See Emily Play

been there, done that

Posted on September 14, 2009 by Emily

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Tomorrow, my cousin’s wife will be starting chemo for breast cancer. She was diagnosed a few months ago and has already undergone a partial mastectomy. When I learned about her illness, I posted briefly over at my Planet Cancer page (which I admit has been sorely neglected since setting up See Emily Play), and in the intervening months I have kept in intermittent contact with her over email. A few weeks ago, I was heartened when she reached out to me with specific questions about my own recovery. Answering those questions gave some focus to the nebulous feeling I had of wanting to do something, anything, to make this terrifying time easier for her. Suddenly, I was the one feeling helpless – wanting to do something, but not knowing exactly what.

Right after learning of her diagnosis, I felt this impulse to slap on the Cancer Cape and fly to her rescue. Then I stopped myself. Everyone is different. Her cancer is different, her life situation is different. She is in her 40’s, with three small boys. She has other people in her life to provide support. Just because I’ve been through cancer doesn’t mean I know everything.

When I hear about or from people who are newly diagnosed, I feel like all I want to do is provide something for them that I didn’t have when I was sick: a sense of perspective from another young adult who has been through it. I eventually found that place on Planet Cancer, but I didn’t have anyone like that in person, close to me, anyone I actually knew or could reach out to, who understood the unique experience of being a person in the prime of life who is stricken with this stupid fucking disease.

So right now I am walking a fine line. Chemo starts tomorrow for my cousin’s wife, and what I really want to do is pick up the phone and just tell her I am thinking about her and wishing her well and sending good vibes. Beyond that, I am not quite sure what to do. When I returned from Jackson, feeling 10 feet tall and completely unstoppable, like a bottomless pit of cancer-fighting energy, I talked about flying out to Minneapolis to help out with the kids, make some meals and just be “the one who gets it.” Now, though, I am not so sure. Time will tell.

What I realize is that it is vital to let people who are going through the cancer experience for the first time to feel their way, and to call the shots. The last thing I want to be is the buttinsky who thinks I know best just because I’ve been there, done that. One of the cruelest parts of cancer is how it robs us of our sense of control, and I certainly don’t want to do anything that’s going to contribute to that sensation.

I don’t have all the answers. But what I do have is the wealth of my own experience with cancer, and the fact that I have come out on the other side, perhaps even stronger than I was before I was diagnosed. And one thing I do know is that when you’re facing the fear and uncertainty of cancer and treatment, and the havoc it threatens to wreck with your body and your life and your soul, the one thing that helps is knowing that life will, in fact, go on.

Posted in cancer, Family, Life After Cancer | Tagged buttinsky, cancer, Cancer Cape, chemo, control, fear, Jackson Hole, Planet Cancer | Leave a comment

widening the embrace

Posted on September 13, 2009 by Emily

I have never thought of myself as having an addictive personality. In general, I can moderate my intake of things that are bad for me (ice cream, alcohol, television), and can avoid becoming obsessed with things that are good for me (exercise, eating well.) But as I enter Week Two after First Descents, I am feeling a bit like what I imagine someone feels like when she is wondering where her next line of coke is coming from.

For the most part, the euphoria I felt during our week in Jackson has been sustained, if in a somewhat muted form. I just feel happier. More positive, more forgiving. (OK, I did get a little frustrated with my fellow humans at the grocery store this afternoon, but I think that’s inevitable.) I want to hug people, refer to them as “sweetie” or “babe” and give them a pat on the arm when I pass them in the hall at work. I want people to feel the love radiating off of me, as if I am some kind of sun made of goodwill.

This feeling I owe almost entirely to my fellow campers and the incredible energy which they gave off while we were together, which I absorbed more completely than I realized while it was happening. For an entire week, I was a Love Sponge. (Insert sexually suggestive comment here, Hollywood.) All I want to do now is give it back to everyone around me, the people who make up my every day life, the people with whom I shared connections before I left for Jackson on August 30.

Friday night, we had our dearest friends over for Indian take-away and what was supposed to be a game of Texas Hold ’em, but which turned into just a blab session, getting caught up on the events of recent weeks. These are the two couples who formed our primary source of support while I was in treatment, and I consider them the essential core of our group of Cancer Allies – which was extensive, but which included a lot of people who were not available to take me to treatment, come over at a moment’s notice when I was feeling hysterical or bring us dinner. It was grounding, to say the least, to connect with these friends after a long summer when we all had trouble being in the same place at the same time, and in particular, after the week I spent in Jackson. When I view my life through a narrow lens, I feel like all I want and need is to be surrounded by other young people who have lived through or are living with cancer, and who understand – without me having to say anything – the trauma I have endured. But stepping back from that limited view, I realize how utterly vital it is for me to nurture my relationships with people who haven’t lived this same nightmare, but who love me and care for me and want to see me flourish as a survivor.

While the six of us sat around over plates of Chicken Tikka Masala and Saag Paneer, I talked about a vision for my future which involves bringing these worlds a little bit closer together. I want my fellow FD-ers who live in the area to have a chance to meet and connect with the people who saw me through the physical trauma of my illness, and who have been patient with me during my emotional readjustment to the land of the living.

I imagine the nicknames these dear people would be assigned. I think about Joe, who, the morning he came to the house to take me to one of my last out-patient treatments, sat patiently as I worked through my emotions and nausea before we headed to the hospital, and who, smilingly, ate a half-dozen Wegman’s chocolate chip cookies as he waited – and even permitted me to film his feeding frenzy, which was memorialized in one of our treatment videos. (Is there any doubt he would be dubbed “Cookie Monster?”)

I think about his beautiful wife, Rachel, who was completing her degree in acupuncture while I went through treatment, and who came to the house repeatedly to treat me – and, perhaps even more importantly, to hold me tight when I shook with rage and sadness. (“Needles,” no doubt.)

And dear Michael Pfeiffer- “Pf,” as he is affectionately known, to distinguish him from my own husband (also Michael) – who provided free psychotherapy without even knowing it, and who showed a compassion and a kindness during my treatment that was almost staggering. To this day, whenever I see him, I hug him extra-tight, and hope that he knows why. (“Dr. Freud,” perhaps.)

And of course the one and only Anne – crazy, high-strung, theatrical Anne – whose boisterous laugh forms a soundtrack to so much of my memory of being in treatment. For no matter how sad or depleted or hopeless I felt on any given day, the sight of her coming through the front door always managed to lift my spirits. (Not quite sure about her nickname, but my first instinct says, “Groucho.”)

These four dear friends were an essential part of the reason why I – and my stalwart husband – survived treatment, and why I am living more fully today, as I quickly approach the two-year anniversary of my diagnosis. It was hard, while in Jackson – falling in love with my fellow campers, feeling like we were the only souls on earth, and that we understood each other in a way that no one else ever could – to hold all of this other energy in my heart. The feelings engendered on the rock, on the hilltop, in the dining hall at 2 AM, seemed so huge, so immediate, so all-encompassing, that it was easy, in that moment, to lose sight of all of the people whose love and support enabled me to get there in the first place. One of things I am determined to do now, as I hold fast to the intense feelings from Jackson, is to widen the embrace, and make sure that these people to whom I owe so much know how deeply I love them.

Posted in cancer, Life After Cancer | Tagged acupuncture, Anne, cancer, Cookie Monster, Dr. Freud, First Descents, Hollywood, Indian food, Jackson Hole, Joe, Love Sponge, Pf, Rachel, raiding the kitchen, Texas Hold 'em, treatment | 2 Comments

tongue-tied

Posted on September 8, 2009 by Emily

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First Descents took me well outside of my comfort zone – as advertised – in ways that I expected (physically, socially), but this feeling that I have been left at a loss for words is definitely not something I anticipated.

This is supposed to be my snuggly, warm place, where I retreat to do one of the few things that usually comes effortlessly to me: writing. Now, though, four days after returning home, I feel utterly tongue-tied, like a love-struck teenager.

Today, life in the city carried on much as it did when I left town on August 30th. The lady who sells bamboo (WTF?) was in her usual spot on 15th Street outside the subway entrance. Some environmental activists were holding up a make-shift clothes line to make some kind of point about something. “Bernard,” in a sweatsuit and looking homeless, shoved his way ahead of me in line at the coffee shop to ask for his usual, some kind of peanut butter cookie that he clearly fancied.

Life in the office felt a bit dreary, and, as I was compelled to share with my fellow-campers mid-day, I was gripped by an almost uncontrollable urge to hijack the file cart sitting outside my office and start doing donuts right there on the 9th Floor of the Public Defender’s office. In Jackson, we were awash in joy, 24/7. Larry Boy said it best around that final campfire: Life isn’t always donuts. But why does it take the trauma of cancer to open your mind to the reality of donuts in the first place?

My mind has been buzzing ever since I left Double-oh-Seven at gate 46 at the Denver airport on Friday afternoon. Often, words come to me in particular moments, and I think to myself: there’s a start, there’s an image, something I can latch on to, to kick-start my brain and help me frame an experience, a feeling. But this week, with these people, has been a struggle to frame. Maybe that’s why I dove head-first into making that video almost as soon as I got home. The images were all there, the moments already framed by the lens. Point, shoot. It’s all in there, in those moments I watched endlessly as I edited – over and over, a recurring loop. It was so easy. Everything was right there, in front of me. We all lived it. All I had to do was match the image to the music.

What am I left with now? An array of emotions as vast and awe-inspiring as the Tetons we climbed. I suppose, though, that it’s only appropriate that an experience as massive and life-altering as our week with First Descents should leave me feeling so diminished, at least as far as my ability to express myself.

So, I am rendered speechless. There’s something else, too, though. My mind has been reaching, struggling for a point of reference, some way to organize what happened. And today, in a brief email exchange with one of my new friends, it came to me: we have a secret.

Thus, I was reminded: of a night in the woods, 20 years ago, when I was a free-wheeling acting student at the Pennsylvania Governor’s School for the Arts. My fellow actors and I were stepping lightly through the woods around Bloomsburg University, preparing for a performance of “A Midsummer Night’s Dream.” Our teacher had led us out into the darkness, into the twilight, so that we could tap into the essence of what it means to be immortal, a spirit, a sprite. Our interactions were wordless – we would touch occasionally, share a glance through the darkness, and connect in some way that was beyond words. It was inarticulable, what we all shared, but we knew it was there. We had a secret. We were immortal.

The late nights I spent on the hilltop in Jackson with my fellow campers, overlooking the valley, with the Tetons on the horizon, contained strong echoes of that evening in the woods all those years ago. Granted, this time we had language – mostly crass – and laughter, endless laughter. But it was the unspoken thing, the thread that connected us all to each other, the reality of our experience with illness, that reverberated most powerfully through the darkness, that most brilliantly reflected the moon’s light. In facing death, we had connected with our immortal selves.

I recognize the irony. My fellow campers in Jackson and I all share the common nightmare of cancer – not just cancer, but cancer in our youth, in our young adulthood. We have all felt the immediacy and vibrancy of life – which is supposed to be stretched out ahead of us, seemingly endlessly – torn out from under us. We have all laid in hospital beds, crying ourselves to sleep, feeling like the last, lost soul in the entire universe. We have struggled and writhed in pain, we have beat our breasts (some of us have even had them removed), we have raged, raged, raged. We have felt fear and anger and sadness that most of our peers will never know. But through that awful prism, we have come to a place of absolute, perfect bliss.

We have done donuts. We have regressed. We have embraced. We have thrilled. We have climbed, higher than we ever knew was possible.

To say that we have been to the mountain top doesn’t even begin to explain the gift we have been given.

I tried, stumblingly, our last night in Jackson, around the campfire, to articulate this beautiful, excruciating tension I feel so often when I think about my illness: how can something so dark yield so much beauty?

I will never understand. I will just give thanks.

Posted in cancer, Life After Cancer, Vacation, Writing | Tagged campfire, cancer, donuts, Double-Oh-Seven, First Descent, Governor's School, immortality, Jackson Hole, Larry Boy, Midsummer Night's Dream, secrets | 10 Comments

First Descents: Stills

Posted on September 6, 2009 by Emily

Still shots from First Descents, Jackson, WY.

Posted in cancer, Life After Cancer, Photography, Vacation | Leave a comment

first descents, jackson, WY: Aug 30 – Sept 4, 2009

Posted on September 6, 2009 by admin

They say a picture is worth a thousand words. By that measure, it would take me several volumes and likely many years to capture in writing what happened in Jackson this past week. So I am starting with this video. I only hope it begins to capture some of the magic we all shared. Cancer campers, I love you all.

[flashvideo file=http://mpomy.com/Videos/fdwyoming.m4v /]

Posted in cancer, Humor, Life After Cancer, Vacation | Tagged cancer, First Descents, rock-climbing | 17 Comments

sliced and diced

Posted on August 27, 2009 by Emily

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Every so often, usually when I am falling asleep, waking up, or lying on the table getting acupuncture, half-conscious, I am gripped by a feeling of pure, unadulterated incredulity about the fact of my cancer. More specifically, I think about the fact that my body was cut open and organs ripped out of me, and I just can’t fucking believe it. It’s insane. I look at the scar on my belly every day – sometimes I even run my finger along it as I lay in bed at night, reading. It doesn’t bother me, or gross me out. I am totally used to it. I can’t even remember what my abdomen used to look like before my surgeries.

But that’s not when I think about being sliced open. Which makes sense, I guess; I can’t really hold the notion of what my body went through during every conscious moment. It would drive me completely mental. Instead, when my guard is down, when I am in that fuzzy in-between state, I get in touch with this particular species of violence which cancer inflicted on my body. (Chemo, of course, being an altogether different kind of nightmare.)

Last night I dreamed about being cut open again, but it wasn’t because I had cancer or for more surgery. It was some kind of regular “check-up” – but for some reason my onc (a tall, Aryan-looking man – definitely not my actual oncologist) said I he was going to need to reopen my incision. Let’s just say I went a bit nuts when faced with this information. Luckily, I woke up before he could sharpen his scalpel and start cutting.

I remember an acupuncture treatment last winter, when I was still feeling raw – REALLY raw, as in, I hadn’t yet developed my close personal relationship with Zoloft. My dear friend who treats me decided to place some needles on my belly. She inserted them, and I immediately felt this shudder of terror pass through me. In that instant I was right back on the operating table, waiting to be cut. I saw myself from above, imagined my abdomen spread open, my internal organs laid bare, and the cancer growing on my ovary. I pictured hands reaching into me, surgical instruments prodding me. And the tears just rolled down my cheeks as I lay there on the table.

People have surgery all the time, I know. My trauma is no more or less significant than anyone else’s. But the brutality of it all, of that particular part of my cancer experience, never ceases to amaze me.

Posted in cancer, Life After Cancer | Tagged acupuncture, cancer, surgery, Zoloft | 1 Comment

cognitive dissonance

Posted on August 23, 2009 by Emily

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This is not the time to do this, but I need to start at least. I am fried after this weekend, spent with two new friends – a wonderful young couple – from cancerland. A whirlwind, a welcoming. Apparently I should write a book. New people, new perspectives. Unknown. Expanding outward into a world shaped so much by cancer, which I loathe, but expanding in positive and powerful ways. I do not know how much I want to let cancer take over my life. This is not what I ever saw happening; how could I know?

Do I want to give up being a lawyer to devote my life to changing the experience of cancer for other young adult patients? Do I want to give up years of practice and training to chart a course that is largely unknown and unpredictable -and most frightening of all, that is defined by my own cancer odyssey? I want so badly to leave this part of my life behind – to move on, move away, get back to the life I thought I had. I don’t want cancer to capsize my life. I don’t want to bury all of my other passions and skills because of the random accident of my illness. Why should I let my illness take over the rest of my life, after it has already robbed me of so much?

The part I can’t figure out is that there might be a way for cancer to transform my life for the good – in ways I cannot yet see or define. Mike said, “Look at Heidi. She is partying in Dublin with Lance Armstrong right now because of cancer. How is that a bad thing?” Well of course it sounds fucking awesome, and it’s fabulous that people like Heidi have found a way to translate their own cancer experience into power and insight for those who come after them. But I don’t know how to do that, and I don’t even know if I want to.

Right now, my life is expanding and changing in so many ways, most of them because of cancer. When I was sick, my life had contracted to the smallest possible size, the most microscopic of meanings: simply surviving. I lost touch with so much of my own sense of capability and energy and strength. I was just trying to keep on living, however dysfunctionally.

Now, I am spending epic weekends with new friends who share in the knowledge of what it means to be young, with cancer, trying to figure out how to live. Next week I will be in Wyoming with a group of complete strangers, also survivors, climbing rocks in the Grand Tetons. Experiences I thought I would never have. People I otherwise would never have met. A whole new frame of reference for understanding who I am, my place in the world and what I am meant to be doing with my time on earth. How can I be so angry at cancer, and so grateful to have the opportunity to engage in this kind of self-discovery? The clash of these feelings inside of me makes me feel confused and a bit torn apart, but also very much alive. Maybe more than I ever was before.

Posted in Life After Cancer | Tagged cancer, cognitive dissonance, existential angst, Grand Tetons | 1 Comment

serious (or funny?) as cancer

Posted on August 20, 2009 by Emily

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Is cancer funny? Let’s see: I’m funny, and I had cancer. By the transitive property, does that make cancer funny? Not quite sure.

This question has been on my mind a lot in recent days, after seeing Judd Apatow’s sweet, sincere and yes, very funny FUNNY PEOPLE. It stars Adam Sandler in a remarkable, sad and I think very true performance as a larger-than-life Hollywood star who lives alone in an enormous house. His character, George Simmons, is diagnosed with AML in the film’s first minutes, is given a very grim prognosis and put on experimental medication (from Canada, of course.) Some people might call this film a love-letter to the life of the stand-up comedy scene in LA, but for me (SURPRISE!) it was really about cancer, how it turns your life upside-down and what it means to try and reclaim your sense of self after the smoke clears.

I admit to squirming a bit in the film’s opening sequence. Watching George receive the news of his diagnosis, my chest tightened a bit and I found myself shifting uneasily in my seat. I could see his mind going blank as his doctor blathered on, spouting medical terminology and looking grim-faced. (Been there, done that.) While I (thankfully) wasn’t swarmed with fans who wanted to take my picture when I came out of my oncologist’s office on that dark night in December 2007, there was something alarmingly familiar about the far-off look in Sandler’s eye as he smiled emptily while putting his arm around a young admirer, just moments after his diagnosis.

FUNNY PEOPLE, as you might expect, is a very funny movie. But the humor comes mostly from a lot of penis and Jewish jokes, and the easy banter that emerges among the very talented actors. The cancer plot, however, is largely unfunny, and depicted with an unsparing truthfulness. George Simmons moves through despair, anger and ultimately, a kind of cynical (and slightly humorous) resignation. The gore of treatment is confined to a relatively short montage of images – George puking in the toilet, staring blankly at the ceiling while having various needles stuck in his body, having a terrfied outburst when he finally realizes how the drugs are making him sicker than the cancer – but the emotional toll of his diagnosis is woven seamlessly through the story, as we watch him fumble his way back to “life” after he’s given a second chance. He realizes that people treat him differently once they think that his cancer experience is “over” (HA!), and that it’s not so easy to return to the land of the living after you have stared death in the face.

One of the things I loved most about the film was the ulimate amibiguity of what we are led to believe will happen with George and his health after the credits roll. True, he’s given a new lease on life after a successful course of Canadian miracle drugs, but what interested me was the way he chose to share – or not share – his good news with certain people as opposed to others. A joke was made about how he didn’t want to “jinx” it, but the truth is, I think most people who have survived cancer can relate to that idea – joke or no joke. No matter how many perfect rounds of bloodwork I get, and no matter how far I get from my diagnosis, there is always – lurking in the background – that sense of waiting for the other shoe to drop. I don’t know if that was Apatow’s intent, but whether by accident or not, it is an important part of the cancer odyessy that I believe he got exactly right.

My sister’s neighbor is getting ready to shoot a “comedy” about colon cancer, starring Kate Hudson. While I have an incredibly funny cancer pal who is living with stage IV colon cancer, I am not quite sure how this project will end up. But I am all for movies that bring cancer into the light of day, and that are truthful – and maybe even a little funny – in the process.

Posted in cancer, Film, Humor | Tagged Adam Sandler, cancer, Film, Funny People, Humor, Judd Apatow | 1 Comment

happy birthday to me

Posted on August 16, 2009 by Emily

Birthdays, like most things, feel a bit different after cancer. Before cancer, I was sometimes subject to a phenomenon my husband and I refer to as the “birthday blues.” This could take many forms, usually involving a thought pattern that would go something like, “I’m one year older and what, exactly, have I done with my life? Why don’t more people call me? Why isn’t someone throwing me a surprise party? Why can’t I get nicer presents?” And other assorted self-pitying, gloomy nonsense. (A common affliction, I think, for the August baby. I think I have some kind of PTSD from being perpetually thwarted in my childhood attempts to have a party because my friends were always on vacation on my birthday.)

Now, my birthday is just another day I am happy to be alive and feeling well – but maybe with sprinkles on top. It’s lovely and affirming to get calls from my family, text messages from friends, and this year, for the first time, all kinds of good wishes from people from my Facebook universe. (As far as that last group goes, I kind of have to wonder what is motivating these people – many of whom I never have any kind of meaningful sustained contact with – to wish me a happy birthday. Is it because they are glad I am not dead? Is it because they feel sorry for me for what I have been through?) But honestly, the best part of today may have been going to the gym first thing and having the longest run I’ve had in over a month, and feeling strong and pumped at the end. Cancer may have altered the way people relate to me (where were all of these people before I got sick?), but it has also fundamentally altered the way I relate to myself. Priorities have definitely changed.

So, as the birthday proper winds down, I am, perhaps with a little more reflexivity than usual, taking stock of my good fortune, and appreciating the love which surrounds me. I am still not quite sure how to explain the ways in which cancer has changed the way I feel about being one year older, or how I feel about the more peripheral relationships in my life, but I am certainly glad I am here to try and figure it out.

Posted in Life After Cancer | Tagged birthday, cancer, Facebook, running | Leave a comment

Bay Head Pics

Posted on August 15, 2009 by Emily

In spite of all my griping and illin’ on Day One (see last post), it ended up being a lovely time in Bay Head with the family. And of course it was an extra-special treat to get to share an early birthday celebration with Oscar. Special thanks to the folks for putting it all together and treating us to such a great getaway.

Posted in Family, Vacation | Tagged Bay Head, birthday, pictures, Vacation | Leave a comment