énouement and gratitude and song

Palm BeachIt is a windy morning in Palm Beach. The clouds are rolling through quickly, casting dark, then glimpses of light, as they go. I pull my sweater tight when things go dark and turn my face up instinctively when the sun reappears.

“I’ve looked at clouds from both sides now.”

I am sitting at a table for one in the breakfast restaurant at the Four Seasons, drinking my green tea slowly to justify my poolside table, but I know nobody will ask me to leave or even get fidgety about my presence. That doesn’t happen at the Four Seasons and, whether I like it or not, it doesn’t happen when you sport the shiny bald head that betrays your illness even when you otherwise appear healthy. People treat you differently when they think you are staring down death. Besides, I’m celebrating. Chemo is over. Surgery is next week.

“The wheels on the bus go round and round.”

Anyone can get hit by a bus any day. I used to say this all the time. I hear others say it all the time. It is a stand-in for understanding your own mortality, but it is mostly bullshit. I certainly did not understand—really, truly feel—that I could die any day whenever I said it. If anything, saying it reinforced just how ridiculous it was to think that I could die. I was young and healthy. My bus was traveling down a side road, completely out of view. Until it turned the corner this year. Until it was charging at me, at full speed for awhile, and then with less resolve over the last five months.

I am not sure I will ever forget how it felt when I first realized the severity of my cancer diagnosis. It felt like I was kicked off the bus that everyone else in the human race is traveling in. I was left standing on the side of a road in the middle of nowhere with no luggage, dazedly waving as the bus charged forward, full of occupants singing some song with words I once knew by heart but could no longer remember.

It feels different now. I know that nobody is actually on the bus. We are all just walking down the road, trying to gain as much distance as our legs will travel before our bus turns the corner and heads straight for us. As one book put it, as isolating as illness and death can feel, death is the only thing we all have in common. We will all be hit by our bus and nobody will decide when or how. We are all connected by this and, at the same time, we are all alone on the side of the road. But it is one hell of a road to walk together, alone.

“Word is bond, I go on and on.”

And I am grateful for every single day I get to keep walking down the road. I am grateful my bus has not yet hit me. I am grateful for light and breath and new mornings. I am grateful for the most basic things. Aside from a very unlucky diagnosis, I have had an unthinkably lucky year. My cancer is treatable and the treatment is working. I am surrounded by loving and generous friends and family—some I always knew to be there and newcomers who have surprised me. I live in a beautiful place I never take for granted. I get to celebrate by the ocean. I am privileged in so many ways.

“But I was so much older then, I’m younger than that now.”

I learned a non-word today. Énouement, the bittersweetness of having arrived in the future, seeing how things turn out, but not being able to tell your past self. It made me think of my past self—not just the one standing on the side of the road five months ago who thought she was watching the bus pull away, but also the one who, long before that, always believed she could control every outcome in her life. It made me think of my future self—the one who will again face loss and pain and grief. And death. I think of these selves, who are walking down the road with me and how I want to tell them something but, even after all of this, I somehow feel like I know less about much, much more. The only thing I want them to know is that everything is going to be okay. Even when it is not.

I am not this hair

Recent photo that captures my decades-long hairstyle
Recent photo that perfectly captures my boring hairstyle

I have had the same hairstyle since middle school. This is not an exaggeration. Mid-length, side part, minimal fuss. I don’t use fancy products beyond shampoo and conditioner. I blow it dry every day (unless I’m on vacation—particularly in a humid destination where I like the curls I get). Sometimes I use a rounded brush on the ends, but usually I don’t have the patience. I know, I know—it makes me incredibly boring, but this has been my hair every single day since the mid-90s.

That’s about to change. And while it is, perhaps, one of the least significant things that is going to change in my world over the next six months, it is the most immediately public-facing thing that will change. And it is the thing that makes it impossible to hide what I’m facing—even if I wanted to.

I got the call on Friday, June 26, 2015. I had been at the office about an hour. I knew it was coming and I wasn’t expecting much. I found the lump on June 15, one week into a two-week boot camp program that mandated two-a-day workouts, six days a week. I’m not one to go to the doctor and I joked that it was probably just a new muscle from my workouts, but I made an appointment that day. The doctor took a look, said it was likely a [benign] fibroadenoma, but scheduled me for a mammogram to make sure. That led to a biopsy. Which led to the call.

It is not a fibroadenoma. It is a small cell, neuroendocrine carcinoma (NEC). And they suck. I’m pretty sure that’s the actual medical description. My best friend, who is a doctor but not an oncologist, texted me ten minutes after I told her and told me to tell my mom NOT to google anything. I didn’t need to google it to know it was bad. The day after the call, I received my pathology report, which was mostly medical gibberish aside from one very clear line: “Unfortunately, the prognosis [for this type of carcinoma] is relatively poor.” I’d like to say I’m the type of person who had a calm reaction to this, but I didn’t. I completely lost it.

I’m 36 and, like many people who bumped and bruised their ways into their mid-30s, I’ve hit that point when everything just feels good. Life is never perfect, but my life is really, really good. I live in Boulder with my boyfriend, my dog, and two cats who tolerate me. I hike and I bike and I run and I garden (admittedly not well, but I’m learning) and I read and I take early happy hours with friends and I laugh a lot. I am surrounded by generous and loving family, friends, and colleagues. My career is everything I have wanted and worked for, and beyond anything I ever hoped it might be when I was first starting out.

And I’m healthy. My oncologist even said so in our first meeting after asking me a series of health-related questions. “So, basically, you’re a very healthy 36-year-old,” she said. “Well, yeah,” I said. “Aside from that whole cancer thing.”

I met my oncologist for the first time on Tuesday, four days after the call. By then I had already had a CT scan and she had the results. I’ve come to learn that NECs of any type are rare and they usually present first in the GI tract or pulmonary system. The small cell NEC we found was in my breast, so there was a real fear that it was a secondary site (or worse). But the scan found only the one incidence of cancer. When she told me, I started crying. She held her hand out as if to pat my hand to comfort me and said, “This is good news.” I knew that. It just wasn’t what I was expecting. I was expecting an expiration date.

A small cell NEC presenting in the breast is incredibly rare and while I had been hoping for that outcome, based on the limited information I had going into my appointment, I knew it was a long shot. My doctor estimated there are fewer than 40 known cases in the country. Ever. So much for support groups (by the way: if you happened to find this page because you have a small cell NEC that presented in your breast, feel free to reach out to me). Or research studies. But, if I’m going to have a small cell, neuroendocrine carcinoma—which I guess I am—it’s actually good news. It’s aggressive, but it’s treatable. You know your world has been turned upside down when an oncologist tells you you’re going to need chemo, surgery, and radiation and you go out and celebrate. I actually did that. My chemo started a week and a half ago, just a week and a half after the first call. And it’s a long road, but I’ve always chosen long roads.

Still, it takes my life and shakes it up beyond anything I could have recognized just one month ago. And I’ve had to deal with the fact that people will know—not just in my personal life but in my professional life, which is important to me. In October, I’ll present on the national project I’ve been working on for over a year to a room of legal educators, legal employers, and bar leaders from across the country. I will be 13 weeks into my chemotherapy. I will be more worn out than I usually am. I will be older—not in years, but in experience. I will be changed in that way you change when your life zags far more than you ever thought it would. And if that doesn’t give me away, it will be my hair. It will be gone.

My life will continue. I celebrate a birthday this weekend. I’m planting poppies this fall that will bloom next summer. I even rode part of the Courage Classic just this weekend, a bike ride through the mountains that I have done every year for five years to raise money for the Center for Cancer and Blood Disorders at Children’s Hospital Colorado.

And my work will continue. Over the next year, the initiative I lead is having a big year. We will release the results of a national survey of lawyers on a topic that impacts every lawyer, law school, legal employer, and client. I’ll be there every step of the way. And beyond.

I know that this cancer will change my life. It is one of the first things I knew as soon as I learned more about the severity of my diagnosis. It is an unmovable truth. But I can embrace that without letting the cancer define me and wash away who I already am—and who I will be. As I said to my colleague who wanted to know if she could let one of our organizational partners know what I’m dealing with, “Of course—as long as you make it completely clear that I am still in the game.”

I am not this hair. And I am sure as hell not this cancer.

I am not this hair. I am not this skin. I am the soul that lives within.
-Rumi (and, slightly modified, India.Arie featuring Akon)