and pouring over piles of notes about my family medical history just feels like a total buzzkill.

I have been feeling so great – so strong and powerful and undaunted, surrounded by so much amazing love and support – that getting tripped up today felt downright weird.  This is not who I am any more.

Yet it all makes perfect sense.

Still, when I took myself into the bathroom to have a little cry this afternoon, just to get some of the toxicity out of my system, it was incredible to realize how easy it was to pull myself out of the muck.  Just by letting my heart fill with thoughts of all of the courageous, powerful people I have gotten to know since cancer was enough to lift me up.  I thought of everyone – Fridge and Double-Oh and Jennie and Beth and Annette and Tanja and Alli and Becki and Hollywood and Bald Fox and the list goes on and on.  All I needed was all of those stories, a moment to pause and reflect on those other human beings out there in the world, doing their thing, living their lives, to remind me that in that moment of feeling lost and overwhelmed, I was not alone.

Pretty neat trick, wouldn’t you say?

LATER (8 PM)

OK, this is the part where I hang my head and make puppy dog eyes and feel really embarrassed about how I let a few pages of questions about my health get me all out of whack.

First, observe:

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I did it!  With my sweet and patient husband at my side, I finally filled out these fucking forms, which tomorrow will be scanned and emailed to the “Gastrointestinal Cancer Risk Evaluation Program at the Division of Gastroenterology, Department of Medicine University of Pennsylvania Health System.”  As it turns out, the name of the program is longer than the forms I completed.  So here I sit, feeling like a skittish little kid who is convinced that there is a 20 foot alien zombie lurking in my closet, only to have the light switched on and realize that it’s just the silhouette of a cast-off stuffed animal.

I’m not too embarrassed, though.  In spite of today, I know that I am handling the new reality of my life as a survivor with about as much grace, strength and levelheadedness as can reasonably be expected.

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turn on the quiet (or, not so fast, mr. vacuum)

Posted on December 6, 2009 by Emily

Sunday, 11:30 AM:

It’s an extremely cool thing to be married to someone who, at critical moments, knows me better than I know myself.

I have this thing since cancer:  I really like being busy.  Running around.  Doing stuff. Multi-tasking.  I spent so long unable to do anything (or so it seemed) that I now relish the feeling that I can do errands, go running, socialize, all in one day, and still have gas left in the tank when it’s all over.  It’s great to feel ALIVE.   I spent seven months sitting at home by myself: why on earth would I choose to do that rather than GO, GO, GO on any given weekend?

Well, this isn’t just any weekend:  it’s my cancerversary weekend.  Yesterday, a miserable, No’reaster-shrouded day, Mike and I hustled over to Collingswood, NJ (for the millionth time, it seems), still searching for our “perfect house.” After a few hours out in the rain, we came home to unwind  – briefly – before heading out to a holiday party hosted by one of Mike’s workmates.  And after that, back to NJ, to christen our good friends’ new home with some build-your-own cannoli and an impromptu jam session featuring guitar, piano, tambourine, bongo and Poma-poo.  It was a delightful, festive evening, in spite of the rain and wet snow, and we arrived back home around midnight feeling lighthearted.  It was a wonderful way to spend the anniversary of my cancer diagnosis, a day that left me smiling, full of the life that is brimming all around me.

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Today – brisk, cold and sunny, finally feeling like winter is coming – was shaping up to be a day full of chores outside the house, looking at more real estate, and the possibility of not having time to take the run outside that I have been looking forward to since I first looked at the forecast for the weekend.  So, just as I was wrestling with our constantly malfunctioning vacuum cleaner, feeling a bit of the PTSD that I always do when operating the thing (details of the connection between my cancer and vacuuming will have to wait), my dear husband said, calmly, “Em, do you think you need a time-out?”  Not because I was acting out, but because even now, even as I have grown into this person who just wants to be constantly DOING, just to remind myself that I CAN, I still – sometimes – benefit from some extended quiet, an opportunity to recharge and reinvigorate my spirit with solitary acts – writing, reading, sipping a cup of tea.

It’s a new thing, a recent thing, to be able to recognize that it’s OK to have limits, to reach a point where I need to rest and be still, and that doing so does not signal a reversion to the person I was during my illness.

So I agreed to let Mike out into the world this early afternoon, to look at a few more pieces of real estate, buy some groceries and replace the dreaded vacuum cleaner whose arrival into our home exactly coincided with my surgery two years ago.  And I agreed to give myself an opportunity to lower my heart rate, have some green tea and gather some energy for the run I will take later this afternoon.

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A couple of realizations have thus come out of this anniversary weekend.  The first is that I am finally in a place where I am able to work through social situations, such as the holiday party last night, where I am essentially among strangers, or people who I know only peripherally, and feel happy and confident, and not preoccupied with my identity as a survivor.  I can even graciously accept a comment like, “How are you getting along now,?” as an appropriate expression of concern for my well-being, without being catapulted into a morass of cancer-related post-traumatic stress.

Similarly, when I was over at Philadelphia Runner on Thursday getting my new Pumas, I ran into a law school classmate who I had not seen since I was diagnosed.    He seemed glad to learn that I was getting into running, and asked if I was training for anything in particular.  I hesitated, realizing that this was the moment where I would either tell him about my cancer or not.  In that instant, I could not think of a reason why it was important to share that information.  As Mike said later when I described the encounter, I am more than just someone who had cancer.

After that brief reflection, I just said simply that I was hoping to do a 10K in the spring, to which my acquaintance said, “That’s great,” and we moved seamlessly into talking about out respective jobs.

There it was: an opportunity to realize that cancer can be a part of my life – a critical part, even a defining part – without consuming me, or being something that I am forever obliged to reveal.

Just as importantly, Mike’s deftly handled “intervention” earlier today reminded me that I am entitled to my moments of quiet, and that those moments do not necessarily serve as extensions of the period of isolation which so defined my illness.

Some clouds have rolled in here in the early afternoon, but later on, after the re-charging is complete, I will be thrilled to slip on my new running shoes and hit the pavement.  Happily, I get to do it all now – to exert myself and feel my strength and stamina growing, but also to retreat and be still when needed.  The truth is that all of it, and everything in between, feels fantastic.

LATER (5:45 PM)

A few hours ago, the cancerversary demons finally caught up with me, after I had laced up my sneaks and was getting ready to head out for my first cold-weather run.  It’s hard to describe what exactly brought it on.  But I nominate this beast:

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For reasons passing understanding, this vacuum cleaner has become my own personal, inanimate Voldemort.  Later this week, he will be consigned to the basement and be replaced with a vacuum that  – let’s see, I don’t know, WORKS?  But for the time being, he remains an albatross closely connected to my cancerversary, representing both all of the menial things I was unable to do for myself during my illness, as well as the complicated ways in which my cancer affected those closest to me.  So yes, when I spoke to Mike at 3:30 and he told me he was not, in fact, bringing home a new vacuum cleaner, well, I kind of lost it – just a teeny little bit.

In my book, there is nothing wrong with tears, especially at a time like this.  There is especially nothing wrong with them when, for the most part, I am feeling great.  Because in spite of all the good feeling that I have amassed in recent weeks and months, there remains, underneath it all, those same seeds of anger and sadness that used to so dominate my emotional life in the immediate aftermath of cancer.

So I cried while I stretched, and squeezed my eyes tight to try and stop the tears, and seriously thought about pounding my fists into something very hard.

But I didn’t.

Instead, I bundled up, hooked up my Nike-plus, cranked up the tunes and headed out the door.  About two blocks from my house, feeling a bit wobbly and vertiginous, I thought seriously about heading back.  “You need more time to cry and feel shitty,” I said to myself.  “Just turn around and go home.  Relax.  Give yourself a break.”

But then another voice chimed in: “Screw that.  Keep going.  You’ve been looking forward to this run for days.  You can’t let cancer take this run away from you.  Don’t think about going out tomorrow, or the next day.  Do this now.  Show this stupid fucking disease who’s boss.”

And so I ran on, eventually hitting a great stride, ultimately finishing at a pace under 10 minutes per mile for the first time ever (I think.)  And now, closing in on 6 PM, with a yummy dinner and a quiet night with my honey on the horizon, I am back on top.

It’s good to be here.

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f*#% you very much, cancer

Posted on December 3, 2009 by Emily

Thanks to global warming, this December 3 – my own personal designated cancer D-Day –  feels nothing like the corresponding day two years ago when I realized I was facing a battle with this truly mean-spirited disease.  Hence, no weather-triggered PTSD.  Instead, it’s a cool, dry, breezy day and I feel, for the most part, pretty effing good.

I went out at lunch time and bought myself a new pair of running shoes.  I got killer, laid-back service from an adorable fellow at Philadelphia Runner, who even listened patiently while I tried to describe the indescribable feelings associated with the neuropathy in my feet (“It’s feels like they’re…wrapped in something…like there’s something there…like cotton…”)  After forty-five minutes of walking back and forth across the shop in three different pairs, I finally settled on the Puma Ventis; can’t wait to try them out tomorrow morning.

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I figured treating myself to a new pair of running shoes was a good way to mark this date, and say FUCK YOU! to cancer.  Every day, I am amazed at how good I feel.

Still, right now, I am sad and angry as hell.  I just learned that a friend’s cancer has recurred for the second time, and surgery and possibly more chemo are on the horizon.  She’s a tough cookie -WAY tougher than I was when I was diagnosed – and I am continually amazed at her strength and composure.  Still, when she shared this news with me – just as I was caught in a kind of hazy emotional twilight thanks to my own cancer-versary – I had to cry a little and hug her extra-hard, because it is all just so stupid and meaningless and wrong.

So fuck you very much, cancer.  Tomorrow morning, I will beat you into the ground with my new shoes while I run extra hard in honor of my friend, and the fight that lies ahead for her.  Just don’t think for one stinking minute that you have won.

POST SCRIPT (9 PM, EST):

It’s several hours later now, and I feel compelled to say that I’ve had a wonderful evening with my husband.  We left work together, and I was thankfully able to shed some of the day’s clinging heaviness.  Once home, we shared gin and tonics, and had a great little jam session on the upright before heading out to dinner (at my request) to mark the end of this significant – but no longer debilitating – day.

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It’s impossible to escape the dark emotions which caught me up earlier today as I contemplated my friend’s situation, and thought about how life has been turned upside down since my own diagnosis.  But to be able to breathe some of it out, and let the music and laughter and light in, is a critical skill, one which I am always relieved to see I still possess, after everything, and in spite of it all.

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a courageous front

Posted on December 1, 2009 by Emily

The_Pied_Piper_of_Hamelin_by_SquidPig

Yet another day on the cancer roller-coaster, though not quite in the way I might have anticipated.  December 1:  the diagnosis anniversary is nigh.  Thursday, 12/3, is really my own personal D-Day, even though it does not signify the day I was diagnosed (that came two days later.)  It’s the day I sat down with Dr. Chu for the first time  and listened to her grimly pronounce that she would not be able to tell for certain about the nature of my tumor  – or if it had spread – until she opened me up.  Nevertheless, it’s the day that I knew I had cancer.

There was no doubt in my mind.  That was the moment.  I knew even before I arrived at the office.  That morning, I woke up with screaming abdominal pain, and when I sat on the toilet, straining to move my bowels, I passed out.  I was standing at the edge of the precipice, and I knew it.  I didn’t need an oncologist to tell me what was wrong with me.

So D-Day is Thursday, and by any logical measure, it would make sense for me to be feeling a bit off, replaying the moments right before my life changed forever, in a kind of slow-motion re-animation.  I distinctly remember going through that at this time last year.  I remember slowly giving way as the day wore on – fighting back the tides of anger and sadness until I could hold them no longer.  I rushed out of work at 3 o’clock, passing one of my bosses on the way, fighting back tears, and cried on the train the whole way home.

Who knows.  Maybe the same thing will happen later this week.  But right now, I doubt it.  Right now, I am drinking cheap red wine and thinking a little bit about Obama and Afghanistan and listening to the Beatles’ “Long, Long, Long,” and I feel like the Pied Piper of Young Adult Cancer.  I am paying it forward.  I am shining a light, doing what I can to help others who are going through some version of the nightmare which I endured, and it feels amazing.

Today contained a bit of classic cancer-induced emotional whiplash:  one moment, I was learning from a friend that despite a course of drugs for a recurrence of her cancer, a new tumor has been discovered.  Hearing this, plain old rage constricted my heart.  A short while later, I was on the phone with another young woman, who reached out to me through a mutual friend, learning of her recent ovarian cancer diagnosis, just five months after she’d finished treatment for breast cancer.  We talked for half an hour, swapping stories and diagnoses.  Her story, too, broke my heart a bit.  Still, it was remarkable to see, once again, how the common experience of cancer fosters such powerful, instantaneous connections between complete strangers.

It’s a fine line, a delicate balance, reaching out and into the lives of people whose entire world has been turned upside down by this disease.  I want  so much to be able to alleviate the fear and uncertainty and sense of isolation that I suspect most people battling cancer face, but I recognize the limits that exist.  I just have to trust my own instincts (as my husband so often reminds me) and the people with whom I am connecting.  But what I do know is that all of us together, sharing, uniting and gathering strength from one another, form a courageous front indeed.

I am not so naive as to think that our energy alone is going to cure this disease.  The science, the medicine, the screwed up biology – all of that is beyond me, and there are undoubtedly years to go before this evil disease is eradicated forever.  But I have to believe – I DO believe – that the simple act of forming connections with other patients and survivors, of finding the courage to talk about our experiences, and letting the world know the realities that we have faced, is a vital step toward that end.

So here’s to all of us – to those of us struggling to reach out of our own personal darkness while in the grip of active disease and treatment and recurrence.  To those of us just emerging from that darkness, learning to live again.  And to those of us who are ready to put on the gloves, or pick up the (virtual) pen, and fight with everything we have.  For regardless of where we are in our journey, we are indomitable, every one.

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thankful

Posted on November 29, 2009 by Emily

This year, as the Thanksgiving weekend comes to a close, it is essential to stop and actually “give thanks.”   It is the eve of the anniversary of my diagnosis.  Today is even my “MRI-iversary” – marking the date which, two years ago, I found myself, utterly without warning, trapped in that cylinder, with the buzzing and the ringing in my ears, undergoing the fateful imaging that started my cancer journey.  The darkness which enveloped me in that MRI machine was a harbinger of what was about to unfold.  And yet, for that moment, and what it set it motion, I am somehow thankful.

Last year, this anniversary season fairly knocked me over.  But today, it is 60 degrees and sunny and I feel unstoppable.  I had planned to take a good long run (time to start working off the turkey) but instead ended up cleaning up the backyard and stuffing our window boxes with festive holiday greens.  As is always the case when I work outside and get my hands in dirt, I felt invigorated and was reminded of how resilient my body is, and how far I have come.

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December 3 will mark two years since my first visit to my oncologist; two days after that, the anniversary of my diagnosis.  We just hosted Thanksgiving dinner for 18 people, and had what was unquestionably the best holiday weekend in memory.  Thanksgiving itself holds a lot of significance to me, as it was just days after the holiday that my cancer journey began in 2007.  So in many ways, I think of it as one of the bookends that marks my season of cancer.  And yet this year, it was as if all of the demons were exorcised.  I cooked the meal (with tremendous help from my sister), cleaned the house and played hostess.  And spent a joyful few days with my precious nephew, who I love more and more every time I am with him, if that is even possible.

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In the past, even before cancer, it would not be uncommon for me to come out of a holiday stretch feeling drained, and relieved to have it all behind me.  This year, I feel triumphant and energized, and actually looking forward to the next round of festivities. It’s a feeling I don’t entirely recognize, but which I am embracing wholeheartedly.

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I am approaching that point, it seems, where my body can almost forget that cancer ever happened.  My physical and emotional stamina now clearly exceeds that which I possessed before my illness.  But the idea that cancer is behind me, or feeling like it never happened, is in many ways a dangerous trap.  Not because I will ever stop being compliant with my checkups, or undergoing the surveillance which I need to in order to ensure my continuing good health, but because – for me, at least – holding on to what cancer did to me is the driving force that makes me want to keep enjoying my life as fully as possible, and to push myself into new challenges and experiences.  I am skeptical of this notion of “getting back to normal,” or having my life revert to the way it “used to be.”  Because for me, there is no such thing.  That version of me, that life, does not exist any more.  There is only now, and moving forward.

The two years that have passed since this journey began have encompassed both the best and the worst of my life.  Over seven hellish months, the life that I thought I knew was dismantled – first by the blow of my diagnosis, and then, more incrementally, by the torture of chemo.  When it was over, a brief moment of relief was followed by months of deep depression, which only intensified the harder I fought it.

But in the early months of 2009, the tide began to turn, and I honestly feel that since the thawing of spring, I have grown stronger, and more in love with being alive than I ever thought I could be.

This is the peculiar tension of life as a survivor, to which I always return, and which I feel I will never be able to understand or explain:  this blissful irony, this unexpected miracle, that cancer destroyed my life and then allowed me the chance to rebuild it into something better, more complete and more honest, than I ever otherwise would have known.  And for that, believe it or not, I am endlessly thankful.

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finally one of the cool kids (and all it took was a little bit of cancer)

Posted on November 14, 2009 by Emily

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This past week I found myself feeling, well, off.  My last post explains pretty plainly why this now-rare storm could of ill feelings settled over me.  During the nine years that I have worked in child welfare, I have – somehow, not even consciously – developed a way of distancing myself, in some measure, from the stories that I see.  I can probably count on one hand the number of cases that have left me in tears, or preoccupied when I am not at work.

Shantell’s story is the first that has touched me this way since I returned to work after surgery and treatment.  This moment was perhaps inevitable, given the nature of my work, and what I have been through with my illness.  Still, it took me off guard, and sent me, briefly, into a spiral that seemed in some way connected to the change of the seasons, and my up-coming diagnosis-versary.  This week, with its relentless gray skies, persistent drizzle, reminded me that summer is over, that the holidays are coming. Winter will soon be upon us.  The months that, two years ago, my entire life was up-ended.  And so, for a disorienting moment this past week, I found myself drowning in the peculiar mix of memory and emotion that is unique to life as a survivor.

Yesterday, though, a miracle, not to be taken lightly, began to unfold.  Friday morning, I sat in court, idling between cases.  I checked my email on my phone; a message from Hottie Bucks had just come through, as part of the on-going chain of notes which we Jackson campers have been exchanging.  In his note, HB offered some quick, wise thoughts about what it means to be an FD-er “released back into society” – brief anecdotes that brought a smile to my face, and made me want to start shaking my booty right there in Courtroom K.

He also shared a link to a piece from the New York Times by Dan Barry, which began like this:

“Within the chemotherapy alumni corps there exists a mutual respect not unlike the bond shared by veterans of war.”

Those words almost literally sent a chill down my spine.  And then, gradually, as I continued reading Barry’s ruminations on life during and after treatment, I felt the fog of the previous few days begin to lift.  The notion of “perspective” which Barry talks about was exactly what I needed to be reminded of in that moment.  Yes, my work is challenging, and often dispiriting.  And there is, in fact, no question that cosmic fairness is often largely  absent from this world we inhabit.

But I am here.  I am wearing a great new pair of black boots.  My mind is sharp.  I have love in my life, exploding all around me.  I am just so fortunate  – wait, what? – to have entered this incredible community of fighters, of champions, and to be so warmly embraced.

Maybe it is true that only the cool kids get cancer.  I don’t know how else to account for the insane number of bright, energetic, honest, warm and incredibly funny people I have met because of cancer.  These are the people whose words and reflections lift me out of the muck.

Yes, winter is coming.  Yes, December 5 is right around the corner.  Yes, I will put on a particular article of clothing and think about a precise moment during my illness when I pulled on that same shirt, and what I felt like then.  I will look in the mirror and see the ghost that I was during those unending months.

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But then I will read an email from Hottie Bucks, or I will get into a never-ending Google Chat with Double-Oh.  Or I will see another amazing blog entry from Fridge (have I mentioned lately how much I love Fridge?)  Or I will get a note from another ovarian cancer warrior who I have never met but feel profoundly connected to.  And my heart will just absolutely soar, and everything will look different.  Brighter.  The salve of our common courage will heal the psychic wounds that were in danger of re-opening.   I will know, with certainty, that I am not alone, that my pain is shared, understood, and that what I have endured has earned me inclusion in a league of truly extraordinary human beings.  Those who can hold the light and the dark in their hands, simultaneously, and be magic.

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there’s something wrong with this picture

Posted on November 10, 2009 by Emily

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Panic – mild and fleeting, but noticeable nonetheless – paid me an unexpected visit early this afternoon.

This seemingly unshakable feeling of optimism and positivity has cloaked me for months now.  I have felt invincible, buoyant.  It’s been amazing.

But today, someone peed in my cornflakes.

It  wasn’t until after I got home and was lingering in the shadows at the dog park, that I was able to figure out what had derailed me.  It was the harrowing story of my new, five month old client.

I will call her Shantell.  Her file landed on my desk late last week; it wasn’t until this morning that I had a moment to open it and learn about her.  Shantell was brought to the emergency room of a local hospital by her mother and maternal grandmother.  Her case, doctors would observe, constituted a near-fatality.  She was emaciated, looking more like a newborn than a five month old, and had festering ulcers all over her body.  There were cigarette burns on her face.  Four broken ribs were detected.  One of her hands was swollen and infected.  Eventually, she will require skin grafts in a half dozen places.

A social worker from our office visited Shantell at the hospital yesterday, and this morning, delivered several photographs of her to my file.  Her eyes are big and bright, but her checks are hollow, where they should be round and pudgy.  Her tiny hands are wrapped in splints and bandages.  In one of the photos, she is cradled in the arms of a hospital social worker, dressed in a soft pink onesie, a matching ribbon around her head, her innocence palpable.  To look at those pictures, and contemplate the horrors that were visited upon her, is nothing short of chilling – and heart-breaking.

In my work, I am continually called upon to stare depravity, tragedy and injustice directly in the face, without flinching.  But today, I flinched.  I looked at those pictures of Shantell, and I wanted to hurt someone.  And I wanted to rescue her.

More than that, though, I wanted to understand how the people who made this beautiful little child could treat the incredible gift they had been given with such inhuman cruelty and disregard.

My husband and I are eager to love and raise a child.  Thanks to cancer, I will never bear my own children.  I am hopeful, though, that one day in the not too distant future, a young life will enter our home and we will have the opportunity to realize this desire.

In the immediate aftermath of my diagnosis and surgery, I was gripped with an often debilitating anger and sadness.  My husband and I are loving, intelligent and kind. We would make brilliant parents.  WHY, I would weep and rage, WHY has this happened to us?  For a long while, I felt literally haunted by the ghosts of the children I would never have.

They say “time heals all wounds,” and that may, in fact, be true – in some limited way. Now, I think about the injustice I have suffered, and I measure it against all of the other injustices in the world.  It is not fair; no question.  But the logic of the elementary school playground doesn’t serve much purpose in managing the hard realities of adulthood.  So much of life is unfair.  This is the hand I have been dealt.  I will deal with it.  I will make my family some other way.

But then along comes Shantell, with her huge, innocent eyes, and all of that hard psychic work comes undone.  Once again, I am caught in the grip of what’s “fair.”  How can the world be like this?  Who creates a world where someone like me is denied the chance to have her own child, and but Shantell’s parents – caregivers, whomever – can treat their own precious baby like a piece of garbage?

It is wrong of me, I realize, to view Shantell’s story and my own on the same cosmic continuum.  Her misfortune is one thing; mine is another.  My cancer, and what it has taken from me, is not the overarching context in which all other human drama unfolds.  Today, though, for a few unsettling minutes, it felt that way.

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honoring it all

Posted on November 7, 2009 by Emily

Last night, over margaritas and enchiladas, I said to my husband, “I feel so good.  Is there something wrong with me?”

Working his way through his flight of tequila, he smiled and said, “Maybe it has to do with being alive?”

Certainly that is part of it.  Nothing makes you appreciate life quite like staring death in the face.  Now, inching right up to the two-year anniversary of the Grim Reaper’s visit to my front door, it’s not an overstatement to say that I feel better than I ever have in my life.

Words to describe my current state of mind:  strong.  Calm.  Energized.  Excited.  Optimistic.  The list goes on.  Old familiar feelings that are mysteriously absent:  fear.  Sadness.  Anger.  How did this happen?  Will it last?

I’ve already speculated a bit about the things that have brought me to this place. I do not take lightly the benefits of medication.  I am constantly grateful for the fact that I have an amazing life partner whose patience, humor and insight help me get through every day.  There is, for sure, no question, that my outlook has changed dramatically, and, it seems, permanently (to the extent that anything is permanent) since my First Descent at the end of August.  Still, even recognizing all of this, there is an inarticulable sense of magic and mystery to the way I have been transformed.

This morning, at the dog park, I sifted through my email while Lucy barked and ran and dug in the dirt.  I saw a notice, from Planet Cancer, that one of my fellow fighters had posted a new blog entry about moving out of her home and in with her parents, as she endures the end-stages of Stage IV ovarian cancer.  In an instant, I was choked with sadness – and that inescapable fear that comes with reading about someone who shares your type of cancer and is coming to their end of their fight.  The world around me stopped for a moment.  The brisk fall air, the wagging tails, the friendly chatter – all of it was suspended, as I went, in my mind, to the place where Alli now dwells.  Staring death squarely in the face, and, at least in the way she expresses herself – beautifully, honestly, simply – without fear.  Until seeing a human being do what she is doing right now, it’s hard to know what the word “hero” really means.

Two years ago, I walked into that same dog park, with Mike and Lucy, a few short hours after my first meeting with my oncologist.  We had already been the CVS and I had just popped my first Xanax.  I would be having surgery in just a few short days.  It was not 100% certain that I had cancer, but pretty damn close.  My entire world was collapsing around me.  We stood in the pool of light from the overhead lamp, the dogs circling and playing at our heels, and a dizziness filled my head.  I had no idea how much longer I would be alive.

Today, I am blessed to be be strong, cancer-free and full of life.  I am still subject to a relentless cycle of check-ups, bloodwork and pelvic exams (OH, the irony!)  Constant surveillance will be part of my life.  But I have boundless energy, I have rehabilitated myself almost completely after nearly an entire year of being beaten down and depleted, having the life-force drained out of me.  I am grateful for this new reality every single day.

It is so hard to know how to incorporate the knowledge of Alli’s cruel story into the landscape I now inhabit.  My good fortune to be on the plus-side of the harrowing statistics is not impervious to the devastating impact of stories like Alli’s.  As I read her words this morning, my chest constricted.  The anger rose in me.  Why??  Just plain fucking WHY???  Why should this beautiful young woman suffer like this?  The best I can do, I tell myself, is to treasure my own health, hold those less fortunate close to my heart, and keep fighting with everything I have to help create a world in which the brutality of cancer no longer devastates the lives of young people in this evil, illogical way.

Lucy and I later returned from the park, and I shared with Mike what I had just learned about Alli.  We took a moment together and acknowledged the unadulterated shittiness of it all.  Then, knowing that I needed to cleanse my emotional palate, he said, “Here, read this.  This will make you happy.”

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And he directed me to the latest musings from Fridge, a fellow camper from Jackson who is just starting to build her life after graduating from college, and three years after her own cancer diagnosis.  Fridge is a sweet, lovely young woman who I was delighted to share so much with during First Descents.  I think of her as the little sister I never had.

I read her recent post, and was thrilled to hear the positivity and excitement in her words.  It was clear, when she left camp at the end of the summer, that Fridge was struggling to sort out the direction her life would take, and that her cancer experience still had her in its relentless stranglehold.  So to see her now, engaging in her world, getting involved, taking her runs, filled me with this palpable, warm feeling.  She is not just “surviving.” She is out there, living and loving every minute.

It’s unclear to me exactly how to ride these waves – the currents of my own life, Alli’s tragedy, Fridge’s triumphs.  It’s disorienting, dizzying.  Hang on, I suppose, and honor it all.

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a virtual high-five for my beloved phils

Posted on November 5, 2009 by Emily

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Today, the interweb is filled to bursting with musings on the bittersweet end of the Phillies’ amazing 2009 playoff run.  But I just had to add my two cents.

The sentiment seems fairly universal: gratitude, with just a tinge of disappointment.  Surely, it’s a shame that our boys were unable to perform the near-impossible feat of repeating as WFC.  Still, they achieved something quite amazing by even surviving until November 4.  They defied all logic by ending up in the World Series without having a closer.  They overcame seemingly endless stretches of sub-.500 ball.  They battled and scraped the whole way.  Day after grueling day.  And I love them for it.

I read in several places, and I believe it’s true, that perhaps the greatest thing about the Phils over these past three seasons is the way they have captured the imagination and heart of the City of Brotherly Love.  There are few things these days that can draw people together around a common bond, and in that context, what this team has done is nothing short of amazing.

I am already counting the days until pitchers and catchers.

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on becoming a cancer fairy godmother

Posted on November 2, 2009 by Emily

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Last night’s brutal Phillies loss makes Friday seems about a million years ago.  Perhaps I should have made an attempt to commit that day’s thoughts to writing earlier, but now – Sunday afternoon, with time further warped due to the end of daylight savings (I am convinced time actually stopped sometime in the last few weeks, from the terrific and terrible beauty of the playoffs) – I finally have a moment to take a breath and reflect.

It both pleases and alarms me to realize that I have reached a point where I am no longer preoccupied with my own cancer every day.  A few weeks ago, when I sat sharing a drink with Hottie Bucks, he asked about the extent to which the fact of my cancer was still “present ” in my life.  I remember saying that I still feel angry and motivated by my cancer experience – angry about the loss which I associate with it, and motivated to try and turn the experience into something positive – particularly helping young adults who come after me to have more support as they combat the sense of isolation that accompanies a diagnosis.

All of that remains true.  What I recognize now, though, is how so much of the fear has dissipated, and resolved into something else.  Strength?  Wisdom?  Pure joy?  I am not quite sure how to characterize the feeling.  But it is surely different.

Perhaps a great deal of this is attributable to the miracle of pharmacology (three cheers for Zoloft!), and the even greater miracle of First Descents (I honestly don’t think I have experienced a single moment of feeling scared or hopeless since camp.)  Who knows.  The fact is that there is a lightness to my step now, a lightness that feels ingrained and enduring.

It is in the context of this almost Zen-like sense of calm and positivity that I found myself, unwittingly, transforming into a cancer Fairy Godmother last Friday.  In the last few weeks, I rather unexpectedly learned that two acquaintances are dealing with cancer and related scares.  One friend is dealing with what appears to be a recurrence of the cancer for which she was successfully treated many years ago.  The other is trying to get to the bottom of persistent gynecological issues that have prompted a referral to an oncologist (I actually put her in contact with my own amazing doctor.)

When these women approached me about their issues – looking for a sympathetic ear, for practical information about getting to the right doctor –  I felt deeply gratified.  Finally, I was able to derive something of value from the insane torment of my own diagnosis and treatment.  Somehow, being able to support and counsel these other young adults dealing with the frustration of a recurrence, the fear of a mysterious set of symptoms, revealed meaning in the madness.  And it added to my own sense of triumph over this wretched disease.

Coincidentally (or not), last Friday – a day when I had encounters with both of these women about their situations – I also had a long phone conversation with a woman, newly diagnosed with ovarian cancer, with whom I have been matched through Imerman Angels.  This is the second woman with whom I have been connected (in addition to having my own “angel” in the early days of my diagnosis), and the experience of talking to others who are in the immediate grip of the fear and uncertainly of a new diagnosis continues to feel powerful.  Not only does providing this kind of support and guidance to other young adults with cancer give me an opportunity to continue processing my own trauma, but it re-enforces the knowledge of how far I have come, and the strength I have gathered.  It never occurred to me, when I signed on to participate in Jonny’s program, that I would derive such profound benefits myself, or that the act of being an “angel” would in fact further my own healing.  I just wanted to do something for people who were going through an ordeal which I myself had survived.

The beauty of these relationships, and the act of supporting and tending to other young adults facing these nightmare scenarios, is that everyone gains, everyone is healed or helped in some measure.  And the connections we form are bigger and more powerful than any disease.

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