So I am sitting on my couch waiting for my friend Kricket to arrive. She’s in from Chicago for New Year’s and needed a couch to crash on, so we volunteered ours. I think she’s awesome, but to say she’s a great friend would be a stretch – in fact I haven’t seen her since the night we met, two years ago in DC. It was Christmas Eve, she was tending bar, and Madam’s Organ was sort of a last resort. My friend Deilia and I realized that we were going to be flying solo Christmas Eve, since our mothers had retired to bed and our siblings were off enjoying the holiday with their respective partners in disparate corners of the country. We thought we would join the rest of the rowdy, fun-loving, orphan souls out for a Christmas Eve drink. We soon discovered those lost souls amounted to exactly 4 people – myself, Deilia, Kricket the bartender, and some guy nursing a gin and tonic and recommending the nachos.
I remember that night clearly. I was feeling strong and alive and full of possibility. I had decided to pull up stakes in San Francisco and relocate to New York and was making plans for an April move. I didn’t know it yet, but I was also just about to find out that the doc I produced, MINE, had been accepted to the South by Southwest Film Festival in Austin. I also didn’t know that I had cancer and I definitely didn’t feel sick. I *felt* like the world was my oyster.
That guy from the bar turned out to be Charlie and here I am sitting on his couch in the apartment we share, waiting for Kricket to show up. Do you ever have those moments when you think “if someone had told me five years ago that I’d be (fill in the blank)….?” Well if you had told me when I stumbled into that bar, that two years later I’d be living with that guy in DC while he nursed me through chemo…well, I’m not really sure what. But I am pretty sure my reaction would have made for some great TV.
Flash forward a year after that, to exactly a year ago tonight. I am loving my new life in New York, really starting to put down roots and establish a community. MINE is fresh off of an Audience Award win at South by Southwest and a distribution deal, and we’re gearing up for a big theatrical premiere in New York the third Friday in January followed by a homecoming screening the following weekend in New Orleans. I think I know what’s important to me, I think I have it, and I can’t remember being happier. I am home for the holidays and visiting with my mom, excitedly telling her all about it. I am totally oblivious to the fact that two weeks later she will be gone, and that on the third Friday in January, instead of going to my big New York premiere, I will be standing with my sister giving her eulogy. Mostly I am totally oblivious to the fact that there is still so much I have left to tell her, ask her, dissect with her and that I’m running out of time.
Which brings me to now, on the day tailor made for reflecting back on the last year and trying to envision the one ahead. A lot has happened in the two years since I met Kricket, and her impending visit has me ruminating about life and destiny and serendipity and things like that. I’m living with the guy from that night, someone I didn’t even know existed two years before, when I didn’t know I was sick, didn’t know I would lose my mom, didn’t know I would need to be helped through that broken heart, the diseased blood. And I can’t help but think how amazing the universe is -- because while you can’t see what’s about to knock you down, you also can’t see what’s being put in place to help pick you back up and dust you off. And you can’t know when you first meet someone, or visit a new place, or eat a seemingly innocuous plate of nachos, what’s happening at that exact moment that's conspiring to bring you growth and expansion.
My life looks completely different than it did on December 31, 2009. In twelve short months, I’ve buried my mother, helped bring my niece into the world, and looked my own mortality in the face. I feel tired, nauseous and a little like I just survived a serious campaign of slash and burn. I also feel full of possibility and hope, and like I am starting to understand what really matters. My mom’s death has brought me even closer to my family and friends and taught me to hold the people I love tight and to never take a conversation, a meal, a moment with them for granted. Fighting cancer has deepened my sense of empathy, strengthened my voice and brought who I am -- and what I want -- into sharp relief. I feel like the world is my oyster.
So I can’t help but wonder, what’s happening right now, unbeknownst to me, that is opening the way for all kinds of beauty and wonder? What is this year’s version of that bar stool on Christmas Eve? What are the things that I’ll look at back at on December 31, 2011 and think, “If I’d known then…”
I’ve been toying with this title for this blog post all week. I like it because if my doctors are to be believed, I want to climb out onto my fire escape and shout that over and over again from the rooftops. I haven’t yet because a) I don’t want to jinx myself and b) I like my apartment and I don’t feel like getting evicted. Being cancer free and homeless isn’t quite as exciting as just being cancer free.
Basically, I went in for my half way PET scan a week ago Monday and the results show no trace of cancer in my body. That’s right: Zero. Zip. Nada. I realize this is big news and I’ve been chastised for not making a bigger deal of it, which I think warrants an explanation:
First, there were just words on a lab report that said things like “lymph nodes considerably smaller” and “no evidence of hypermetalbolic activity” – which SOUNDS good, but I wasn’t quite sure what it all meant. If I still have lumps, I still have cancer, right?
After talking to Dr. Fishman, I learned that lumps might never fully go away, even when the cancer does, and “no evidence of hypermetalbolic activity” is just fancy medical speak for “when we feed you radioactive dye and look at your insides, all those areas that used to light up orange on the computer, showing us where the cancer is, don’t light up anymore.” My doctor here even used the “R” word (considering I still have five chemo treatments to go, I think it’s a little premature and am superstitious about actually saying it out loud, but let’s just say it rhymes with “schremission”)
A little back story for those of you that didn’t already know: when I was first diagnosed, I decided to leave my apartment in New York and move down to DC to get treatment so I could be closer to Annie and Charlie. Even with the decision to get treated in DC, it’s still good to have a second opinion and Memorial Sloane Kettering in New York is one of the best when it comes to all things cancer. My friend Mia hooked up me up with her oncologist, Dr. Matt Matasar, so I made the trek back up to New York just before I started chemo in September, to get his take on my situation. He helped me understand that twelve rounds of chemo with no radiation seemed best for me, but to come back and see him once I was half way done to re-evaluate. He also told me to keep taking Japanese mushroom supplements because they are cancer butt-kickers. He’s a smart guy. Plus he’s also a hugger, which I appreciate.
I didn’t want to make any announcements until after I had that follow-up appointment with Dr. M because I felt like hearing it from him would make it more real. And when everything else in your world feels like echoes of life down the rabbit hole, reality is an important, and sometimes elusive, touchstone. I saw him yesterday and basically he concurred. In fact he said I get an “A+” which hasn’t happened since sophomore year of college, so I’ll take it.
I’m grateful, really I am. It’s just that the irony of it all is hard to digest sometimes: before I got diagnosed -- even though I actually had cancer -- I felt totally fine. Once I started chemo, I felt sick and nauseous and achy and frail and well, like a cancer patient. And even with this encouraging diagnosis, I still have to finish the rest of my chemo (think how they make you finish the entire course of antibiotics even after your throat stops hurting) and while I realize that in the big scheme of life, two and a half months might not seem like a lot of time, it feels a lot longer when everything tastes like Drain-o.
Basically, as my sister puts it, I’m a cancer-free cancer patient (who still feel s like a for-real cancer patient.) And since I also know enough people who have been declared cancer-free, just to have that title wrenched from them a few months later with another test, I’m also a cautious cancer-free cancer patient.
On the other hand, I’m also an optimistic cancer-free cancer patient who believes strongly that thoughts become things and “science, it works bitches,” so here’s what I’m going to do: I’m going to have a very small nip of the real bubbly tonight to celebrate, because I feel it’s necessary and also that God would want it that way. But I’m saving the real celebration for when I’m done with chemo and get that all-important last scan that confirms that the storm is over, the house has hit its mark and I can rock the ruby slippers with confidence. Then we will bust out good stuff, open the drink umbrellas and party like rock stars. Until then, I’m going to keep my “ding dongs” to a faint, but triumphant, whisper.
I finally took the plunge and shaved my head. And it feels great, which is a little weird when I remember that no so long ago, I really didn’t want to be bald. Back when I was first half-diagnosed, before the full magnitude of what having cancer really meant hit me, it was actually one of the things that scared me most. I realize that sounds silly now, especially on the heels of what was a rough several days last week with fatigue and nausea, but I guess that’s how it works. Your priorities can be kinda skewed before life kicks you in the ass and shows you what really matters.
Adriamycin causes hair loss in 99% of patients. I’m a gambling woman, but 1 in 100 are some tough odds, even for me. So I began to embrace the inevitable. I took the bull by the horns and cut the curls. I bought a ton of cute hats. I invested some serious (wo)man hours into learning how to tie a headscarf. And I waited for the morning when I would wake up, look in the mirror and just know. When I would look less pixie and more, well, sick.
Then a funny thing happened.
My hair held on.
I mean don’t get me wrong. It definitely fell out. A lot. But most people are more or less bald by the third treatment. Here I was on the verge of treatment number six and it actually looked more or less…normal.. Every time my sister saw me, she would run her fingers through it and say “it still looks good!” Even my favorite chemo nurse Dionne kept commenting on it. “You still got your hair. I think you dodged that bullet.”
By all accounts I should have felt grateful.
I was feeling…a little disappointed.
I know it sounds crazy, but hear me out. When you’re facing something so outside the realm of what you had planned for yourself just six months earlier (like mainlining poison and going bald, instead of gallivanting around the world working on the next Oscar-winning documentary, for example) you really need to psyche yourself up if you want to come through it with your sanity intact. In getting myself emotionally prepared, the shaved head became like a badge of honor. The purple heart of the war on cancer. And the more I suffered the battle scars, the more I wanted my freakin’ medal.
Then these amazing dudes in my life both said they wanted to shave their heads in solidarity. They were ready for the party, I just had to set the date. It was so touching and beautiful. And I love a good party. It all seemed perfect. But I kept hesitating. It seemed silly to shave my head just because. I still had my hair…maybe that was a sign I wasn’t meant to shave it. And let’s face it: (I’ve said it before and I’ll say it again) no girl really wants to be bald.
My angels-in-waiting got tired of waiting and decided they were doing it – with or without me. I went mostly for moral support. And to take pictures. I was definitely not ready. Not that night. Maybe next week. Yeah, next week sounds better.
But as I watched their hair fall away, I realized that with the number two guard on the clippers, the cut didn't really look bald (at least not in the Mr. Clean kinda way I had envisioned), and that the end result wouldn’t be that much shorter than my pixie cut. In fact, it might actually even it out (I had taken to doing “clean up” trims myself – not pretty.) And I started to realize that whatever way the pendulum swung, I was making the whole shaved head thing bigger than it needed to be. That maybe I should stop thinking so much and just. let. go.
So I just did it.
Taking that first, hesitant peek in the mirror, I was surprised to find that even bald, I still look like me - with the same exact smile and the same mischievous twinkle around the eyes (or as my college roommate calls it the "I am going to shove this whole donut in my mouth and show you" gleam - but that's another story.)
Most importantly I realized that just like my curls don't define me, neither does this new found role role as cancer patient. Either way, I'm still just Erin.