Another One With The Cancer

There’s something I haven’t written about. Something that is sort of mine to tell, and sort of not. Something that is haunting.

My mom has breast cancer.

Yah, that’s right. You read it right. Only a few years after I was diagnosed and treated for breast cancer, my mom gets a call from her own doctor. Her, too. She said I could write about it.

When I first heard about a month ago, it actually seemed impossible. It was already impossible enough, for me to have had breast cancer at 29. It was already impossible enough. I have imagined a million ways this cancer thing could go. I have imagined a recurrence, and how I would break the news. I have wondered if I had a recurrence, if I would be like those rare few who survive despite the grim 0% survival rates for metastatic breast cancer. I have wondered if I’ll never have a recurrence, and if many decades from now, they will have found a cure and I’ll tell the story of when it was still so life threatening, so harrowing, so different. I have wondered if I’ll have a recurrence and die before I turn forty, and what the world would look like without me in it. I have wondered if I’ll ever spend a whole week, a whole month, a whole year even, where I don’t think about cancer. I have wondered if my cancer friends will all make it with me into the next decade, and the next, and the next. I have wondered about a million ways this cancer thing could go.

In none of these multiple scenarios that I’ve imagined, dreamed of, and worried about does my mother have breast cancer. Cancer was mine. Is mine. Not hers.

When I first heard, I told my cancer friends, “Whatever. Everyone has cancer. It’s not a big deal. A little surgery, a little chemo, its fine. Just another one with the cancer. Whatever.” Sweet, wise Ashley, Ashley who’s adorable chemo curl is straightening back to her pre-cancer hair texture, looked at me and said, “OK well when you do wanna talk about it, we’re here.”

Our beautiful, squishy, sweet twin baby girls are due in three weeks. Like I imagined how the cancer could, I have imagined how that will go. We bring them home, we feed them Angela’s expressed breast milk, sometimes they wear matching clothes, they cry a lot and we give them baths, people come over and rock them and we eat chicken soup and drink iced tea because it’s really hot, and then the babies need to be fed again.

Will everyone descend? I hope so. People always say we will want time alone, we will want not to be bothered, they say we will want- they say we will want- they say we will want. They think they know what we need. Except they don’t, because they’re not us. I hate when people use their experiences to tell me what I need, instead of asking me what I need and respecting, knowing, even celebrating it will likely be different from what they needed even in the same scenario. Because you know what? I do not need people to stay away.

When I have a crisis, when something enormous happens, when there are big and exhausting and magical and trying and hopeful and heartbreaking things happening in my life, I want nothing more than to bring everyone close, and have people fill up all the sofa cushions in the living room, and to visit and laugh and be together. Sam always reminds me that when I had cancer, I needed people like crazy, and the house was always filled with friends. Even though I’d had a Bye Bye Boob Party only the night before, the evening before my mastectomy I needed peeps. So I called them. And they came. And we were together, even though they were about to cut my left tit off in twelve hours, and I was comforted.

Likewise, when we have our new babies, and things are crazy and beautiful and unexpected and hard, I will need my peeps.

It’s so confusing to me why you would want people to leave you alone when you have twin newborns. Based on every other experience I’ve had in my life, and based on the fact that I know my own heart pretty damn well, I know what I’ll need: and it’s not to be left alone. It’s all the people. The many dear ones. The family. The friends, together, tired, eating, laughing, being our selves. It’s a gringo thing, Sam explained, the-leave-the-new-family-alone thing. In Mexico, everyone descends. There is no space. No one asks the new parents if they need space to form a family bond. Space means your story echoes into the ethers and no one hears it, no one catches the tears or mirrors the laughter. No thank you. Everyone comes. Because its a big deal, and people come for big deals. They don’t leave you alone to figure it out all by yourselves.

So I wanted my mom to descend. To come. To hold the baby girls. To rock them to sleep. To organize my pantry. To mother me while I mothered them.

She was going to. But, cancer.

Sure, she’ll still come. But not for as long. Not as many days. She’ll still come, but she won’t be able to lift her arm up to get the glasses down from the top shelf, because of her recent surgeries. She’ll probably have to hurry back home, to get infused with cancer poisoning chemo. She might be between chemos, a few days here and there, days she will spend getting to know the side effects of chemo. Fucked much? Yes, yes indeed. She’ll come, but she won’t be able to mother me and Sammy and our baby girls as much as she would have, before cancer.

And also, what does it mean? What does it mean for my babies? Do we carry a gene they could not find? I tested negative for BRCA 1 and 2, and they found no gene mutations. They think my mom will test negative, too, but since more mutations have been found since I was tested, they will test me again if she is positive for anything. So, probably not a gene. So, then what?

It’s profoundly weird.

Were we both exposed to something toxic? What was it? We cannot think of anything. Will we ever know? Probably not.

It’s profoundly weird.

I’ve thought of changing the name of this blog, because I am kind of out of cancerland. I mean certainly, I still get check-up appointments and take hormone therapy every night before bed and schedule scans and make lists of questions for my doctors. But my hair is back, my scars are fading, and some days I don’t even think about cancer for the whole day. Other days, of course, I can’t stop thinking about it.

But clearly, even if the cancer is out of my body, we live in a world that is cancerland. The bees are dying- entire colonies, extinguished. The numbers are rising of people with cancer- my mom, sixteen people under forty at the young adult group the other evening, that friend of a friend’s cousin who someone was telling me about, my cancer friends’ dog.

This cancerland you inhabit, with me? Because we all live in it, cancerland. My initial response was, at least in that way, correct: everyone has cancer. It’s an epidemic. It’s everywhere. It’s so much that it’s not even shocking anymore.

And our cancerland, this one we all live in? It’s profoundly weird.

Some videos

I’ve made lots since I had cancer, but not published any on the blog, or elsewhere, for the most part. Here are two: one from this week, one from November, just after I was diagnosed.

where is the black & red, where are the sparkles and spikes?

I now inhabit a new body. I do not like it.

My left breast is hard as a rock. It is totally numb. It feels like someone stole my breast and left a stack of books in its place, shoved underneath my bruised skin. My body is angry, and the fury is evident in the pooling of fiery red liquid blood-pus in the drains* snaking out of the bandages. It seems like I produce more liquid each time we measure the liquid in these drains, like my body is getting more and more pissed off the less and codeine and morphine there is pulsing through my veins. Rightly so.

I can only wear pajamas. My healthy boob hangs on my torso, wishing for a bra, but there is no hope. The damage done to the right, the drains hanging out collecting the pooling body-anger in the form of reddened liquid, nerve damage that makes my skin feel as though someone is touching it with a fire-hot poker and singing it until it melts away, the fact that my rock-hard-book-boob is a quarter the size and three inches higher than the healthy breast— all of those makes a bra totally impossible. I hate it.

I was prepared you know. Prepared with button down shirts, easy to pull on over a mastectomy and pair with skinny jeans and cute flats for meetings and teaching. That is not going to work without a bra. All those cute artist-inspired, sleeves rolled up boyfriend buttons downs? Please. They allow the healthy boob and normal nipple to scream to the world, “I’m bra-less!” And they also allow the healthy boob to say, “And I’m pissed because I’m alone, and the matchy matchy boob that inhabited the space to my left is now small, hard, fake, and painful.” Excellent. It’s exactly how I wanted to greet the world, with this horrific boob situation that wears itself right front and center on my body.

At the bra store-regardless of which one- it’s all about the perfect rack. Now I can happily rail against the regime of control around women’s bodies. Anytime, folks. But it’s a knife in the heart that doesn’t stop twisting when all I see are perfect racks, matching racks, racks without cancer, and entire stores built on the existence of women with racks who will fit into bras meant to hug the perfect rack. So, right. There is a mastectomy store, a store for folks like me. But at the mastectomy bra store, it’s all about women who are old and who made a lot of money and who are now retired. Everything is seven times as much money. This is a place for old, wealthy women with breast cancer. Everything is breast cancer pink. It smells like old lady. And there are goddamn bows everywhere. I refuse to wear bows on my lingerie. I am not six. I will not wear bows and I will not wear breast cancer pink.  I know I had breast cancer and I don’t need a constant reminder that is breast cancer pink to hold my breasts inside my t-shirt: my library-book expander is enough of a reminder, thankyouverymuch. Yet again, a breast cancer space built for someone else, a space into which I cannot fit. This is not made for young women. Shocking.

They all say we (women who have had breast cancer) are “warriors” who “fight battles.” That’s fucked up in its own right, but even if it were true, where do I find the bras for said warriors? Warriors wear black and red and sparkles and spikes. I am pissed the fuck off. I want black and red and sparkles and spikes. I need some steel-toed boots but more importantly, I need some steel-toed bras. Why is the store for folks like me filled up with ribbons and bows? Where the eff are the spikes?

I hate all the options. I hate breast cancer. I hate pink. I hate bows on bras. I hate bras. I hate shirts that scream to the world, “you only have one nipple!” I hate stores made for old women with mastectomies because they don’t have spikes and sparkles and black and red for young women with mastectomies. I hate bra stores because they are premised on the non-existent perfect rack, which now definitely doesn’t exist, not even in a dream world, on my torso. I hate mastectomy. I hate surgery drains. I hate nerve-damage-pain. I hate tight skin. I hate bruises. I hate shopping for clothing to disguise a body I wish I didn’t have. Just, I hate.

 

***I have two drains that collect the fluid coming out of my surgical site. They are the size of lightbulbs, and they collect tons of fluid. Sammy measures the fluid every twelve hours, and I look away, because seeing them makes me nauseated. Soon, the surgeon or the nurse will decide that my body can handle the fluid without the drains, and then they will yank them from my body, and I won’t be walking around with these bulbs hanging from me anymore.

 

airport cancer

Did you know it was a thing? Airport cancer, I mean. It’s a thing. I’m in Salt Lake City, on a layover en route to San Diego. And I’ve met a total of three people because of/about/surrounding cancer.

First there was the lady. I parked myself at a restaurant bar and ordered what would turn out to be flavorless pasta and a glass of wine I couldn’t finish. As I flipped through my emails, I felt her hands on my back. You are beautiful. I want you to know you are stunning. Where are you in your treatment? She was in the know. I knew she knew in the visceral way only other people who have/had cancer know. I finished the chemo, and I have a mastectomy in two weeks. She nodded. And again. You are so beautiful. I had breast cancer. I did it all. You are going to be just fine. And then as soon as she appeared she was gone, though I felt her watchful eyes on my back until I finished my dinner, paid my bill, and turned to wave goodbye- and found her seat empty.

The bar was mostly empty. But this youngish white guy rolls in and picks the seat right next to me even though my suitcase that’s really too big to be a carry-on is taking up all the room between the two stools. He maneuvers around it. He makes small talk. He’s from San Diego. He was in Vancouver. We were on the earlier flight together and are on the flight to San Diego together, too. After twenty or so minutes of strangely persistent small-talk twists and turns, he tells me he’s a researcher. Another Ph.D.. One who works on hormone-sensitive cancers. Prostate. Ovarian. Breast. Bingo. Is that why he sat next to me? How strange we ended up sitting next to each other- I have breast cancer. Is it ER+ positive? Is it in your nodes? (It doesn’t feel invasive, this line of questioning, and I feel like I need to say that, because as I write it sounds invasive.) But he knew what he was talking about. You’re going to be fine. No markers in your blood, nothing in your nodes? Best case scenario. He likes my young breast cancer cultural politics research plan. He knows what #bcsm stands for. He’s so clearly in the know. When you’re that in the know, the questions are informative. When you’re that in the know, you know how to cut the bullshit, talk particulars, and be clear and hopeful about the outcome. We talk more. He tells me about a receptor-chemo he is working on for metastatic breast cancer, and about a trial to shut down and eliminate the ER receptors (or something like that). I am so relieved to know this person is working on breast cancer research behind the scenes.

Finally, I board the plane. There were no empty seats, so I am stuck in 22C even though I tried to play the cancer-card and get moved, as I did on the last flight, to an empty row or even better, an empty first class row. And as the last few people fill up the seats, a boy in his late teens approaches. Look, he says, I really want to sit with my girlfriend. Want to move to first class and take my seat? Who are you, I think silently, a lanky, pimply twenty year old with a first class seat? OK, I nod. I’ll do it. Wouldn’t you? The flight attendant moves my suitcase. I move up to the third row. Mr. Tall-Lanky-Pimply-Boy-In-First-Class left a note on the seat. You look like you need this seat more than me. What? This is so weird. But I do. And I have this seat now. So OK. Maybe he knew I had cancer. Maybe the note wasn’t even for me. Maybe it was a random act of kindness I suppose I could ask, but I kind of like it this way, not knowing, magical anonymity.

What is this dreamworld I’m living in? Oh, I forgot, it’s not a dream-world. It’s America (as my friend Ariana always calls the US). So this is what its like to have cancer in America. I didn’t know. This many people would have never spoken to me in Canada, even if I walked around bald. Even in yoga, the many strangers I practice work don’t say a word, even though they watch my eyebrows melt off and see me paint them back on after the grand sweat and stretch.

America. As soon as I cross the border, each and every time, it feels different. The city is irrelevant. Doesn’t matter if I fly into NYC or drive into Bellingham or land in Oakland or pass through Salt Lake City. It’s like a release of breath I didn’t know I was holding. It’s easier. The servings of onion rings are bigger. I can understand the second language around me- and it’s Spanish. More people wear flip flops. No one says sorry in that Canadian twang. It’s home.

But lately I’ve disavowed this place I’ve called home. I’ve announced I never want to return. I’ve proclaimed gratefulness at being treated in the Canadian system. I’ve waxed horror for my American young breast cancer afflicted peers. Tonight makes me think again.

Americans get right up in your face. The old lady put her hand on my back and didn’t take it off. The flight attendant inquired about the surgery date. The guy asked questions I felt I needed to defend for being invasive when they didn’t feel that way (have I become entirely aculturated, Canada?). Americans care in their abrasive way, and while in Canada people stare but stay silent about my baldness, here even a wig invites conversation, comraderie, questions. Certainly, it also invites too much curiousity at times, too much in your face grittiness, too much. But I gotta say, it’s a breath of fresh air, too. Or better articulated, it’s a release of breath I didn’t know I was holding.

I’ve learned lately, over and over and over again, that its always better to do something, say something, respond, try, ask, reach out and f*ck it up wildly than do nothing, retreat, be tentative for fear of f*cking it up. The person to whom you’re offering can always turn you down or simply not respond. That should be absolutely respected each and every time without question- it’s called consent. But that’s why you ASK. That’s why you REACH OUT. That’s why you DO SOMETHING. It’s an invitation, a provocation, a caring, a smile. It doesn’t have to be returned, accepted, responded to. I’d rather throw it all into the universe, shower the people I care about with feeling, and let them decide what threads to weave into our friendship. Better to offer a hundred different yarn colors than only blue or yellow or worse yet, none at all. And yet— that’s just what the tons of people have done. They’ve offered nothing. They’ve retreated, rolling up their ball of yarn and running.

I think it’s classed, cultural. The Canada I know is enmeshed with British reserve. There’s a upper class value haunting privacy. Privacy, keeping to oneself, discussing body-matters, health-matters, relationship-matters in whispered phone conversations and presenting a facade of collected presence- it’s something you perform to show you belong to the middle-upper or upper class. It’s proper. That plays out in Canada, in the vein of British reserve. And as soon as I cross the border to America, there’s a brashness, a willingness to engage, a rawness that can horribly wrong and that can be horribly endearing. I’m the first one, almost always, to tell you effed up the States can be. But man, tonight I was reminded, as I meandered through the very American Salt Lake City airport, that there’s something awesome about Americans, that there’s a reason I let out the held-breath when I arrive here, and a reason that I can identify with a wink of the eye as American. Maybe there is actually reason to be hopeful.

Oh America. You’re so weird.

 

Thoughts on Lisa Adams & the Media Flurry

So by now, you have probably heard about this whole Lisa Adams debate. Basically, two married journalists, Emma Keller and her hubby Bill Keller- wrote about Lisa’s awe-inspiring twitter presence (and related blog) with regard to her stage IV breast cancer. Both journalists were critical of Lisa, calling her writing about her cancer and about dying “TMI,” being generally totally tone-deaf, and in my opinion, absolutely missing the point of social media and why someone with a life-threatening illness, indeed, someone with a terminal diagnosis, might put herself and her experience out there for others to witness. I won’t rehearse these amazing critiques, responses, and thoughts on Lisa and her writing, but here are a few great pieces about what has gone down.

The initial articles shame this woman who has boldly, humbly shared her experience of dying. As if her metastatic breast cancer was a dirty, dirty secret she should hide. As if she did something to cause her breast cancer. As if she’s incapable of making her own decisions about what to share in public digital spaces. As if she were a child to be reprimanded for sharing her hurt. As if rupturing the picture-perfect personas that populate digital publics but that don’t really reflect life is a horrendous transgression. As if we were not all responsible for the cancer invading her body, precisely because we’ve not yet launched a massive revolution contra the insanely toxic capitalist invasion of our bodies, our earth, our world.

I was floored to discover Emma Keller, the initial writer, herself had breast cancer. How on earth…. I thought, and then, suddenly, it all made sense. She’s probably deathly afraid of a recurrence. Simply terrified. And there is Lisa Adams, blogging and tweeting away, the embodiment of exactly what she hopes to never be. She probably wants to run in the other direction, forget it ever happened, refuse the possibility. It would have been better if she just turned off her twitter feed.

The thing is, we live in comfortable la-la-land about breast cancer. Everything is happy-happy pink, people call themselves “survivors” (I just can’t get on board at the moment- it seems to imply that other people had to die so the “survivor” could survive those other, dead people. Can’t do it.), and we have celebratory walk-run-things in which we gather girlfriends, wave pom-poms, and adorn ourselves in clothing, makeup, and all kinds of decorations that come from the companies that produce the very toxins linked to breast cancer. It’s a la-la-land.

No one wants to know about the deaths, no one wants to hear about the treatments not working, no one wants to stare down the statistics and imagine themselves on the wrong side, no one wants to sit and listen to what it’s actually like, pom-poms and survivors aside. Lisa Adam’s tweeting ruptures the la-la-land. It’s public. It’s not pink. There’s no pom-poms, because, in fact, she’s dying. It’s not exactly something you can cheer on, there’s no “surviving.”

You might not hear these stories. I hear them everyday from other young women with breast cancer, from women with breast cancer in all different stages. I hear about, and feel the constant pressure to smile and say its “getting better” and that we’re “making it through.” I hear about, and sense, feeling alone in the midst of a crowded room, even when there are people bringing food and texting hearts and offering to be appointment assistants. I hear about and tango with the fear, the sadness, the horror that is not pictured anywhere, not reflected at all, except in the eyes of the other young women I know, who speak the language of chemo and hormone status and nausea.

Maybe the first writer, Emma, and her husband desperately need to convince themselves that what is happening to Lisa won’t happen to Emma.

The other day, I met a young woman with metastatic breast cancer. She’s the first person I’ve met who has metastatic breast cancer. We both attended a yoga class for young adults with cancer. She’s just like me. We were born the same year. She has a job and a fiance and dreams. And metastatic breast cancer.

I’m certain my eyes were wide. Inside, I gasped. My stomach churned. I desperately wanted to believe it wasn’t true, couldn’t be, impossible. I hoped it was a garish, ugly cancer joke. I would have done anything to make it not real, this young woman, standing in front of me, chatting about hormone status and chemo hats and oh- metastatic breast cancer. Anything. But there she was, with me, on the same road as me, attending the same yoga class as me. Nothing is permanent. Not her, not me, not the yoga class we attended. And so we sat and talked in that comfortable room with the high ceilings and drank tea, and there was nowhere to go.

I think Lisa Adam’s social media presence and the flurry around it should be a wake-up call. I think it should jar us out of the la-la land. I think it should make us think what might happen if we took her seriously, if we stared the stats in the face, if we got really up close and personal with death.

I’m afraid, though, that like so often on social media, the flurry will pass, and we will move on because we liked, shared, commented, participated. And Lisa Adams will still have metastatic breast cancer, and chemotherapy still won’t work very well for lots of people, and I will keep meeting young women with cancer, and some of them will have metastatic breast cancer. I don’t want it to pass. I want the flurry to come with us into the future. I want the flurry to grow. I want the flurry to be angry. I want the flurry to scream and shout and writhe and be black and ugly and angry. I don’t want it to be just a flurry of feeling. I want it to be a storm that doesn’t end until we actually deal with breast cancer. And all the other cancers. Then the flurry can die down, when there is no more cancer.

learning to do cancer from fb

So by now, you’ve probably seen this whole pre-mastectomy dance party video and the equally awesome responses by this woman’s friends/family/colleagues who made videos dancing themselves for her recovery. It’s kind of everywhere on Facebook. It’s kind of awesome.

I kind of don’t know what to think. On the one hand, OMG, this is SO COOL and HOW do I get my medical team to be such rock-stars like she did?!?!? And also, would MY friends make silly videos like that, too? I mean not would they exactly do what these folks did, but if I asked them to do something, would they? Am I even cool enough to think of something that amazing? Am I cool enough to party out with breast cancer instead of freaking out?

And what does it mean that this is getting passed around? She- and everyone who participated- are incredible, playful, creative, brave. But those of us posting this to our FB feed and emailing it and participating in its viral life… why? Are we so obsessed with hearing happy stories of awesome about cancer and women with cancer that we need to frantically share this so everyone knows, this is how to be with cancer? That actually, if you just try hard enough, you can think of something awesome and do it, and everyone else will follow suit, and it will be awesome and obviously, you will beat cancer? I mean, I love this so much. And I love that she did this. I just think the hyper-circulation and viral life of this pre-mastectomy video is a little unnerving. I think it’s so unnerving because the quantity of times it has shown itself on my Facebook feed seems to scream right at me, THIS IS HOW TO DO CANCER.

I’m trying to figure out how to do cancer. This woman-doctor shows us one way, a way that everyone will clap for and love and share and make viral. I know particular kinds of stories are intelligible, and others are not. Oh gawd, I’m about to go all Ranciere and the distribution of the sensible on breast cancer. I’ll spare you. But really, why this story? Why this white doctor woman with great dance moves and a big pre- mastectomy smile? She’s great. But why’d we pick her to make viral? To be the example, to spread hope, to be non-threatening and totally lovable, to beat something by dancing?

On the other hand, there’s another how to do cancer text widely passed around on FB right now. This one is much sadder. A young woman with a beer sits on a porch with her lover. They drink. And then, it seems, she gets diagnosed with breast cancer. What follows are a series of images he took of her, resting, shaving her head, pushing the morphine button, visiting with friends. And then she is gone. Her bed empty, and the rain falling on the windshield of the car. This one is heart wrenching. I know, too, this one is shared because I don’t want to be her. No one does. No one wants me to be her, either.

I still don’t know the stage of my cancer. I’m clinging instead, to the fact that its estrogen +, which means it can be treated for a long time by blocking estrogen production. But the really sobering thing, is that though I can cling to the idea of that estrogen drug, I could actually be the second woman. The woman who’s husband chronicled her illness, and her eventual death. We could all be that woman.

This one doesn’t speak to me like the mastectomy dance. The mastectomy dance shows me how to be. This one warns me of what I could be. It is a deep, dark warning. It is the warning that assures the other 5,999 people in my age group that I’ve taken the bullet for all 6,000 of us, and so they can look. They can look in horror, and then look away, look towards the dancing video. Because that is what we want, even though we never know if that is what we have.

And then of course, there’s the formidable dissertation supervisor who, a researcher working at the intersection of queer/cancer/mobility/media never fails to post something that’s neither of these narratives. It’s an interview with Lochlann Jain, who was diagnosed with cancer at 36. She writes now, researches about cancer. She discusses the confounds, the complexities, the paradoxes, the slippages. Sure, Lochlann Jain is an academic. She speaks a language that sounds good to me. It sounds familiar. It feels thoughtful and right. She even talks about feeling like people think she is aggressive for not covering her bald head. It’s a medium I understand, thoughtful, critical words woven into a larger argument that speaks both to me, as another young woman diagnosed with breast cancer, and also, it’s both personal and theoretical and critical. I want to learn how to do cancer like her, not like the other two. But it’s not viral. Too bad for that!