personal shit storms

More and more, I notice everyone is living in the middle of their own personal shit storm. We are all just wondering the earth, in a daze as shit storms encircle us, and each of us has our own personal shit in a storm around our hearts, souls, and bodies. Sometimes, it seems like everything is combusting. Like things are falling, like nothing will ever work, like cancer is ravaging all the bodies, like the world is cleaving in halves that might never fit together again. And yet somehow, again and again we persist. Again and again we believe something will change, again and again we keep writing. Again and again and again.

Yesterday I saw Rosi Braidotti speak. I got shivers. She is so cool. So smart. So funny. She may be the most brilliant speaker I’ve ever seen. She was funny, so funny. She was confident, she didn’t read her notes, and it was so clear she was absolutely in love with what she was doing. She’s the kind of academic I aspire to be- she even told old feminist jokes that she thought were hilarious (we also thought they were hilarious: “If you can put one man on the moon, why can’t put them all on the moon?”) She talked of formulations of the subject, of humanity, or re-imagining how it is that we theorize about collectivity. She said it’s not a time for deconstruction, she said it’s a time for reconstruction. A time for imagining new relationalities, thinking new alliance, experimenting with thought and with action. It was so hopeful and I was so inspired.

It is good to be inspired, because I notice lately that being fully in the moment is weighty. There are real cliffs we can tumble down, and sometimes it is so foggy we cannot see the edge of the path. There are big, giant tree roots obstructing our paths and sometimes we trip and fall, and our friends are sometimes so far away they cannot hear us as we thud to the ground and cry out for help. Lately, the emotions are all over the place. And not just mine. Friends look up at me in tears, and then get a hopeful job market email and start a dance party. We all seem to be on a roller-coaster ride through a thousand transitions, our hopes sky-high one second and our hearts aching the next.

It’s important, I think, to remember we’re a we. We’re a network, and our shit storms vibrate and we feel each other. It’s important to do things because they feel right. This morning I just felt like I really needed to bring my bff with the vampire red hair falling in curls down her back a little chocolate cake. Actually I thought about bringing her a jar full of candy, because the woman adores candy, but then I decided cake was better. No reason, I just thought she needed some chocolate dropped off at work to make her day a little brighter, and I thought she needed it now. So I picked out a tiny chocolate-carmel torte with some glittery frosting and a curlicue on top, and wrote on the box “You need sugar to fight the patriarchy. Love you!” and paired it with sparkling apple juice and told the secretary to tell my bff with the vampire red hair falling in curls down her back that these two packages, adorned with curled ribbon, were from the fairies.

Of course she knew it was me, because I love shit like that, and she called. And the next thing I knew, we were hugging on the side walk and she was telling me about how hard her morning was and how much she totally needed a chocolate torte and sparkling apple juice wrapped up in ugly coloured curled ribbon. Because you just never know when your dear ones need a little chocolate torte with a curlicue on top. It could be now, people. And if something in your heart is telling you it’s now, go buy a chocolate torte and say its from the fairies.

We’re all in our own personal shit storms. But everyone else’s shit storms kind of make the ground vibrate and you can feel it in your feet, and sometimes you know that you need to pull your head out of your shit storm and step inside someone else’s. And you know that you can just listen to how hard it is, and know how hard it is, and even if you wish desperately you could fix it, you can even suppress the urge to say you wish you could fix it, and you definitely should suppress the urge to say “At least….” Sometimes it’s hard to be an oak tree inside someone else’s shit storm, but that’s what we need to be. Rooted, secure, unwavering, and bearing chocolate. It’s hard to be with others when they’re in pain. It’s hard to watch someone hurt, especially when all you want to do is erase the hurt and shower them in hope and love and possibility and solutions. Of course that’s never a good idea, because what we need in shit storms is an oak tree to grasp, not more shit flying around in the storm, and besides, the glittery stuff you throw into a shit storm gets shit stuck to it almost immediately and then you can’t see the glitter anymore, only more shit flying in the storm.

So to all my dear ones who were oak trees in all my multiple cancer, academic, surgical, fertility and otherwise shit storms, thank you. I’ll strive to be an oak tree in your shit storm. And I’ll tell you Rosi Braidotti’s favourite feminist jokes while we’re at it. Because who doesn’t need some good feminist jokes re-emerging from the second wave in the midst of a shit storm?

forget cancer

Someone told me the other day, that at some point I should “forget about cancer.” As if cancer was something I could forget about. As if I could forget about the tightness in my chest from the seven surgeries, as if I could forget about the way the hormone therapy I will take for the next ten years at least makes my joints ache and my stomach bloat, as if I could forget when my schedule is littered with doctor appointments. It’s ridiculous. It hasn’t even been a year since I finished treatment, and frankly, I think I’m doing pretty well. Sure, I think about cancer sometimes.  Of course, because I need to process what happened to my body as the medical system ravaged my health in order to kill some cells I didn’t even know were killing me. So yah, I think about cancer. Here are some of the other things I think about: the strange topics my undergrads choose to write on for their assignments like alien pregnancies, where to find hominy for the pozole I want to make, how to situate myself for an academic job, what to say in visa applications to make sure S and I can stay in the same country, when my large kitten will slow down on the food intake, and how many hours my ethics application for my new project will take.

So sure, forget about cancer. Do you know what word can bring me- and every other young adult who has dealt with aggressive chemotherapies, multiple surgeries, uncontrollably dividing cells- to my knees? Recurrence. Relapse. Do you know how many times I’ve heard that word in the past week? Once, when my doctor dissected the survival probabilities in relation to recurrence for each of my hormone therapy options. Once, when my cancer friend called me to tell me her cancer has migrated outside of her breast and taken up residence in places that the doctors don’t know how to heal. Six times, when I tried to articulate the cost-benefit of this and that hormone therapy to friends after my appointment. Ah, forgetting. As if. It lives in my body, the cancer-knowledge, and while I can live well with it, I cannot forget. To forget would be absurd.

And so onward. Just because I ask you a cancer-question, or tell you a cancer-story doesn’t mean I am obsessed. It doesn’t mean I only think about cancer. It doesn’t mean I need to forget. It does mean I need to share that story, ask this question, enjoy your four-letter response because profanity is basically the only appropriate response. Cancer will always be there. I will always see through this frame. It might become more or less prominent, the lens might change colour and the fear might erode, but it’s always going to be there. The scars zig zagging across my rib cage might fade but they are etched permanently into my body. They will heal, and fade, and change, but they will always, always be there.

The Song

Because I know you are all dying to hear THE SONG. In its final version, you can download it here: http://www.katereid.net. Simply go to Music, then New Singles, then bam! Download the MP3 and see if you can listen to it as many times as me (as if that were even remotely possible!)

As you all know, I love it. I love it because it’s real. I love it because it’s healing. I love it because it gives me a way to speak back to the total effed up-ness of breast cancer, and I can participate in that speak-back while I’m sitting on the bus, shaving my legs, or making tailoring a rubric for the stop motion animation I just assigned my undergrads. I can sing loudly at the top of my lungs when I’m by myself, I can mouth the words when others are around, or I can play it in the background while I write. I actually think playing it in the background is one of the most powerful moments, because there’s a soundtrack to this really painful, insane, experience that feels so profoundly un-real, and having that soundtrack lets me know in my body that it happened without having to dive into these intensive conversations about it all. Cancer is always there, and the song in the background all the time makes it real that it’s always there, without having to make cancer always central. It’s there and not there. It’s the landscape of how my life is, and listening to the song acknowledges that all the time for me, whether I am on the bus wondering if the woman across the aisle wearing a wrap on her head is cancer-bald underneath or as I peruse the vegetable selection for the best bell peppers. The Song is a way to talk about cancer while hating the happy-happy pink ribbons, be critical of warrior narratives while laughing at self-identifying in a song as a poststructuralist feminist, and say dude- what you think is under this shirt is not what is under this shirt and it’s that way because of heteronormative neoliberal patriarchal capitalism, all at the same time.

It’s just so perfect. We’re working right now on a fundraising campaign, because we want to make a MUSIC VIDEO! Keep your eyes peeled for that, as it’s gonna be kind of awesome and we will absolutely need your support. But until then, I hope you enjoy this song as much as Kate and I do, though even she says she’s never known anyone to listen to a song as many times as I’ve listened to Breast Cancer Pink. Do let us know what you think of it! Happy listening!

friends to the rescue

The last three days have been horrendous. Horrendous to the tune of rolling my eyes at nurses, crying over spilled milk, and being totally distracted at yoga. As the expander-implant switch-out surgery approached, I was fine. Totally fine. Not even thinking about cancer. Immersed in job applications, in prepping for campus visits, in when we are going to take down the Christmas tree. Not immersed in cancer.

And then boom. They called to inform me about my pre-opp instructions and to let me know what time to show up at the hospital, and things spiraled out of control. All I can say is, thank goodness there are friends who will go shopping for bright blue professorial shoes with me, and friends who will call late at night and then call another friend and tell them to call two minutes later, and friends who will make batches and batches of delicious soul-soup and leave it in my fridge. Thank goodness.

Yesterday, Sam and I rolled into the hospital mid-day, and that point, I’d already had shopping therapy with one friend, tea with another, and a hug with another. The only word to describe the nurse I got is gruff. Like really gruff. Finally, after she told me it was “more convenient for her” to have me give her all my belongings immediately even though it meant I would have to wait for three hours with nothing. I definitely needed my phone to read the multiple and oh so kind texts coming from every which direction. I said, “What is your problem? I’ve dealt with many nurses and never have I been treated like this. I am a young adult who had cancer and this is hard enough already, and I want my sweater and my cell phone until I have to go in. So please make it more convenient for me, not for you, as I am the patient and your job is to take care of me and I am telling you what I need, and please be nice.” She told me “that was how she practiced.” I was pissed. Livid. When she got all up in arms about my nose ring (which the doctors said I could keep in) I looked at her and said, “You really don’t get it, do you? I will not let you put that IV in my arm until you listen to this song, because you really don’t get it.” She huffed and puffed but I was firm. I made her  listen. She said very little, except, “Now can I put your IV in?”  I don’t care. I complained. I told the other nurses. I told the doctors. I told my surgeon. I told the woman at the front desk. I just don’t care. And that woman should not be nursing.

And then I was in the OR, and Dr. Yoga Surgeon was there, and she said everything would be fine and since I trust her I kind of believed, and then I was dizzy and floating away, and then the doctor was pulling the tube out of my throat and I was waking up in recovery. And soon enough, Dr. Yoga Surgeon was there again, telling me I can’t go to yoga for a month. A month! Umm, yah right. I’ll take ten days. Maybe. But I’ll go crazy otherwise! Crazy.

And then we came home, and Ariana and Kate were here with food and love, and I was still a little woozy from the meds, but I could finally eat which was excellent because I was starving! And that was that, at least for this surgery. I am intensely, forever, always grateful to those of you who have rallied around, who have made this easier and who have sat close when it couldn’t be made easier. I am lucky to be surrounded by friends who don’t balk at my iodine-reddened chest, or at the multiple bandages, or at the high level of intensity that is cancer.

Today, I took the whole day off of work. Well, mostly. I answered a hundred student emails because the semester started yesterday and they’ve already found reason to panic, and I have to prep for a post-doc interview tomorrow, but otherwise, I took the day off. And I’m working on the song fundraising video, and it’s so awesome. We’re going to make a music video! Woo! If you don’t know about the song already, read about it here and here,  and if you want a copy of the final version, email me at chelseyhauge@gmail.com And for the rest of tonight, feeling grateful for friends, for dear ones, for soup, for songs, for creativity, for cats, for love, and for this surgery being over.

A new body, another surgery.

FullSizeRenderIt’s kind of dreamy, isn’t it? Especially with the unpainted cast, the one on the far left, fading into the white. That body is fading away, that one that I used to have, that one that was carefree, healthy, hopeful, that one that needed nothing more than a PhD and a big dream to get through life. Then came the middle cast, she with a dissertation on one breast and pathology reports on the other. The middle cast, she with one foot in cancerland and one foot in academia. The middle cast, the girl tiding up wedding ends and looking forward to life after the big part and white dress. The middle cast, she who could not believe the life she was living, the world she was thrust into, the utter not knowing, the horrible cancer violence, the total and consistent clash of worlds, where languages clash and don’t exist, where amputation is pending. And finally, the now cast, she who needs to cover a fake boob with yarn to soften it, even as the heart from the middle pumps into today’s body, connecting the two.

And Monday, a new body. Another surgery. Another fake breast, this one softer, or so they say. Another opportunity for the surgeons to get it right, fool the world, hide my cancer, make my body presentable in the patriarchy. Another opportunity for my to lie still, my body quieted and immobile. Another opportunity for them to take control, another time I have to trust my surgeon with… my life. Another opportunity to wonder, to question, to become enraged, to be hopeful, to feel hateful, to wish I had another life, to imagine this is a terrible nightmare, to will it to be untrue.

Tonight, we are watching a movie. And as we snuggle on the couch and our overgrown kitten licks my hair, which the hairdresser dyed too red this afternoon, I can’t help but look up at the top of the bookshelf, and know that again, a body I cannot recognize will greet me in the mirror. I can’t help but feel spiteful, jealous, and angry. Certainly, I am grateful to be alive. I am grateful to be surrounded by brilliant people. I am grateful to call world-class doctors my own. But I am still angry. I am still sad, to lose again, yet another breast shape. Another way my body was, another shape I grew to recognize, if I did so spitefully. Of course this surgery isn’t worth the boob going away party, the fanfare and the gathering- but it still sucks. And as I look up on our book shelf, I know. I know it’s not fair. I know it’s unjust. I know I won’t be able to recognize my body. I know it isn’t what I want.

But that’s how cancer is, isn’t it? Not what I want, and no way to control it. That’s how cancer is.

cancersplaining

It appears I just cannot leave this one alone. The cancer networked media-sphere is popping, overflowing with blog posts and angry Facebook status and pissed the f*ck off tweets. I just have to echo… what the fuck? It seems we have a man-doctor cancersplaining. Deathsplaining. Mansplaining He’s doing all kinds of f*cked intersectional splaining. Because didn’t you know, cancer is the best death? At least, according to this doctor who has never had cancer, according to this one old white guy, Dr. Richard Smith, cancer is the best way to die. He writes:

So death from cancer is the best, the closest to the death that Buñuel wanted and had. You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.

This is, I recognise, a romantic view of dying, but it is achievable with love, morphine, and whisky. But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.

Buddy, I got something to tell you, and so does everybody else who has/had cancer: it sucks, and there’s often not time to say goodbye or reflect, to travel far and wide or tick items off a bucket list. In fact most of the time, time is spent in hospitals, feeling horribly ill, attending doctors appointments, having blood drawn. It’s horrendous. But others have said that better, already, and I won’t repeat it.

What I will say is this: when you’re horribly ill whiskey loses its appeal, almost entirely.

And also, this: stop wasting billions to cure cancer? You do know that there is no cure, and that cancer has no regard for whom it strikes. What about the young father? What about this young woman, who wanted live sincerely? What about the brand-new PhD, searching for her first academic job? What about this beautiful young newlywed, who didn’t want to burden her family with her slow and painful demise? Cancer would be a good death for these people? Cancer was a good death for these people? Fuck you. These people were right smack in the middle of living awesome, and the world needed them so badly, and cancer stole them. It was not a good death. And millions should be spent, billions, trillions, to avenge their deaths, and to hold the lives of those most affected by cancer, those most affected by aggressive cancer, those most affected by little access to cancer health care as central and important. Communities of color, adolescents and young adults (15-40), LGBTQ people, poor people, rural people have a harder time healing from cancer, curing cancer, dealing with cancer, accessing cancer-related care. GET THEM WHAT THEY NEED AND STOP SAYING STUPID SHIT.

Like have you been watching movies where people die of cancer? Shockingly, real life is not like movie life. Maybe the doctors doesn’t know this because he’s a privileged white man and he’s never felt that disjuncture, between the narratives we watch in movies and the in/mobility of bodies that exist on the margins. Maybe he can live in fantasy-world, where knowing you will die makes the end of life balmy, and whiskey makes it manageable. But I certainly don’t think he gets to claim that on BJM until he gets a passport to the world of the sick, a passport with stamps to scans and chemotherapy and surgery. A passport to a world that has no place in movie-life.

It seems so odd, that in a culture where death is so taboo, we talk about cancer being a good way to die, because suddenly we can talk about death? Dying doesn’t give us the language to discuss death. It mostly only gives us anger, misunderstanding, tears, and a desire to crawl under the covers and never come out. We need language, rituals, communities, ways to talk about hard things like death. Because we apparently have none, or have such emaciated rituals and traditions surrounding death, we have to invent.

Maybe it isn’t odd at all- after all, there’s that ill-informed saying “live like you’ll die tomorrow.” If you actually do that, you won’t be parachuting or traveling to new countries. If you actually live like you’ll die tomorrow, you will have no way to metabolize that information and you probably will feel intensely tortured. I know it’s a saying, but sayings are situated in ideologies, and it’s a stupid saying, a saying that reflects a wild misunderstanding of death and total inability to actually talk about death.

So if it were me, I’d want to die in an instant. Here today, gone in the blink of an eye. No warning. No medicines. No prolonged discussions of percent chances or new treatments or tentative trials. Just, dead, and suddenly. And frankly, I think that would be easier for those I love, too. I want this doctor to receive a chemotherapy infusion, and watch as their friend cries big, giant tears because it’s so hard to understand why this is happening. I want this doctor to buy out the organic grapes in February because that’s the only food their partner can stomach because the medicines have made total muck out their partners’ intestinal lining. I want this doctor to sit in a waiting room and wait for a doctor to tell them if their loved one survived a surgery. Cancer is not easy on families. Cancer deaths are also not easy on families. It ain’t a cake-walk watching someone you love die, for a long and drawn out time, especially when there are no rituals and there is no language. It’s hard to invent mid-crisis.

So, I add my voice to the many voices calling out this stupid blog post. I couldn’t help it. Now turn away, and look at the blogs written by those with metastatic cancer, with those who are dying, with those who cannot roll their eyes enough at this stupid post. I mean, really?  Cancersplaining? Really.

a good enough 2015

This year, I want a good enough year. I’m not into resolutions. They suppose there is something to resolve, which implies something about our selves is wrong, not enough, marred and that we can fix it if we just try hard enough. Cue, resolutions: solutions to all the things that are wrong about us, solutions for a better year. Because this year wasn’t good enough? Over rated. I always wonder why people can’t instead, list all the awesome things and appreciate all the parts of themselves they love. No resolving, just reveling in something that seems kinda cool.

I quite possibly had one of the most shit-astic years I will ever have. And yet, it was good enough. My friends were not perfect, but they were good enough. Sometimes they would come with me to chemo, and they would cry through the whole treatment even though I was the one hooked up to poison, and sometimes they would say absolutely the wrong thing, and sometimes they would drop off the face of the earth when I needed them most. But sometimes they would wait with me for hours on doctors who were running late, and sometimes they would put up with my cranky illness, and sometimes they would take me out to lunch just because, and sometimes they’d show up with tea and cookies at the exactly right moment. They were most definitely good enough.

This year, I want to be filled with good enough. I want my good enough friends, and lots of them. I want good enough attempts at making new friends. I want good enough tries at being present for my friends as they navigate their own personal catastrophes. Everyone has them, you know. Catastrophes. Throughout New Years, I watched people I love dearly deal with violence and death and turmoil. For them, I want good enough. Not perfect, but good enough. Good enough tea when it’s really hard. Good enough companionship. Good enough decisions. Good enough sleep.

In 2014, I stared into the mirror and bemoaned my bald head. It did not feel good enough. But it was good enough, because it got me to 2015. It was good enough because I could disguise it, and I did when I felt like it and I didn’t when I didn’t feel like it, and it was good enough because eventually, my hair grew back. In 2014, they took my left tit away, and they didn’t discover a single screening mechanism or treatment that would make me totally, forever safe from dying of cancer. But they did what they could, and I was angry, and it wasn’t what I wanted, but it was good enough. I am still arguing with them about getting an MRI, and I’m not very good at advocating for myself anymore because I am tired, but I am doing good enough advocating, and I will get the screening I need, maybe, sometime, soon. Mammogram is not good enough, and it’s failed me already, and I need what is good enough, and an MRI is good enough. And between now and when my docs finally order my MRI, my good enough friends will help me strategize and eventually, I will get the good enough screening. It won’t be perfect, and it never will be. So I’m throwing perfect out the window.

I want good enough for us. Good enough work, good enough groceries, good enough yoga and good enough dreams. Good enough, good enough, good enough. It doesn’t have to be perfect, it doesn’t have to be what we imagined, it doesn’t have to be what we should do, or could do, or would do. It only has to be what is, and we have to be in the middle of it, doing yoga and sharing food and laughter and tears and going about our lives, each a day at a time, a moment at a time, knowing that whatever it is, it is good enough.

Here’s to 2015, a good enough year.