I’m sitting here at the office trying to get some work done (yes, yes, I realize it’s midnight – don’t ask) but I can’t focus. I am fixated on the awful news I got a few hours ago. My dear friend Matt was walking on the beach yesterday with his wife Jill, down near Cape Hatteras, NC. It was hot and they decided to go for a swim to cool off. They got caught in a riptide and couldn’t get back in. It was after 6pm and all of the lifeguards had gone home for the day. Passerby found them floating face down in the water and rescue crews airlifted to them to the hospital.
Matt survived. Jill did not. She was six months pregnant and had just found out that they were expecting a little girl in November.
When I googled Jill’s name to try and get more information, the first four links that came up were to stories came up with some version of the headline “pregnant woman drowns off NC”. The fifth link is to their online baby registry. The second-to-last post on Matt’s Facebook page is from Jill talking about how excited they are to be having a girl. His profile says he is married to Jill Bailey Chenet. Yesterday he was.
Before this happened, I was obsessed with that crazy movie theater shooting in Denver. As with most horrific mass killings that pivot around people doing things I can picture myself doing (going to work on a beautiful Tuesday morning, waiting in line to see a congresswoman, seeing a late night show), I slip into a vortex where all I can do is consume information. I think I am not unlike a lot of other Americans in this way. Information is power. And when life events unfold in a way that make us feel our inherent powerlessness, we want to tip the balance, to re-take the reigns, to create a sense of steadiness -- no matter how hollow.
Matt is a surfer who grew up around the water. He knows his way around a wave. Knowing Matt and how much he loves the ocean, it’s hard to even imagine what might have happened. In my mind I can’t stop picturing Jill tiring out from fighting the current as they try to wait out the rip tide, Matt holding her up and treading water for both of them until he just can’t anymore. How people will tell him he is “lucky” to be alive, but probably for a long time to come he will wish, if he couldn’t have saved them both, that he had slipped away with her.
I didn’t know Jill very well. I met her once, 3 years ago when she and Matt came to a screening of the documentary I produced. In our brief encounter I could tell immdiately that she was kind and lovely and made my friend Matt very, very happy. Maybe she knew her way around a wave too. I don’t know.
But I do know it must felt like the most natural thing in the world to go
for a quick swim before dinner at the beach you vacation at every year. Just like it’s the most normal thing in the world to go see a movie at midnight…
Nowhere feels safe. That’s the cliché in moments like these. And honestly, in most the literal sense, it’s true. At any point, anyone or anything can act outside of the order of things, outside our expectations -- with devastating consequences.
My heart is breaking for my friend and I am once again this week trying to make sense out of the inherently senseless, but this time the senseless is much more personal. What I am realizing is this: we just have two choices, to live as if everything is scary because we think could die or to live as if nothing is scary because we know at some point we will.
In the Rat Race of our work lives information might be power, but in all the ways that it really counts, embracing life from a place of love and joy and gratitude is most the powerful thing we can possibly do. That and give more hugs. Hugs are important.
There's this line of greeting cards I love called, appropriately enough, Curly Girl Designs
. My own curls are back in full force (even more so on humid days) and last weekend I pulled my hair into a ponytail for the first time in two years. But I digress… Name aside, I love Curly Girl greeting cards because they offer up pearls of wisdom like "I am fairly certain that given a cape and a nice tiara, I could save the world" or "Life is too short not to have a little umbrella in your drink."
This past weekend, I was in a sweet little shop in Galena, IL where I was celebrating the wedding of my old roommate Ami Copeland. Nestled amongst the rubber duckies dressed as a bikers and band-aids that looked like strips of bacon I stumbled across a whole treasure trove of Curly Girl cards, including one that said "Sometimes 'right back where you started from' is right where you belong." Once again CG, you know just the way to my heart.
There's been a lot lately that feels very "full circle". And I'm not just talking about the ponytail.
Two weeks ago I co-hosted a party for my friend Michi's new book How I Lost My Uterus and Found My Voice
. Michi and I were childhood best friends who did everything together. We started to drift apart after I went off to college, but hung in through our early 20's (long enough for me to help her plan her first wedding and bury her father). But we couldn't stop the gravitational pull of opposite planets that was taking us in different directions, and by the time Michi found out she had cervical cancer at age 26, I had no idea she was sick.
Fast forward 10 years to my own mother's death. Michi reached out (thank you, Facebook) to send her condolences. She became a real source of comfort in that way that only people who also grew up with your parents and knew them "back when" can be.
Six months later I was diagnosed with cancer myself and when Michi gave me her unfinished and unpublished memoir to read as a source of information and encouragement, I suggested she hire an editor to help her refine it, flesh it out and get it published. She asked if I would do it. So I did -- in between chemo treatments. We spent months patiently going through Michi's book line by line, page by page and version by version, crafting and honing the story of her own dance with the dragon.
A year later I am cancer-free, her book is on Amazon.com, and Michi and I are now closer than ever. We're close in a new way, forged by time and wisdom and growing up, and looking death in the face and saying "not me, not yet, not now".
A week after the book party I found out I had been elected to board of directors of Women in Film and Video. For those of you who fall into that "knew me back when" category you will know that aside from Democratic politics, WIFV was my mom's big life passion. She also served on the board of directors and then later on the advisory board and frequently roped me into licking envelopes, taking tickets at film festivals and working the sign-in table at events.
When President Sandy Cannon-Brown heard I had thrown my hat in the ring for a board seat she said both "you know we all loved your mom" and "I do believe you are our first legacy candidate." It's a legacy I"m intensely, fiercely proud of. The whole thing feels very Sophoclean, but in a good way. Now when I show up at a WIFV event, it won't be because someone bribed me by promising me I could use the car for the weekend.
As I write this, I'm sitting in my new, fancy 5th floor apartment with a beautiful view of the trees that line Connecticut Avenue. And I can't help but smile at the fact that I'm living a mere four blocks where from where it all started 15 years ago when I struck out on my own in my first big-girl apartment, a baby-sized DSP living in an English basement, braving the urban jungle. Okay fine, Cleveland Park doesn't really quality as an "urban jungle" but it is technically in the city and once I skinned my nose outside the Seven-Eleven on the corner trying out my kickboxing moves after a few too many cocktails, which really, really hurt -- and not just my pride.
Anyway, the point is, I'm back where I started. And I have to say, it feels pretty cathartic. Sometimes to fully understand how far you've come, you need to look out over the landscape of your life from the same vantage point but with15 years under you belt. The scenery is more or less the same, but the glasses you're wearing allow to see it all in a very different way. It may feel like starting over, but it's really about appreciating where you've been, how it's shaped you, has left imprints on your soul, on the world, on the people around you. How nothing and everything can be the same all at once.
"Sometimes 'right back where you started from' is right where you belong." Sometimes, it is. And that card? I bought and framed it.
I did a 5k walk/run for brain tumor research this morning. I was apparently running for Steve, who I’ve never actually met, but since he’s my co-worker’s father-in-law and she asked, I was happy to oblige and join her team. My stepmom actually had a non-malignant brain tumor removed when I was in college, so it’s a cause near and dear to my heart. But I didn't really think it applied to me, until I met Team Glen.
When I arrived at Freedom Plaza, it was clear this was one part race and one part party. Diverse throngs of people from every walk of life mobbed Pennsylvania Avenue. Dads pushing strollers and women running with their dogs. Little kids jogging along side their parents. College kids with their earbuds in, less focused on the bonding than the personal record. One guy even had an artificial leg (I’m pretty sure he ended up beating me too, but let’s not dwell on that.)
Nearly everyone there was running for *someone* whether they had written that person’s name in sharpie on their race bib or had actually gone to the lengths of having team shirts made. I learned that “in memory of” means that someone died and “in celebration of” means they looked the dragon in the eye and lived to tell. I passed whole gangs from groups with names like Rob’s Runners, Lisa’s PittCrew and Team Terri. Some just said “In Memory of Ryan” or “running for my grandma”. Others had telltale dates – 12/14/69 –5/9/11, above smiling photos that said person pictured on said shirt had fought the devil and lost. One team, Sara's Angles, had shirts emblazoned with a picture of a bubbly and smiling four year-old girl in a sundress.
Since I rolled in about 30 seconds before the starting gun went off, it was a little hard to find my compatriots in the crowd. I ended up run/walking most of the race by myself, which, as it turns out, was probably a blessing in disguise, because I was not prepared to spend most of the race choking back tears.
Okay, let’s face it, I’m pretty out of shape, so I was prepared for the possibility of some crying but I figured it would come from a muscle cramp or something. I didn’t realize the t-shirts would get me.
But then again, that happens now. I hear of someone who has recently been diagnosed (like my friend Kate’s husband who’s battling a really nasty form of Leukemia – their four kids are ages 10 months to 6 years), someone who has survived, and those who haven’t, and I can feel the emotion well up. It starts in my gut and rolls all the way up to my throat until I have to bite my lip and think of spreadsheets to keep from crying.
In these moments, it hits me: I had cancer. Like the thing that *kills* people.
I realize for all of you who know and love me, this hardly counts as breaking news. At this point it’s like me telling you “I’m from Michigan!”, like it had just occurred to me. But sometimes I forget. Getting through meant never really admitting to myself the full extent of what was happening. So, as you can imagine, I don't really like to think much about it now, either. But sometimes I don't really have much choice on that score.
This is exactly what happened, when I rounded the corner on Constitution Avenue and caught sight of a whole extended family wearing shirts that read "Team Glen." As I looked at the screenprinted photo of Glen in his shades, relaxing on the deck of a boat, holding a beer and smiling up at me, it hit me like a brick to the face:
I am Glen and Glen is me.
The tears that came then, sprang from the sharp thing that is part realization and part reminder that I went to hell, danced with death and came out the other side. And that Glen did not. That both of those things remind me that my life is simultaneously both permanently altered and stunningly blessed.
As we ran past the Botanical Gardens over the one mile mark, I was overcome by a sudden urge to grab every member of Team Glen then and hug them. I wanted to tell them I know how brave he must have been. How unfair it is. But also how they've really captured his spirit in those t-shirts. How their love is a
living testament to the fact that he must have been a pretty great guy that
lived a pretty great life.
I did not grab them, mostly because I don’t want to scare the children (or get arrested and miss out on those free juice bars at the finish line I see people who ran faster than me walking around with.) So I keep my hands to myself. But I do silently say a little prayer – sending loving comforty kinda vibes to Glen’s people, and thanks to the universe for both forcing me into the fire and seeing me out the other side.
“Hi, my name is Erin and I had Hodgkins Lymphoma. Last month was the one year anniversary of me finishing chemo. This is my first meeting.”
That’s how I introduced myself at the Young Adults with Cancer Support Group last night. That’s right people; I went to a support group
. Just like the folks with gambling problems and eating disorders and those who hide vodka bottles under the mattress and drink mouthwash when they can’t get booze. That’s me.
I never thought it would come to this. I made it through cancer and more or less felt pretty lucky. Or at least that’s what I have been telling myself. And everyone else.
Honestly, I was
pretty lucky. I knew I wasn’t going to die (okay, well once I got the diagnosis -- before that month-long limbo period where we weren’t sure exactly what kind of cancer I had or didn’t have, and I had to ban my dad from Web MD and the internet in general because he was scaring the beejeezus out of me, himself and anyone else in the family who had the misfortune to call him ask how things were going.)
And I made it through, out the other side, cancer-free. There was the crushing nausea, horrible metallic taste, the port surgery and the scar, the extreme fatigue and the Neupogen-induced joint paint, the hair loss and the lovely sunken eyes and yellow pallor and the extreme itching in my fingers and the ridiculous chemical burns on my arms, chest and stomach caused by the chemo drugs seeping through my skin from the inside
….but I’m telling you, by cancer standards, I got off pretty easy.
You would think if I was going to feel sad or confused or pissed off or anxious, it would have happened while I was actually experiencing
said cadre of symptoms. But here I am one year out. The dust has settled and the chemo is over and my hair is growing back all nice and curly and I finally have energy to travel and work and see my friends. Now
is when I should really feel lucky.
Except right now I’m just mostly… well let’s face it, I’m pissed off. And kind of depressed. I cry for no apparent reason. I feel irritable and cranky, and lost. Like two of the best, most productive, vibrant, creative, set-the-world-on-fire years of my life were stolen from me. Like I wuz robbed.
Here’s the the thing: at the beginning of January 2010, I was at the pinnacle of my production career. I was building a fierce New York City network of other creative badasses. I was assembling all of the gas cans and TNT I needed to set said world on fire.
That was then. Now I just feel sort of…used up.
But luckily for me the goddesses above got my back and send me angels in the form of amazingly wise and awesome people like my friend Deilia. This is why after I went from happily munching my edamame and avocado salad at Corner Bakery on Monday, to crying and talking about how I don’t really want to celebrate my birthday this year because nothing feels joyful or worthy of donning a birthday hat, Deilia sent me a link. “Just thought you might want to take a look,” her note said.
And that, my friends, is how I ended up at the Young Adults with Cancer Support Group.
The crowd at the Smith Center for Healing and the Arts
was 15 strong – men and women each with their own story and all at different points in their cancer journey. One woman who can’t be a day over 32 had just been diagnosed with breast cancer and is having a double mastectomy next Tuesday. Then chemo. Then radiation. The guy next to her said he has been in remission for 20 years. The woman across from him told she was 36 -- my age -- and almost done with treatment for rectal cancer.
I’ll just let you ruminate on that for a minute.
Let’s just say, that got me to stop feeling sorry for myself real quick.
The woman next to me had 7 surgeries for melanoma in six months last year and she looks amazing. I’m serious. If she weren’t at the Smith Center for Healing and the Arts for the Young Adults with Cancer Support Group, you’d never even know.
Then there’s the guy that had esophageal cancer last fall and was given a 10% chance of living. He survived and his scans immediately after looked totally clear, but he’s petrified of going for his 6-month check-in because with esophageal cancer there’s a 50% chance of a relapse. Then he told us “the doctor said if it reoccurs, I’m toast. He literally said that.”
There were two other women there who have been through Hodgkins Lymphoma - my people!
- but what really connects us all is that we’ve had this experience that less than 1% of the population can relate to. Literally. And after the third person in the group said some version of "everyone tells me I'm lucky and deep down I know they're right, but I just want to punch them in the face," I knew I was in the right place.
They compared the psychological fallout to PTSD -- as in I look fine, but I still feel real, real broken. There were a lot of tears and a lot of hugs. We did not sing Kumbaya but they did serve snacks, so that was nice. Mostly, I left feeling grateful to have met so many fabulous people and relieved beyond words to know that it’s not just me.
And then on my walk home, I got one of those nice reminders the universe is so fond of giving out.
My friend Dan, who I haven’t talked to in three years, called. He’s a cameraman who I met on the film festival circuit back in ’09 right as I was setting about that whole lighting the world on fire business.
He shot one of my favorite docs of all time called The Way We Get By
(you should totally rent it from Netflix) and is now working on his own project. He’s three years into production on a film that sounds like it’s going to be brilliant.
As usual, just like clockwork, the isolation, doubt and fear that all independent filmmakers experience at some point in the process, has kicked in. It feels like an unrelenting pit in your stomach accompanied by a little demon on your shoulder saying “You fool! You’ve invested all of your free time and money into creating an unwatchable piece of garbage. Who do you think you are?”
So I did what any good friend and fellow creative worth her salt would do – I talked him off the ledge.
I explained how we had felt exactly the same way when we made MINE, about six weeks before we got accepted to SXSW and four months before we won the audience award. I reminded him that being an independent filmmaker is important work. That the fear is normal. And that it takes real balls (or in my case, ovaries) to make a movie. That he might be freaking out, but he’s incredibly brave. That his idea sounds really good and deep down he knows
it’s good, or he wouldn’t have embarked on the journey.
Dan was quiet for a minute and then he said “Thank you. This is just what I needed to hear,” And then, “I just have so much respect for you and your work that I knew I needed to talk to you. I knew you would have the answer. This means a lot coming from you.”
Whoa. Thanks Dan. Thanks universe. Thanks for the reminder of two very important things:
1. I may have been through the wringer, but I am still a kick-ass, smart, creative goddess.
2. No matter who you are, or where you might be on your life path, everyone needs a support group now and then.
Now pass me that birthday hat. I got some celebratin’ to get to.
About this time two years ago, a group of us gathered at Le Madeleine on Rockville Pike to take over the private dining room affectionately known as the “wine cave” for my mom’s annual holiday party. In years past the Rossenmacher holiday soiree took place at the townhouse I had grown up in but mom had steadily downsized over the course of four moves and her tiny apartment in Kensington simply didn’t have the pomp and grandeur of the wine cave.
My mom loved the place - she had even intimated that we might hold Annie’s baby shower there slated for the following March. The night of the Christmas party we listened to music on the Bose stereo mom brought in for the occasion. Towards the end of the night she and I did a karaoke-style rendition of Janis Joplin’s “Mercedes Benz
” as we pretended to drink out of little bottles of cheap red wine. Someone snapped a picture and I have it on my desk.
We, of course, had no way of knowing that just 2 weeks later she'd be gone. That we’d be right back in the wine cave, mom's beloved chocolate fountain flowing in the background as we toasted her amazing life with that same cheap red wine, and mourned her passing.
The night of the party mom had asked everyone to bring an unwrapped toy for House of Ruth
, a shelter in DC for women and their children. The guests dutifully obliged and deposited teddy bears and board games and books into the box mom brought. I took the box home, promising to drop it off, but after I learned House of Ruth doesn’t take toys, I put the box in the corner of Annie’s spare bedroom hoping to find another proper home for its contents. Two weeks later the bottom fell out of our world and the box would sit, untouched for two years. Every time I caught sight of it, those stuffed bears with their ears sticking up and out reminded me of how awesome and thoughtful and strong my mother was – how she fought for the little guy her whole life. How finding a good home for those toys would honor her memory. And then I would forget about it until I saw it again, at which point I would feel that familiar little stab in the heart that is equal parts gratitude and regret.
About this time last week, I had my first check-up with Dr. Fishman since that final PET scan, the one that said I was cancer free. I now work at an office at 21st and M about four blocks from Dr. Fishman. The scenery on the walk over is the same – same bagel shop where Charlie and Annie would go and get lunch for me and for the nurses, same parking garage where we would wait for Rocinante the wonder Jeep to come forth and carry us home, same breast feeding center in the basement filled with new mothers and their little ones – all of that new life and hope a stark juxtaposition to the way I felt so used up and one foot in front of the other. I don’t eat at that bagel shop anymore, but I’m a regular at the salad joint next store. And now seeing those babies just makes me smile. Today the neighborhood around Dr. Fishman's office is all about possibility and moving forward and happy hour.
Most of the time I almost forget about that whole cancer thing. Almost.
Last week, just before I saw Dr. F, I got an email from one of the professional list serves that flood my inbox, from some guy named Lorenz. He and his girlfriend were volunteering to collect and distribute toys to kids at the Extension Center
. They needed to collect 200 toys in seven days. Could anyone help? His email signature featured a quote from Khalil Gibran, one of my mom’s favorite poets. I remembered the box and sent him an email. We met on the street in DC and I loaded the managerie into his car. As he drove away, all I could see through the back windshield was so many sets of fuzzy, stuffed ears sticking out of the top of box.
After the event that Saturday, he sent me a bunch of pictures, including the one posted above here.
It was a good reminder that life has a funny way of coming full circle - that you can walk by the same buildings, but see them through such different eyes, depending on the day, or the month, or the year. Mostly it was a good reminder that even if it doesn't happen at the time or in the way that we expected, sooner or later all of us (every stuffed bear and every girl) winds up exactly where we’re supposed to be.
We moved out of our apartment yesterday. It served us well for 14 months, but neither Charlie nor I ever really loved it. We’re both city kids at heart who want to be able to walk home from the bar at midnight and be in bed by 12:15, or come home from work, change and then pop back out for dinner, or a screening, or as my mom used to love to say, to “rendezvous” with friends. So that apartment, in all of its quiet, suburban, manicured lawn, proximity to the mall glory, no longer fits.
It was, however, perfect for convalescing during chemo (which when I read out loud, sounds like a line from a twisted children’s story – as in ‘“C” is for Convalescing during Chemo when you have Cancer.’)
Moving out has been full of mixed emotions for me. While it might not have been my dream home, that place was the backdrop for the most intense year of my life. I spent whole days on that couch in that corner, too exhausted to even lift my head. I lay curled up in the bed in that other room, crying inconsolably from the intense pain and wishing for something - anything - that would make it stop. Those steps there lead down to the main office where I would go and pick up the care packages that came 3 a week - and sometimes more - that would make me cry just as hard - because acts of love and kindness are especially touching when you’re at the bottom of a well and someone throws you a rope. And that little balcony that overlooks a quiet and tree-lined part of Tuckerman Lane? That served as my meditation space where I would go to get centered and to remind myself that living on life’s raw edges also opens you up to incredible amounts of grace.
When I was first diagnosed and considering where to get treatment and all that would flow from that, I needed to decide where I was going to live for those 6+ months. I could return to my New York apartment smack in the middle of all of Manhattan’s wonderful insanity. I could continue on holing up in Charlie’s big group house in D.C., where I had been hunkered down since my mom died, playing with the two crazy dogs and having BBQs with a revolving cast of characters that usually involved impromptu games of beer pong. My sister very sweetly offered up her house, but I knew that space needed to center around nurturing a new baby, which would be harder to do with me curled up on her couch for days on end, crying.
Just in the past two months Charlie read somewhere that Bethesda means “healing spring”. He didn’t know that when he rented the place. He only knew that I needed a quiet place to rest and to get better. The little place on Strathmore Hall Lane was perfect.
Now, 14 months later, it’s time to move on. I’m working again more than full time, planning a big event that happens next week. Let’s just say the move was not well-timed, but despite all the ways having cancer has changed me, it’s still pretty amazing (and sometimes pretty scary) how easy it is to slip right back in where I left off – namely juggling a lot and somehow making it all work. In between late nights at the office and jaunts to Chicago, Dallas and Birmingham, AL to interview America’s boardroom leaders, I’ve been packing boxes and sorting papers and trashing things that no longer serve me (orange bikini from 1995 – I’m talking to you.) Miraculously, we got it all done and somehow managed to get out just under the deadline of midnight on October 31st. Once I had time to sit still and catch my breath, I realized that I had just sped right past a moment that was the bookend to most influential chapter in my story. In my haste to get it all done, I had almost missed it. Almost.
I left for work an hour early this morning and after I got my obligatory Panera hazelnut coffee (it makes me so freakin’ happy that stuff), I stopped by the old place. Although it’s technically November 1st and I technically don’t live there anymore, I figured at 7am no one would be the wiser. I walked in just as the first rays of light were streaming through the windows. I sat, crossed-legged on the floor of the empty living room and silently thanked that little apartment for all it had given me, all the ways it had supported me the way a proper nest should. I silently thanked Charlie and my sister and my amazing dad and stepmom and sisters for all of their love and care and support. And then I thought of each one of my amazing friends and how it’s possible to feel the depths of despair and the depths of the most amazing love all at the same time. Mostly I just reflected on all that’s happened in the past year – what I know about how it’s changed me, and what I’ve yet to discover.
I had my end-of-chemo-PET scan a week ago Wednesday. It’s a routine test given to us cancer patients, which involves drinking radioactive dye and getting in one of those MRI tubes so the techs can take photos of your insides. (You end up with a photo that looks not unlike those new TSA full body scans, only those are free and the one I got cost $12,000. One the up side, there was no slow dude in front of me trying to unpack three laptops with all of the grace and speed of a wounded basset hound.)
Dr. Fishman recommended I get this test back in February when I finished chemo, mostly as a baseline against which to measure all future scans. And…”just to be sure.” I put off getting the scan for a month and then scheduled it and then rescheduled it twice after that.
“What’s the rush?” I thought. I mean, if my scans came back clean half way through chemo (which they did) surely another 6 rounds of that stuff could only have made me extra cancer free or super-cancer free or something like that. Besides, three months out from chemo, I’m busy. I’m working again. And I *really* needed a pedicure. Plus no matter how much they try to disguise the label with pictures of strawberries, that disgusting contrast dye shake tastes like “berries” the way that air freshener sprayed over rotting meat smells like “lilacs”.
And if I’m being totally honest (and let’s face it, that’s what blogs are for) I knew that even though there was NO way I still had cancer in my body, that if for some crazy reason I did….I kinda didn’t want to know.
Let’s just say when you relapse with Hodgkins, the treatment starts
with a month-long stay in the hospital where they put you in a bubble and totally blow away your immune system. Then they give you a transplant of your own stem cells. After that you get 6 months of chemo. Then radiation. (I know all of this because it happened to my friend Mia, who is twice as brave and fierce and amazing than I could ever hope to be.)
I would tell you that the thought of all of that totally freaked me out, except I can’t. I don’t really know what the thought of that feels like, because I never entertained that thought.
What I did
know was that I made it through chemo with my sanity intact – but just barely. I also knew that if I considered the thought of a relapse even for one second, I might go totally, completely and irretrievably batshit crazy. (And not crazy in that fun, “my-life-is-a-Laverne-and-Shirley-episode” kinda way. I mean the other way. The “talking-to-yourself-real-loud-and-punching-invisible-bad-guys-in-public” kinda way.)
So that’s all to say, I tried not to think about it. And I knew I would be okay. So except for the momentary gag reflex when I forced down the “triple berry shake”, this whole PET scan thing was a total non-event.
Or so I thought.
I was getting ready for work when I got a message from Dr. Fishman’s receptionist. It was short, sweet and to the point: “The doctor would like you to call him.”
doesn’t sound good. Doctors are usually too busy to give you good
news in person over the phone. I listened to the message again and then stared at my phone for about a minute. “What’s up?” Charlie asked. “Fishman wants me to call him,” I replied. While I refused to meet his gaze, I could see out of the corner of my eye a very small, barely perceptible flash of sheer panic on his face. Charlie also knows that doctors never call with good news.
I dialed the number and tried to stay as calm as possible. I had to hold for about 3 minutes (roughly about 4 ½ hours in “waiting for the diagnosis” years). Finally I heard Fishman’s very authoritarian sounding voice come on the line. He asked how I was feeling. “Oh great, just great.” I said, lying through my teeth. I actually had
been feeling great about 20 minutes before. Right then I thought I was going to puke. “Well,” he said “I just wanted to tell you that your scans look excellent. I would say you’re in full remission.”
Full. Remission. Just typing those words now gives me goose bumps all over again.
I hung up the phone and immediately burst into tears. Charlie hugged me as I said, though sobs “he…s-s-s-said…I’m…in…remission.” Charlie managed to both smile and look a little freaked out, the way most guys do when they see the waterworks. “Are these good tears?” he asked. I nodded. And they were
good tears. But I realized I didn’t really feel happy. I mostly felt...relieved.
It's like I had girded up for battle, fought the good fight, took a lot of hits along the way, and through it all the only way I kept going was to never entertain the idea that it might NOT be okay -- that I
might not be okay. That sense of optimism was my magic lasso, my invisible jet, my Rocinante, all rolled into one. And it worked. It held me together. Allowed me to kick some serious butt. The flip side is that without realizing it, I spent the better part of the last nine months holding my breath. I guess it took hearing official confirmation from a guy with letters after his name, to finally exhale.
Later that day I found myself at the Sculpture Garden enjoying some of the free jazz and not-so-free sangria they have there (if you’re in or around DC on any given Friday this summer, you should check out both: http://www.nga.gov/programs/jazz
Thanks to Charlie who had beaten me there by at least an hour, I had a prime seat along the fountain, toes in water. About two hours into the show, ominous black clouds rolled in from the east. Lightning crackled through the sky like a thousand fireflies doing their best impression of Rolling Thunder (without the Sarah Palin photo-op.) The rain started immediately fast and furious. Folks all around me grabbed their blankets and pitchers of sangria (and this being DC, their Tory Burch flats) and scrambled for cover. Everyone, that is, except for me. Some little, but very firm, voice in the back of my head said, “stay.” (Actually it said “stay, but take your toes out of the water for god’s sake – it’s lightning!”)
So I did. (both)
I watched the drops falling on the water in the fountain, hitting the surface in a way that made them look like they were doing a frenetic little happy dance, ecstatic at being freed from whichever dark cloud they had come from. It was the kind of show you don’t see every day, either because you’re stuck inside, or not paying attention or too busy running for cover. It was raw and beautiful and made me laugh out loud. I felt like a little kid at the Icecapades.
Staying there, in the midst of that lashing rain also felt like church, like I was being baptized anew, reborn as someone who looked a lot like my old self, except for stronger and wiser in ways I had never imagined before.
Bearing witness to that downpour felt like an offering to the universe, an acknowlegement of all that life has both taken away and given me over the past 18 months. And it was a great reminder that things bigger than us -- things that we cannot control -- will upend our lives in ways small (the sudden soaking rainstorm, the blown tire) and big (cancer, a tornado that wipes out an entire community). These moments are part and parcel of being alive. And if we can weather the initial influx of pain, sit still and just bear witness, that sudden downpour can be as beautiful as the most breathtaking sunset.
Staying put was also an offering to myself, to that scared inner part of me that had held her breath for so long. Yes the lighting crackles and the thunder roars and rain comes down in sheets, but eventually it stops. And it's then you realize you’re still alive -- soaking wet, but still laughing.
Today is my birthday. My for real birthday. As of 9:48pm, I'll officially be 36 (or as my dad and Charlie have pointed out, starting my 37th rotation around the sun, which while it may be true, is not really what I'm choosing to focus on, especially since I still feel more like 26 in the first place.)
Every year since I can remember my mom would call me on April 12th sometime before midnight and we would have "the birthday talk". This basically consists of a series of questions including "what was the best thing about being (insert age you're leaving behind here)?" "What was the worst thing?" and "what are you most excited about for (insert age you're turning here)?" In all of my 34 birthdays for which she was alive, she never missed a talk. I remember once, before cell phones (yes, my little sisters, I'm THAT old) I broke away from a study group at Denny's where my roommates and I were cramming for finals and called her from the payphones by the bathrooms at 11:48pm, just to make sure I didn't miss it.
This year my sister did the honors, and while I really miss having that conversation with my mom, I have to say, Annie handled her duties with a grace, enthusiasm and irreverance worthy of Linda Ross.
Needless to say the best thing about being 35 was Aubrey's birth (which I almost didn't mention since I thought for a second that it happened when I was 34. The whole "lost year of 2010" has really f''ed with my sense of time.) The worst was, hands down, chemo. Not so much cancer, but chemo. I want to be careful about dissing on cancer too hard. Having cancer taught me so many valuable lessons about living, about who I am, what I'm capable of, what matters and about how I need to readjust my life to create happiness and balance for the next 60+ years. I am grateful for these lessons and I don't want the universe thinking otherwise. Not only do I not want seem like an ungrateful byatch who can't accept a gift (even when it comes wrapped in newsprint from the Classified section), but I don't want it to think I missed the lesson and therefore need to repeat it. I got it. Loud and clear. So cancer was actually one of the best things about being 35.
Chemo, on the other hand, can suck it.
As for what I'm most looking forward about 36, that's a little harder to pinpoint. Even two months out from chemo, I'm still trying to get my feet under me. To feel at home in my own body. To embrace what I'm capable of when I'm not forced to rest 20 hours a day. I'm working on my writing and am looking forward to finishing the book I'm creating. And I hope to tell more stories through my film work, too. Mostly though, I look forward to slaying more dragons. See the dragon of the "dragon slaying princess" fame is not really cancer. That's only last year's incarnation. I've been calling myself a DSP for many years, well before the first little, marble-sized lump reared it's ugly head. Because at its root, the dragon is fear. And that takes all forms.
The gift cancer has given me is to embrace my own strength and creativity and awesomeness. And to take more naps. But mostly the creativity and awesomenss part. And that requires slaying dragons. Like the big green one that says "you don't know if you want kids? you'd better hurry up. For all we know you're ovaries are shriveling AS WE SPEAK"; the purple and black one that whispers "you need to imitate what other peoples' "success" looks like. Oh look you fell short again. Well, you obviously suck, so you might as well just pack it in now"; or those little small but persistant ankle-biter scaly ones that say "if you say that, people won't love you/hire you/want to play with you. Just sayin'. But really, you'll be old and alone. All alone. And broke."
It's amazing how they know exactly which buttons to push. And they *really* seem to enjoy it. It's enough to drive a girl to drink. Or take up arms. But like the Rumi quote says those things that scare us most usually just want our love. So basically I feel about my personal dragons the way that some people feel about the homeless or people whose religions they don't totally understand. Luckily cancer has taught me a lot about love -- both cultivating it in myself with gentle surrender and mindfulness and receiving it from other through homemade soup and t-shirts and visits and the cleaning out of the bathtub.
About those dragons...I think I'll name the green one Pete, the purple one Homer and those little snippy ones the Santorum twins.
So here's to 36. And to taming those dragons with lullabies from my higher self and writing exercises that summon the divine and lots more time with my toes in the sand. But if anything like chemo comes around again, I'm not afraid to pull out the nunchunks. Sometimes a girl's still gotta show she's not to be trifled with.
I’m here in La Jolla California, getting in a nice mix of work and R and R. I came to San Francisco for my friend Marianna’s wedding and then took a drive down the coast so I could put my toes in the sand on the beach here. Except for the occasional jaunt up to New York, chemo had pretty much kept me chained to DC, so it’s nice to be able to get out to SF and LA and to hug in person all of those people who have been cheering me on from afar these past six months.
I keep calling this California trip my “victory lap”, an extension of the post-chemo party. But the truth is, except for the when I look in the mirror and am still (always) momentarily shocked that the woman starting back at me is kinda bald, cancer feels like a distant memory.
Except for when it’s not. Because while I mostly feel pretty great and happy to have made it through and out the other side in one piece, I also feel a little out of sorts kind of like I’m in limbo.
The last time I was in La Jolla, I was filming scenes for an Animal Planet series. I can remember driving these streets, along the beach, through the hills and walking Torrey Pines State Park scouting for the perfect locations. That was seven and a half years ago. It seems like another lifetime.
My friend Michi described her own experience with cervical cancer as “surviving a head on collision with the universe.” And while I feel lucky that I made it through chemo in better shape than most, I understand what she means. My eyes are sunken and lined with dark circles, I have scars on my chest and arms (from the port and the rashes, respectively), my joints ache and I’m still tired most of the time. I feel like chemo has aged me at least 10 years. Kind of like what happens to dudes after they become president, except I don’t have to worry about who has the nuclear football.
In the coming weeks as my system starts to detox and heal, I know my body will move back toward normal. I also know that emotionally and spiritually, I will never be the same.
I never wanted the cancer to define me. Even before I started treatment, words like “survivor” made me cringe. I thought somehow I was different, special. I wasn’t going wallow in the “cancer experience” or get bogged down by it. Cancer was something to move through, to get past on my way back to my “real life”.
But my life has sort of taken on this dividing line: before 2010 and after. And as with a lot of things post-2010, I get it now. My perspective has totally shifted. Now, like Ringo, I"m just happy to be here. Now I see cancer not as something to “get over” or move past, but a place to grow out from.
A yoga teacher once told me that the word limbo gets a bad wrap. That if you can embrace the uncertainty, limbo is a really powerful place to be. It's where all the juicy stuff happens that prepares you for the next phase of growth.
I know this whole experience has changed me, I’m just not totally sure how. That will reveal itself in its own good time. For now I will settle for some sand between my toes and the knowledge that while I may not be special, I’m something better. I’m a survivor.
Today marks chemo treatment 12 of 12. That’s 100% for those of you scoring at home (I’ve been waiting 6 months to say that!!!) It’s a momentous day that almost got eclipsed this week by work and a really awesome case of the worse hives ever. (It’s sort of like chemo’s parting gift to me -- Thanks for the memories chemo. Don't worry, I won’t forget you. Ever.)
Yesterday while I was at the dermatologist to try and get rid of said hives, Dr. P congratulated me on getting to my last treatment. “It’s a big day!” he said. And for once I said “thank you. It is
a big day” and meant it. Before this, chemo was just something I had to do, something I endured because I had to (kind of like a whole bunch of root canals. Without novacaine.) But now that I’m actually here and it’s almost done, I do feel like I made it. Like I accomplished something big. Or at least survived with my sense of humor marginally intact, which feels like a big accomplishment in and of itself.
My stepmom texted me last night to ask me what my “chemo eve” resolutions are. As in “you’re done with this chapter. You get a fresh start. What do you want that to look like?”
It’s a little hard to say for sure, because like so many “opportunities for growth” you don’t really appreciate them until they’re done and over with and you have a little perspective. When they’re happening they usually kinda suck. And even though I’m at the end, I think the lesson in all of this won’t be evident for months or years to come. That said, I thought long and hard, and so from where I stand now, here are my “chemo eve” resolutions:
- Get more sleep and eat more vegetables
Because I learned that I’m not unbreakable, that my body has limits and if I want my body to be nice to me, I need to be nice to it. This is also a good rule for every other part of life too.
2. Train for a marathon
Because I’ve also learned that my body is stronger and more resilient in the kind of ways you don’t understand until you’ve tested the limits. It’s capable of beating cancer and surviving ritual poisoning for 6 months and bouncing back. Plus I’ve always wanted to run a marathon and have continually put it off, which brings me to…
3. Stop putting off my life goals for “maybe someday”
Warning: this is where I invoke the cheesy cliché about life being fragile and precious and how you only get one go ‘round in this body. That’s because well, life is fragile and precious and you only get one go ‘round in this body, which you appreciate a lot more when you face the prospect of losing it. So I’m going to run a marathon and write my book even though I don’t totally know the story goes yet and direct my own film even if I don’t have the funding in place and visit all the countries that start with an “I”, also Greece. Oh wait, Iran and Iraq both start with "I"s don't they? Okay maybe I'll stop at India on that one.
4. Reach out, pay it forward
More than anything this whole experience has really shown me how important it is to reach out, the power of connection. You can’t imagine how the simple act of sending an email or a text or a pair of fuzzy socks in the mail can make someone’s whole day, but I’m here to tell you they can. Now that I’m finishing up with my rough patch, I’m going to harness all of the energy and support and fuzzy socks love that you’ve showered on me the past six months and do my best to do you proud by reaching out to other people who need it.
5. Practice gratitude daily
I’m usually a pretty optimistic person, but these last six months have really put that to test, and I can say without hesitation that gratitude has carried me through. When so much feels so heavy, it’s easy to get crushed unless you take time to remember why you should get out of bed. That’s why I have taken to spending a few minutes each morning to thank the universe for at least three things I feel lucky to have in my life. Some days all I can muster are things like peppermint tea and bubble baths, but everyday my list includes all of my amazing family and friends. You’re enough to make me feel like the luckiest girl in the world – even on chemo days.6.
Follow my heart with intention
I’ve tried to follow this mantra my whole life, but I have to admit that in the past, it’s been way too easy to get caught up in the rat race, to listen to the nagging “shoulds” that programmed in, without really
thinking about why I’m doing what I’m doing. Now that I’ve spent six months just putting one foot in front of the other out of necessity, I cringe at the prospect of doing it by default. Whatever I choose to do, I’m going to do 100% with my whole heart. Anything else is just a waste of time.7. Stop sweating the small stuffThere's nothing like being bald to put all those times I stressed over a bad hair day, in perspective. Ditto for worrying about the size of my thighs and for taking things personally. Imagine how much more time and energy I would have for following my heart and paying it forward and marathon training and book writing and vegetable eating (not to mention playing in bouncy castles) if I just let go a little more and said f* it a little more often.
I'm sure I could think of a few more but the nurse has ported me up, my dad and Annie and Jeff are on their way down and Charlie is decorating the treatment room with streamers and balloons. The receptionist just walked by and stopped to see what's going on (I’m going to go out on a limb and say it’s because I’m wearing a tiara…we take this last treatment celebration business very seriously). She asked if today is my birthday. I guess in a way, it is.