I’ve never written about hair. Or at least, not about losing mine. But last week, my friend Ariana and I watched the latest episode of Chasing Life, which, though it has a cheesy name, is the young adult cancer show. And in it, our cancer-stricken lead finds a lock of hair on her pillow. It was like a punch in the gut.

Not because I ever found a lock of hair on my pillow- I took the razor to my scalp long before that could happen. But because it’s an iconic moment, one that is crafted in cancer media representation after cancer media IMG_4492representation, a moment that is recognizable and understandable as cancer. Hair on a pillow.

A year ago today, on Christmas eve of 2013, I handed Sam the electric razor I’d purchased even though so many of my friends were itching to shave my head and give me that baby-dyke look. We sat on the floor of the bathroom and he adjusted the razor to a quarter of an inch and took to my head. I’d already had my long, wavy hair chopped into a short, edgy, bangs over the eyes style. And with my hair buzzed off, three things became clear:

  1. Grrrls with buz-cuts are total bad-asses. I felt like I could sucker-punch the world.
  2. I look like my brother. I had to shake my head and make sure it was me, not him, in the mirror.
  3. I have really intense cowlicks on the back of my head and around my hairline.

That wasn’t such a big deal. But you know what was? What was a big deal was a week later, New Years Day. Just after Christmas I had my second chemo. Three days after the second chemo, Sam and Ariana and I cuddled at home for New Years, and I made them whiskey sours and I mixed a little lemon and a drop of whiskey in with my ginger-ale, even though I couldn’t really stomach it. Four days after the second chemo, I went to Bikram yoga on New Years Day. In the locker room, the teacher, the one who’s classes I attended exclusively while I had cancer, said something about a new year and good health. We talked for a moment about health, about the doctors encouraging me to continue with yoga, about how I wasn’t sure how the class would go.

I went into the studio and laid down on my mat. Practicing in front of me was J, who has since become a dear friend. That day, the smart teacher, the one who’s classes I attended exclusively while I had cancer, told J I had cancer. As the class  progressed, I couldn’t keep up. I got a coconut water. I knelt down. I cradled my head in my hands.  I did it because it was familiar, I did it because it felt comforting, even though I hurt. I stood, I did standing head to knee, I did triangle, I breathed deeply. And I noticed tiny, quarter of an inch buzz-cut hairs, on my shoulders. On my yoga mat and towel. On my hands. I couldn’t rub them off of me because I was so sweaty, and they were everywhere. I wondered if everyone could see. I worried there would be a pile of hairs on my towel where I rested my head, but there wasn’t. After class, I rinsed off in the shower but didn’t wet my scalp. I didn’t want to start going bald at yoga. I didn’t touch my head. I carefully pulled on my shirt, holding open the neck so as not to disturb a single hair on my head. I would be mortified if anyone saw.

That day, J approached me. She told me she was post-cancer. Her hair was growing back. We sat on the bench after class, and talked cancer. I reached up under the hat I’d quickly pulled on my head as soon as I was out of the shower, before I even put on my undies, and I showed her what came away with my fingers- thick little bunched of sweaty hair. Gross. But she was kind. We would become fast friends, dear friends, but we didn’t know it yet. Or maybe we did.

And when I got home, I sat on the edge of the bathtub. Sam played the marimba. And I rubbed my head. Hair fell onto the ceramic tub. I rubbed harder. More hair. I rubbed harder, more, harder, more, harder. The hair piled up and up and up. My head felt smooth. Sam kept playing. I looked in the mirror, and was absolutely horrified. Like totally mortified. Sam stopped playing. There were hairs sticking up, hairs that were holding on, hairs in random places. I looked terrible. Sam took the razor, the one I normally use for my legs, and he shaved the hundred or so remaining hairs from my head, the ones that were randomly sticking out from all over. And then I was bald and crying, and a teary alien was staring out from the mirror and it was weird. But my head was cold and so that didn’t last long. I covered it with a hat and cuddled up in Sam’s arms. It was New Years Day, and I was bald, and it was embarrassing. What a way to start the New Year.

It was not a story I could recount to anyone but my cancer-buddies. They had similar horror stories. One had gone to the hair dresser, had her head shaved bald while she sat facing away from the mirror, and put a wig on before she turned around to look in the mirror. She’d never seen herself without hair. Another had cut it short and then gone around for weeks, letting it IMG_4515fall out slowly, finding hairs in the outline of her head on the back of the sofa as she rested her head while watching TV. Another wore a hat and let everything fall out but the wisps on the edge of the hat, hoping to fool everyone, with hairs sticking out of her hat- which, shockingly, worked really well. Hair is a major issue. It’s one of the iconic, shittiest, most recognize cancer signs that one must simultaneously work so hard to cover up with wigs, a cancer sign that produces so much shame, a cancer sign that is so fraught and so knit together with gender, with sexuality, with who we want to be in the world, with how we want to be recognized in the world.

And so it went. My hair was gone. Atop my bookshelf, still sit the locks of hair that hung down my back when I was first
diagnosed, long and curly pony tails that I had every intention of donating. I still have every intention of donating them, but I just don’t know where or how, yet, and so they sit, in baggies, up on my bookshelf, waiting. Waiting, remind me of the hair that once was.

These days, my hair follicles appear to be having an orgy on my head. Doctors always comment on how much faster my hairis growing compared to the rest of my chemo-cohort. It’s wild. It stands straight up in the morning. It’s curly and full of body, and at my last few hair appointments my stylist has thinned my hair because there is so much of it, and it is so curly and thick. So hair grows back. It’s still one of the worst parts of cancer, but apparently in a year one can go from eleven inch locks to a buzz cut to bald to two-inch long hair that is bordering on mullet-status. Because, it is.

Everyone wants to know, will I let it grow out? People ask nearly every day, what my hair plans are. I have no idea. I don’t care if its long or short, but I certainly didn’t choose to have it short before, and at the moment I’m relishing just having hair. People love to touch it, comment on it, tell me how great it looks. Mostly, I think they notice that I was bald and now I’m not, or it finally hit them that all those hairdos were just a collection of awesome wigs. What’s important to me now is that I get to decide what to do with my hair. I have some power over what it looks like, I can decide toIMG_7782 dye it or cut it or let it grow to my butt. But the point is, I can decide. One of the hardest parts of cancer is that it pries all kinds of independence, power, agency, and ownership over yourself and your body out from your fingers no matter how hard you try to hold on. It’s a giant relief to have the power to decide what to do with my hair again, since I certainly didn’t have power over losing it. Besides, when I was bald I had no idea what to do in the shower. I would get in there and there would be nothing to do because well, no hair to deal with, and I’d just kind of stand there for a minute and wonder what all the other bald people do in their long showers. It really made getting ready fast, but I love having almost enough hair that I almost require a second towel to wrap around my head after the shower. It’s still moderately ridiculous to wrap my 1.5-inch long hair in a towel, but it’s kind of awesome, too, to have enough hair to wrap in a towel. I could do without the leg and armpit hair, though.

Here’s to a Christmas with no buzz-cuts, and a year during which hair doesn’t fall out of my head scalp and stick to my skin during yoga. What a Christmas gift- hair that’s here to stay, mullet or not. Merry Christmas eve.

when normally awesome people turn into assholes about young adult cancer. `

It was a question of curiosity. It was a kind question, one we ask each other often. “What are you writing now?” And I responded, to these normally awesome people, about my health literacies project that focuses on the media engagement and knowledge production practices of adolescent and young adult cancer patients. So, kids, they asked? Still kind. I explained the term AYA, and how it refers to folks between 15 and 40.

That’s where it all went downhill. They guffawed. They laughed at considering a 40-year a young adult. They were in on a big, giant, smiley joke together, and I was on the outside, straight-faced, the non-laughing corner of the triangle, now invisible. “It’s a really big deal,” I said, “to be a cancer patient when all of the other cancer patients- the ones sitting across from you at chemo, the ones enrolled in the studies and trials, the ones in the waiting room, the ones pictured on TV, the ones for whom the chemo protocols and screening technologies were developed, the ones who’s stories are told in movies, the ones who’s links these very same normally awesome people shared on Facebook… when all of these people you can see with cancer are 30 or 40 years older than you, it is a very big deal.

Now let me tell you about AYAs. We have more aggressive cancers. We die more frequently. There is almost no treatment specifically for us. Our doctors use treatments prepared for older bodies- bodies that are biologically different than ours- and they try to patch together treatment plans that will save our lives. When we ask questions, we mostly hear, “Well, there’s no research on that.” or “We don’t know how young bodies respond.” We face unique concerns surrounding fertility, bone density, and 30, 40, and 50 year side effects of treatment. When they use the existing surveillance to test us for cancer, it regularly fails because it wasn’t built for our bodies. We identify profound social isolation as our chief concern related to cancer. We have no choice but to band together, to stick up for each other, to make sure our voices are heard. And what I have to contribute to our efforts is a research project.

As they continued to laugh at the designation of someone “under 40” as a “young adult,” I sat in silence, and felt more and more invisible. My heart tightened. I wondered if they could see on my face, the horror and disbelief, the sadness and confusion, the stories of invisibility. After all, think about it. Someone in their thirties is in a different life stage than someone in their sixties. Who wouldn’t agree with that? A thirty year old has very different concerns, life experience, networks, and needs than a sixty year old. Throw in cancer, and the differences abound. But this blog isn’t about convincing you we are different, convincing you we have particular concerns, or convincing you we matter. Presumably, you are reading because you already agree. And if you don’t, then this blog isn’t about convincing anyway. It’s a space of documentation.

So why do normally awesome people turn into assholes when you tell them about young adult cancer patients, including folks up until age 40? Who the fuck knows. What we do know is that generally, when we tell each other of our writing projects, we are sharing heart-stories, we are sharing projects grown deep inside of each of us, we are sharing with each other what matters. So tread carefully, cancer or not. Someone is sharing an idea that is fragile, still in the process of becoming, an idea that is carefully constructed and tenderly nurtured. Someone is sharing what matters, and it’s up to us to listen.

And for gods sake, when you’re talking to someone who just finished cancer treatment and identifies as a young adult cancer patient or survivor, don’t guffaw at the designation of “young adult.” In fact, don’t guffaw at all. We laugh at cancer all the time- we call them cancer-jokes. But we don’t laugh at invisibility. And you sure as hell don’t get to laugh at us because you think our category of “us” is a ridiculous category.

We’re already an us.

And you’re a you, and right now, you’re being assholes. Normally awesome people, but assholes at present. So stop.

To sum up: Young adults get cancer. It sucks like you wouldn’t believe when the only people who look like they were born in the same decade as you at the cancer agency are accompanying their grandparents to appointments for their grandparents cancer. Until you’ve walked a mile in these shoes, which I hope you never do, shut the eff up and listen. We are already invisible enough and that has material consequences- we die more often, we are insanely isolated, and we need you to help make us visible. Don’t make it worse. Make it better. Shut up and listen. Or don’t ask the question at all.

And you know, most normally awesome people are at some point assholes. When you realize it’s you, just say- Oh, shit, sorry, that wasn’t cool of me. That’s it. That’s all you have to say. Of course, you only have to say it if you’d like to remain in the normally awesome cohort. Otherwise feel free to chill with the assholes. We’ll be here being awesome when you’re ready to slink back over, apologize, and be awesome again.