someone please cancel cancer

I feel like canceling things that begin with the letter C. All things beginning with a C would be cancelled. That includes Cancer, my dissertation Conclusion, and all future Chemo. My nose has been so up close and inside the conclusion writing lately that it’s hard to see a way out of this cancer-conclusion moment.

What are you supposed to write in these things, anyway? Didn’t I conclude each chapter, and isn’t that enough? My brilliant supervisor, in effort to keep me from cancelling, came up with this silly little metaphor that has really helped me in the past few days. It seems writing a dissertation conclusion is a little like hopping in a canoe and picking a team of paddlers. The paddlers and I have some things to discuss. Namely, youth media. And so we chat and I hope I’ve picked scholars with strong enough arms to get to the finish line.

When I first heard this canoe metaphor, I instantly remembered how the old, sunken, yellow canoe looked at the bottom of Lake Vera at Camp Celio, the summer camp I attended as a child. That yellow canoe had lake mung growing between the planks and if the water was still enough, you could even see the rotting canoe seats at the bottom of the lake. There were many ghost stories about the fate of the campers who sunk with that canoe, and what sorts of havoc their ghosts could wreck on those of us spending summers floating on Lake Vera.

I don’t want my conclusion canoe to sink. I want to paddle forward but my arms are tired, and I have a good excuse for tired arms: cancer. I need to find a better current. My fellow grad students, precious people that they are, helped me last night to see that there are lots of other canoes on this scholarly lake, and that those other canoes can point mine in the right direction. And they helped me see the total bad-ass scholars hiding in my canoe with whom I get to talk smartly. Someone will surely sound an alarm if we start to sink, and there are boats near me with life preservers in them. It was such a relief to have the research group help me figure out which way the canoe is going and what the most interesting conversations I can have with my fellow paddlers are.

Of course, my canoe is also a little sick. It has cancer. Sometimes right in the middle of an awesome conversation I realize my canoe is impaired and it makes it harder to hear the scholars talking, and sometimes I have to stop paddling and patch up holes. And sometimes the patch job makes everything worse. A hurting body makes writing and thinking exponentially more challenging. We forget about the material existence of our bodies until they scream back at us painfully. I took for granted that canoes float until my canoe started getting holes in it, and now nothing can be taken for granted. But last night, I realized that senior scholars have life preservers and other friendly grad students will happily plug up holes as fast as they can so that I can paddle to the finish line. I’m trying, it’s just horrendous, horrendous timing. The chemo is poking a shit-ton of holes in my canoe. My canoe seems to have CANCER written on the side in red letters. Normally these canoes don’t show such signs of wear until you’re at least an Associate Prof! 

So yah, I feel like cancelling. Cancer sucks. Cancel it please. Conclusions suck a little less than I thought, but writing is painful, so if the writing part can be cancelled I’ll take it. Cancer seeps into conclusion writing like a really creepy snake with beady eyes that you don’t see until it’s wrapped itself around your neck really tightly. Yah, cancer is creepy. It should be cancelled.

 

 

 

 

living like i’ll live forever

My cancerbuddy Katie recently brought to my attention the sheer ridiculousness of the comment “live like you’ll die tomorrow.” Since, I hear it everywhere. It seems everyone is telling me, or telling someone in earshot of where I am, that they should “live like they’ll die tomorrow.” WHY?!?!?!

Don’t they know, that if you live like you’ll die tomorrow you will be insanely stressed out? Don’t they know, that thinking you could die when you are 25 or 30 or 35 is terrifying? Don’t they know that you can live fully and sincerely and wholly and exuberantly, knowing that you will be alive tomorrow? Don’t they know that the precarious state of thinking you might die is horrifying? Don’t they know not being able to depend on your life to be there tomorrow can take your breath away?

Clearly, whoever coined that saying wasn’t thinking about dying in the intimate way you do when you have cancer. And those who repeat that phrase don’t really mean it. What they mean is, live fully. Take risks. Love. They have the privilege though, of living like they’ll die tomorrow without actually having to face what it might mean to consider dying tomorrow. Or next week. Or next year.

Today, someone who has fast become a friend I treasure got horrible news. Cancer makes fast friendships. Everything else falls away and you find yourself talking about the most intimate of ideas with people you just met.  We know we might not have enough time, and we’re spiraling down this pathway of madness, and so we grab a-hold of each other quickly and we try not to let go. We become fast friends even though we don’t know each other well.

For the last many days, I’ve been hoping that today my cancerbuddy S was going to get awesome news. I knew she was going to get good news, and she really needed it. I was wrong. She didn’t get the good news. She got really hard to digest news. And now the doctors don’t know how to manage her cancer. Does she want to live like she’s dying tomorrow? NO WAY. We want her to live like she’s got decades to come, because WE WANT HER TO HAVE DECADES TO COME. I want to get together with her in thirty years and laugh over how backwards it is that we talked about constipation before we talked about our favorite ice cream flavors. I am still certain we will get out of this, both of us, but right now we’re with cancer, and we’re staring death in the face. And I, for one, don’t want to “live like I’ll die tomorrow.”

When we say “live like you’re going to die tomorrow” we don’t actually want to live like we’re dying tomorrow. But people, that’s exactly the problem with language. People say what they mean except they mean something else, and it’s so confusing. And even worse, people say one thing, like “live like you’ll die tomorrow,” without understanding what it feels like to die tomorrow, and glorifying some effed up freedom they think exists with “dying tomorrow.” And in the end, all that does is make people who are actually staring death in the face misunderstood. Alienated, because there’s not much great about dying tomorrow. Enraged, because people threw around the notion that someone would possibly want to live staring death in the face.

I’m living like I’ll live for a million years. I want to feel like I can plan forever. I want to feel secure knowing that Sammy and I will be able to have babies and see them into adulthood. I want to know there is time to write the books I have inside my head. I want to go to Mexico in the next few months. I want to plan ahead. I want to travel far and wide. I want to collect cowgirl boots. I want all kinds of hundreds of things that all involve planning into the future. Mostly, I want to depend on the future and I want to know the future. I can only live this way, which is an optimistic act. A radical act, in the face of cancer. The only act I know how to act. Living like I’ll live for always, not living like I’ll die tomorrow. Living like I’ll die tomorrow feels like I’m already dead. No thanks, dudes.

I want more. I want to live like I’ll live forever.

mammogram study madness

If you’ve been paying attention to the breast health and/or breast cancer world, you’ve noticed that recently there has been a flurry of activity around mammograms. The debate is summarized by the New York Times here, where basically the issue is that a Canadian study found that mammograms don’t, on balance, save lives from breast cancer death, though they do in fact detect more breast cancer.

Here’s the link to the actual study, which is a 25 year follow up to the original study. American entities-including the American College of Radiology are hot to discredit the studies based on all kind of issues. Probably the best critique is summed up here— she outlines why and when mammograms do and don’t work, and why she thinks the study is flawed, and what she— a breast cancer surgeon herself0 would recommend. One critiques include that the data is old, and current mammogram technology is way better than it was when the data was collected. Another critique is that if mammogram saves even one life, how could we say it was something wrong? People have written personal stories about why they never get mammograms, Ask me? Politicking.

I don’t think this is the right conversation. I think we should be talking about something else, entirely.

I think we should think long and hard about why we are exporting old, tired mammogram machines to the global South.

I think we should think long and hard about why there is no reliable breast cancer screening technique for women under 40.

I think we should think long and hard about why most of the research dollars are not going to metastatic breast cancer, which is what kills.

I think we should think long and hard about the environmental causes of breast cancer.

I think we should think long and hard about how breast cancer activism has been hijacked by companies that produce carcinogens.

So no, I don’t think the whole conversation about whether the Canadian study is methodologically sound is the right conversation. I think there are much more important conversations to be had. I think we need to think about politics, carcinogens, activism, lives. I think we need to think about why its OK to send “old mammogram machines” to the global South but not OK to use data from those same old mammogram machines in a study in the global North. I think we need to think about why no one wants to talk about the women with metastatic breast cancer, and I think we need to think about why there is no screening technique at all for younger women that is in any way reliable. Oh right, there is- MRI- but MRI is such an expensive technology it’s only available after a cancer diagnosis. That’s a win. Or a fail.

Let’s talk about some of the real issues, instead of whether or not these Canadian researchers should be slammed. I mean, really. We all know mammogram isn’t the greatest of technologies: in fact, its horribly flawed. Let’s talk about WHY that is, about the companies behind mammogram, about how Avon and Komen are wrapped in this debate, about where Chevron fits and about activism and environment and the production of plastics.

I just think this flurry of attention is entirely not what we need to talk about. It’s like incessant chatter on entirely the wrong plane.

cancer-cation

Cancer-cation is when you leave cancer behind, sort of. Of course, it’s still in you. It still defines you. It’s still the lens through which you see the world.

But during cancer-cation, you don’t talk about radiation decisions or mastectomy what-ifs, and you don’t answer when the Cancer Agency calls, and you don’t give a f*ck snowflakes are falling on your scalp. During cancer-cation, you order room service and take private ski lessons and talk about which drum-set stool your husband should buy. During cancer-cation, you spend lots of money and use your parents’ credit cards and don’t worry about the consequences. During cancer-cation, you see the First Person You Knew Who Had Breast Cancer, before you knew all the People With Breast Cancer, and you don’t really talk very much about cancer, because it’s not very fun. During cancer-cation, you drink lattes and don’t always ask for almond milk instead of regular milk, and you eat nachos that have corn in them even though the naturopath put an X over corn consumption, and you imagine coming skiing every Monday, and kind of think, maybe you should do that, and really believe it. During cancer-cation, you come home and the kitten has not destroyed a single role of toilet paper and the tulips are still alive in the vase on the table, and there is no laundry to do. During cancer-cation, you get a sort-of-cancer-break, even though you still have to be cancer on the inside of the cancer-cation.

But you don’t totally get a break. The little hammering men that have taken up residence in your bones, thanks to the latest chemo, refuse to stop hammering, though all the exercise makes them tired and they take naps. The skin flap between your fore-finger and thumb still is swollen and painful, and the skin on the bottom of your feet continues to peel off in the grossest possible side effect you could imagine. When you’re skiing down the mountain, you still know you have cancer, and on the massage question-sheet, there’s a spot to check “cancer,” and you do. And then the masseuse takes it upon herself to give you a hundred cancer-tips even though she’s never had cancer, and so you leave her a very reduced tip and a note explaining being told to juice daily and read certain health food books is not very relaxing. You still wonder if the pain in your finger nails means they will fall off, and you wonder if your ski goggles are enough to camouflage your eyelash-less eyelids, and then later when you see people without the goggles you wish you’d glued on eyelashes. You still wonder if maybe you should just tell the plastic surgeon to fix your cancer boob up with the belly fat, and leave the healthy boob untouched, even if that means they are uneven.

But, it’s still cancer-cation. It’s still kind of awesome. It still means you get home from cancer-cation and take bubble baths and eat canteloupe and berries and cheese. It still means you’re so excited to only have three chemos left. It still means wine means something special. It still means you had a whole ton of fun with the Argentine ski instructor and Sammy on the slopes. It still means there’s no dissertation and no grading and no music composing and no students and no postdoc apps until tomorrow. We like those things, but they’re better when you get to come back to them after the spa and ski. It still is awesome.

My body will be tired tomorrow, in that awesome kind of “I did something” way. I’ve been tired that way for the past few days, thank you kick-boxing. A word on kick-boxing: I think all the cancer-people should do it, and everyone else, too. As the yoga teacher who took me put it, “it’s great for the rage.” She’s absolutely right. So satisfying. Hitting things is really, really awesome. Loved it, and my calves felt it for a day or so. Enter, spa. Problem solved. Generally, though, sweating a lot, working my ass off, risking whizzing down mountains, trying to hold postures longer, kicking pads, hitting tennis balls, lifting heavier and heavier and heavier weights- awesome, makes me feel better, more alive. Less dead.

I think I need more active moments in my life. More kick-boxing. More yoga. More outside. More ski. More swim. More hiking. More movement. More, more, more.

Cancer-cation, I want more of you.

P.S. As a side note, this is Presidents’ Day in the States. Which means it was a great weekend for us to escape, though Canada doesn’t celebrate Presidents’ Day weekend, because this is the weekend my fam always went to “the snow,” a.k.a. Tahoe, though this weekend I think I’m the only one anywhere near the snow….

passing

Today, we’re relaxing a la grandiose. We spent the afternoon at the Scandinave, soaking in hot tubs and relaxing in saunas while the sky dumped buckets and buckets of snow on us. It was delightful. Now we’re snuggled in at the Fairmount, and we’re watching the Olympics, and we ordered room service. Oh la la! Tomorrow we’ll be on the slopes.

I’ve been thinking a lot today about passing. Passing as healthy, that is. I went bald at the spa. I soaked in the hot water and the snowflakes fell on my head and melted right away, and my pate was cold. I didn’t pass. That’s why some women wear wigs, but not to the spa. They wear same wig everyday, wigs that look like their hair. Any dumbass should be able to figure out I don’t have hair. I mean, I wear a different wig everyday. And sometimes I wear a purple wig. Come on, dudes. If you can’t put two and two together I probably need to find smarter friends. Kidding. Sort of. Last week, a colleague who doesn’t know (well, I haven’t told her explicitly) that I have cancer saw my wig, different than the wigs I’ve worn on the last two days I’ve bumped into her, and asked, “Is this a performance?” I shrugged. I don’t know what it is. I wear wigs, too, but I today I recognized that act as explicitly not about passing. It’s a lavish, extravagant not-passing. Maybe it’s a performance. I kind of like thinking about it as a performance.

I don’t want to pass. I don’t want to go around telling you, “I have cancer,” but obviously  I’m not healthy, and despite the advice from “Look Good, Feel Better,” which could be more aptly named, “Try to Look Normal, Make Everyone Else Feel Better,” I don’t have an insane desire to fool the world. I don’t care if people wonder. It’s fucked. Maybe if people wonder they’ll do something. My wigs- and this weekend on the slopes, my hats- are an extravagant not-passing.

I mean, sometimes I worry. Like I wore the long platinum wig to the bank, and the teller who goes to my yoga studio asked “how I got my hair like that.” I shrugged. Then I worried if I would have to wear only the long platinum wig to the bank, so she wouldn’t ask more, and I wouldn’t have to provide cancer-explanation about why my hair was blonde, then red, then purple, then short. Then I worried she’d find me out, see me bald at yoga and think I lied to her. And then I stopped for a second to think about if I cared if this girl thought I lied to her? Nope. Besides, I didn’t lie. I just didn’t explain. Explaining, educating, it’s exhausting. Often it leads to me consoling the other person, and hello folks, I’m the one with cancer. So, no, I don’t care. She’ll see me at yoga eventually. Who cares.

I don’t want to pass as something I’m not. It doesn’t seem fair to me, in fact it seems cruel, to ask me to participate in becoming who I’m not. It seems cruel because it denies my reality, it denies the horror and the fear and the madness. Cancer is real. It’s real in young people. My baldness is that realness. My body is invaded. It forces you to think about walking around, healthy, and it forces us all to think about the privilege of health, and to think about plastics and pesticides and health care. It’s brilliantly, horrifically, real. I hope.

So no, I’m not interested in passing.

I’m interested in playing. I’m interested in performance. I’m interested in real.

disillusioned

I feel disillusioned. There is a way in which cancer grabs any last shred of not knowing, any leftover innocence and throws it to the wind, never to be found again. I really doubt I’ll ever feel the kind of innocence I didn’t even know I had about life from the pre-cancer times. I don’t think about the future as a wide, expansive space of possibility anymore.

It seems more like a life or death game, where you need to sprint from shelter across a field to another shelter, with snipers shooting at the empty field. You don’t know, in this game, if there is another field you will need to run across after you make it to the shelter, or how many fields there are after that, or how long they might be, or if your comrades will be shot at and wounded or killed while you cross the field together. You regroup with the others at each shelter, holding each other carefully and checking for wounds. We patch up the scrapes and sleep for a while before we build enough energy to peek out again, peer across at the next field, and wonder if the next forest that will provide shelter will be the forest that is actually the healthy world again, if it will mean we are done sprinting, done dodging bullets, done wiping wounds. Sometimes people are catapulted from the shelter into the middle of the field, sometimes they are made to languish in the shelter, not knowing when they will need to sprint across the field they are staring at, amassing information as they wait and watch others cross, anxiety mounting. There is no way to know. And so we cling tightly to each other and hold hands and whisper encouragement and duck our heads and start sprinting. It’s terrifyingly comforting to have each other, the only people who know what it’s like to sprint across that field, and to hold so tightly to each other and know we won’t all get across to safety in one piece.

The disillusionment isn’t only cancer. It’s also the academic job market. It’s wondering if I should duck out now, or keep slogging through, hoping to beat the odds. I knew these odds existed when I entered graduate school, and I’ve done *everything right* as they say, publishing and conferencing and teaching a little and finishing the diss. Still, a great many of us know brilliant young scholars with a Ph.D. and without a tenure track job. I just now find myself in a double-bind of unknowing.

All this unknowing, this deep sense of disillusionment, this feeling that the world is not as I thought it was, but actually, much crueler than I ever imagined makes me want to speed things up. It makes me want to bandage everyone in a hurry and get through the sniper fields. It makes me want nothing in moderation, and it makes me want everything in excess. It makes me wonder if we will every again catch our breath long enough to wonder at the nighttime sky. It makes me want to speed up and slow down, fit more into the afternoon, stay up all night long. It makes me wonder if this is the new normal, operating at high intensity, heightened awareness and anxiety, speed so fast it might be a blur. Will I have time to think about whether the academic job market will be kind to me? I do not know.

And so I haven’t posted, lately, feeling this way. Wondering. I’ve wondered what to post. I’ve started many a draft. You’ve checked in and wondered what’s up, where the writing that sometimes just gushes out of me is, if everything is all right. I just don’t know what to write. I can’t decide. I don’t know what to think, or which way is up. It’s confusing. It’s disillusioning.

make-up? cover-up?

So when you have cancer, and you are a girl, you get to go to “Look Good, Feel Better.” This is a program where pink-apron-clad middle aged volunteer ladies dump out boxes of free make-up in front of women undergoing cancer treatment. Then, one of the middle-aged pink-clad volunteer ladies stands behind a flip chart and reads make-up application techniques from a script while the other middle-aged pink-clad volunteer ladies float about the room making sure you know the difference between concealer and foundation. They say things like, “dab here to cover up those tired eyes, so you feel normal.” Notice she said feel, as in, you are not normal but make-up can disguise your abnormal cancer! Come learn how to cover up your cancer! All it takes is a little blush to disguise the fact that your body is not producing red blood cells and your face is drained of color! Also, we got this amazing tidbit: draw dots on your eyelids when your lashes fall out, to create the illusion of lashes, and everyone will be tricked! Don’t use fake lashes, they warned, and I then piped up, “Well, everyone I know uses fake lashes during chemo.” To be clear, by everyone I know, I meant one fierce yoga teacher told me she used fake lashes during chemo. So, I exaggerated a little. This woman’s eye-shadow was exaggerated, too. Maybe I’m being too harsh, after all she only wanted me to know if I exaggerated my make-up no one will know I have cancer. What if I want them to know?

Did you know one in three Americans will have an invasive cancer in their lifetimes? That makes cancer normal. Maybe I should draw some bags under these ladies eyes so they can “feel normal.”In an especially odd part of the workshop, once you are all make-up-ed (and presumably, feeling “better”) they model a bunch of wigs on one participant. I watched silently after my first contribution was brushed away, quiet like a good participant, even though I’ve been around and around the whole wig ordeal a couple times. It was obvious I was not to contribute too much: these pink-ladies with their drawn-on eyebrows and bleached hair had the answers, I should listen and receive their make-up wisdom.

But seriously, make-up wisdom from a woman with bubble-gum pink lips and hair fried from bleaching and perming? I would have listened to one of these sexy old women, but these pink-clad middle-aged ladies were a bit much for me. I was however, ecstatic to have randomly signed up for this event with my cancerbuddy from the exercise study, and there was a third young woman in the room, too. That’s a fifty fifty split between us and the grandmas, people! Then again, one of these grandmas had on amazing red lipstick that was so strong she couldn’t wipe it off to try on the freebies, so I guess some grandmas are a total win in cancerland.

So I hopped on my bike after this make-up session, and figured out how to balance this giantImage box on my handlebars, and my nose was dripping snot the consistency of rain water because I have no nose-hairs (at least this is my supposition), and off I rode, hot pink box balanced carefully. I did not get very far. As soon as I tried to wipe the rainwater snot from my nose, I heard one of the handles rip off the box. I hoped the other would hold, but you know where this is going. Next thing I know, the box is flying through the air and there is foundation and moisturizer  in the middle of the street. I stopped, packaged it up, and re-balanced the now-handle-less box. AND THEN IT HAPPENED AGAIN. This time, the bottom of the box fell out.

I started laughing uncontrollably. It was just beyond ridiculous, me and the bike and the rainwater snot and the make-up in the Imagemiddle of the street TWICE. I mean COME ON. This time, a nice lady stopped and gave me plastic grocery bags. There is hope for humanity, after all. And humanity absolutely needs hope when the solution to making cancer patients feel better is covering up cancer with make-up full of carcinogens. Don’t these people want me to live? Wouldn’t it be ironic to get a second cancer from the carcinogens in make-up gifted to you to so you could “feel better?”

Isn’t it nuts that corporate entities can destroy the environment-so much that cancer is invading young bodies and the reason cited is more often than not “environmental exposure?” Then they turn around and gift make-up so that those of us with cancerous bodies can disguise any hint of cancer, so that no one has to know I have cancer? You know what that sounds like to me? It sounds like a totally warped effort to conceal the horrific cancer-danger in our world and to thwart the possibility that those of us with cancer start a freakin’ revolution. Better to hide the cancer.

Don’t get me wrong. I just had a lengthy text exchange with my cousin about how maybe its best to wear red lipstick every single day. I think I might even try that for a little while, so get ready for some bold lip color. I wear mascara. I like sparkles and glitter and swishy girly shiny things. I’m jazzed for the free cuticle cream and  MAC eye shadow I got in exchange for flashing my cancer card. I just think the box of make-up, splayed across the pavement was an omen. Maybe I should be careful. The box of make-up didn’t want me. I don’t want the cancer. It’s just so fortuitous.

In the last 48 hours, I have been in the polar-opposite cancer-spaces. In the first space, I sat with other young adults with cancer as they poured out their hearts. I listened, in the grip of terror, to the stories of my peers. I was terrified to look at these young people and know we walk the same path, each of us a little differently. The space was quiet and reflective and full of love even in the face of terrifying realities. There was music and we sang. There was no sugar-coating. There was only real. Deeply, deeply real. The kind of real it’s easy to forget exists when we live our busy lives without cancer.

And then there was this make-up space, where there was no real at all, only lessons on drawing eye brows that would fool the world. The former was a space where we could admit what is happening in our lives and be heard; the latter is a space we are taught to hide our ugly spots with concealer and cheer everyone up with eyelash-dot-illusions and spend hundreds of dollars on wigs.

Real-space with feeling, with terror, with love, or learn-to-hide-space with fake painted eyebrows and dot eyelashes? I know which space I prefer. And where will I find you?

Image

knowing cancer

Knowing cancer. I mean knowing. Feeling. Witnessing. Hearing. Imagining.

Trying to find others who know in this embodied way, too, and when you collide with each other in the world, knowing, yet needing to run away, run to the end of the earth, run to escape the sheer terror, the horror, the sadness, the fear, the loneliness that only these people share, reflect back, know. We know by knowing. We hurt for knowing. The world is cruel. That is how it feels, to know these stories. The world keeps spinning, people keep rushing to work. I am blindsided that something doesn’t stop, doesn’t  slam in the face of this cancerous force, doesn’t grind the earth to a halt, won’t make the litany of pain at the edges of every community subside. I would do anything to make young cancer subside. Anything, and we are left with sheer powerlessness and a deep need for connection. Knowing is both the desperate need to know, to witness, to share a space with others who know and being unable to turn away from the edges or knowing together, unable to unknow, no matter how cold the air, no matter how fast the run, no matter how hard you squeeze your eyes shut. Young adult cancer is marching on.