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.

To you, she who was just diagnosed.

To you, she who was just diagnosed.

First of all, I am angry. I am livid you are joining me here. I am pissed off people are telling you to be positive and hopeful. I am astounded they continue to tell you you will be OK, when really, we don’t know if you’re going to be OK and mostly, what you need is for them to acknowledge you’re in the most unstable, unknown, unpredictable, absolutely terrifying land ever.

Second of all, I love you. Sure, we haven’t spoken in years. Maybe we never even really talked much back when we shared the same space. Maybe we were besties. Maybe our lockers were near each other. Maybe we knew someone in common. I don’t care. Somehow we knew each other. Somehow, you reached out. Somehow, we connected. And I know it wasn’t easy, to reach out, to connect, to ask for help and support and love. For that impulse you had, that tiny glimmer of knowledge you had that maybe your harrowing cancer news would be a teeny tiny bit less harrowing if you reached out, for that enormous risk you took in contacting me, I am eternally thankful.  I believe this earth holds a wisdom deep inside, and I think that you accessed our earths’ wisdom when you reached out, and I am glad you did. Glad isn’t even the word. I am heartened. I am hopeful. I cannot imagine you not having connected. We need each other. We do. Badly.

I’ve learned nothing from breast cancer, but from my cancer friends, I have learned we have to stick together. Together with a young adult here and there, I made it through treatment and I’m trying to make it through the aftermath. We lost our hair together, we cried about our fertility together, we lamented being the only young ones, together. Then there were the friends who I met who could relate, because they were diagnosed before me. There was one in particular, and she was steady. She was still vulnerable and she was still pissed off but she was real, she was present and she was able to show me what could be. It was different than getting it because you were losing your hair at the same time. And it was comforting. I hope I can be like that friend who was diagnosed before me, to you who was just diagnosed. I hope I can acknowledge and never diminish the wild fear, the never ending tears, the incredible misunderstanding.

So you, she who was just diagnosed. Barely 48 hours ago, you were diagnosed.

When you messaged me on Facebook, time stopped. Goosebumps rose. Tears filled my eyes, and my blood pulsed with anger. My heart broke in a million pieces. I had an incredible urge to hold you tighter than tight, to never let you go, to keep you safe and warm inside my arms.  All I could do was call.

Your voice was heavy with fear. In each question, each comment, each admission, I heard myself. I heard my own quavering voice, asking about radiation, mastectomy, hair loss, telling family. Each time another part of the story unfolded, I remembered the familiar creases in the fabric, the familiar not knowing, the familiar grasping at anything, something, anything that made sense.

I’m so glad you messaged me.

To you who was just diagnosed, I wanted to tell you. Advocate for yourself. Preserve your fertility. Ask a million questions. Stop googling. Stop google-scholar-ing. Take the ativan they offer. Stop researching. Trust your oncologist. Call the people you know, the ones who you aren’t sure about, but who maybe had something like this. You need a tribe. Don’t be ashamed to text like mad. Call all the time. Stop googling. Hydrate. Stop researching. Hydrate. Trust your oncologist. Ask questions. Reach out to any person who looks youngish. They are your tribe. We are your tribe.

I am so sorry.

People will say crazy things. They will bring you green powders and tell you to be positive. Fuck them.

People will come out of the woodwork. They will bring you dinners and movies. Love them.

Tell whoever you want. Don’t tell the rest.

Hide under the covers. Ignore phone calls. Only eat ice cream. Watch re-runs of the worst TV shows from your childhood.

Wear cowgirl boots, if they make you feel powerful.

Tell. Don’t tell. Tell part. Don’t tell the rest. You get to decide.

Find the colours the are comforting, and build them into your life. For me, it was aqua and warm, knit blankets.

Get a naturopath, if you like. Listen to their advice, sometimes.

Watch a lot of movies. Distract yourself. Distract, distract, distract.

Color. Draw. Make friendships bracelets.

Go to yoga. Lay out of all the postures, because, chemo. Go anyway.

Crawl under the blankets and cry. Demand your doctors tell you something about their lives before you show them your tits.

It’s a decision for you, and only you, the mastectomy or lumpectomy. Trust yourself. Its a decision, only for you.

Reach out. Keep reaching out. You already did it. It’s so important. It’s so hard. Keep doing it.

It’s not positive. It’s not pink. It’s not happy. It’s cancer. You don’t have to be any of those things. Promise. Fuck them.

So to you, she who was just diagnosed. Call me. I’m here. I want to shake you and tell you, I’m here. You’re taking all the space up in my heart and I can’t stop thinking of you, so please call, and please text. Don’t not contact because you think its too much. It’s too much to have breast cancer when you’re this old. It’s too much to be the only young one. It’s too much to consider mastectomy. It’s too much when every single person tells you to be positive and it’s too much when everyone tell you you’ll be fine. It’s too much to wait for more information. It’s all so fucking much, and it’s not too much to call or text. Promise.

To who, she who was just diagnosed. I’m here. All ways, and always.

Love you.

Me.

Email Anytime Relief

Email ANYTIME, she wrote. Her caps, not mine. Cue, giant sigh of relief.

In the past few weeks, cancer has had its way with me. My body has been angry, flaring up in hives and sending shooting pain through my chest bone. I’ve seen doctors and had tests and gotten results. It’s creepy-crawly. It’s not a place I like to be, this space of not knowing, of wondering if I’m gonna be OK, of weird and random and unexplained side effects.

And my oncologist is on sabbatical. So emailed her. Come in tomorrow, she emailed back, and in a nano-second, the cancer agency was calling to set up an appointment for me. I saw another oncologist. He opened the door without knocking, and he opened my gown without asking. My eyebrows raised. He was wearing batman earrings, but he was no super hero. He did not look old enough to have the years of knowledge Dr. G. carries with her, the knowledge that shapes her decisions, the knowledge that allows her to answer questions firmly and carefully and completely so that I feel taken care of and visible. One look at my reddened skin, mottled with tiny dots, and he assured me it had nothing to do with cancer. Bullshit. Also, since these hives are terrifying me at least acknowledge that they look scary, that they look angry, that they look abnormal. Acknowledge that I’m right to be terrified. Those hives covered only the fake tit, only the skin covering the implant, only the breast that was invaded by cells dividing without control. Those hives had everything to do with my cancer.

Way to build trust, Dr. Batman Earrings. I was skeptical from the moment you walked in the room, and you gave me very few reasons to trust you. You don’t get to fling open doors and blue hospital gowns like you own the cancer agency or worse, like you know my body better than me. Dr. Batman Earrings has got to work on establishing presence, holding space, moving the air so that there’s room for me to know that he is going to make sure this works, that he is going to make sure I’m cured, that he is going to make sure it’s OK.

You don’t know me. You glanced at a bunch of stats, you calculated risk, you flipped through a chart filled with words of warning and prescriptions for curing my cancer. You don’t know me. You were surprised at me. Surprised I didn’t act like I liked you from the second you walked in the door. But you gave me no reason to. I’m skeptical of your nose ring and your earrings and your hoodie. I’m wary of your male privilege. I’m not about to trust you just because you are a doctor. I’m a doctor too, you know. You don’t really know me.

If you really knew me, if you took even a second to really know me, you would know I spent hours debating whether I should call you about these stupid hives, and hours reading about what can cause hives or rash, and about inflammatory breast cancer. You would know I just finished my Ph.D. and that this cancer has been a harrowing experience. You would know the chemo dulled the vibrant orange-y strawberry that was my hair, and that I have a lot of different appointment buddies. You would know that fertility has been a major concern and that I feel so out of place amid the older women.

But you don’t know me. You only saw my chart. That’s not me. My body can’t be captured in those numbers, those graphs, those recommendations. That’s not me.

As the scans and tests mounted, I finally decided to email Dr. G.. Multiple paragraphs, each one dedicated to one of the strange occurrences. A lot of questions, about the hormone therapy Dr. Batman Earrings wanted me to switch to immediately.  About the sternum pain and the X-ray, the risk of radiation from X-ray and the power of the tests to come. I tried not to sound too neurotic, I hoped the lines were not too laden with anxiety. But they were. I worried I was crossing a boundary, that I should be able to let her take her sabbatical without emails from patients, that I should be happy enough that Dr. Batman Earrings saw me the next day after Dr. G. sent an email, that I should be able to deal with whatever oncologist, because really, they’re all oncologists and what’s the difference?

But I emailed anyway. And she responded. At 2am.

And her response was such a relief. Oh thank goodness. Dr. G answered all the questions, in detail, carefully and kindly. She was reassuring and clear and consistent in her answers. There’s no room for uncertainty between cancer doctor and cancer patient, and she is not one to waffle. You can trust clear structure, you can trust certain not-waffling, you can trust her. She’s probably the only human on planet Earth who’s assessment of my being ok actually has the power to make me feel like I’m going to be ok. And she wasn’t wearing batman earrings, even though her emails came at 2am and again at 5am. She must never sleep. I don’t care. I am so relieved. Anytime, you can email me, she said. Oh relief.

I warmed up to Dr. Batman Earrings. He seems competent enough. They’re all competent though- somehow, they got through med school and an elite specialty. What I need is kind. He seems kind enough, but I still feel better about my own oncologist, the one who saw me through the chemo and who made sure I had time to do fertility treatments and who took my concerns seriously.

I sort of warmed to Dr. Batman Earrings. And if I can have Dr. G. over email, too, I can deal. I can stay warmish, if I know she’ll be back at summers’ end. I’ll be glad when Dr.G. is back, and until then, I’ll be here, rolling my eyes at Dr. Batman Earrings, and reminding him he doesn’t know me. He’s competent and kind and I can deal, but he doesn’t know me. And I won’t let him forget it. He doesn’t know me. Not really. Not yet.

the beginning of the cancerversaries

On August 28, 2013, I had an ultrasound. The tech was so unimpressed with the lump that photo (1)she wouldn’t even invite the radiologist in. She did, though go out and speak to him, at which point I snapped this picture. For the next many weeks, I obsessed over this photo. I compared it to photos of cancer, of fibroadenoma, of benign lump in young women with the help of Dr. Google and her cousin, Dr. Google Scholar. I sent it to people who I deemed to have excellent googling skills-you know who you are- and we compared notes.

A few days ago, it was August 28, 2014. The day that marked the one year anniversary of the beginning of this massive mess, the one year point from when this picture took up residence in my phone and in that place in my brain in charge of anxious googling. photo (2)This time, though, it was different. On the 2014 occasion of August 28th, there were no ultrasounds. There was a phone call about a post-doc, and an art-night with a palette full of acrylics. Sammy made boat paintings, I started working again on the famed breast casts, though I left the “nice” one untouched. What a difference 365 days makes, and yet, what not a difference.

Still, images of breasts that bear only a passing relation to what you see underneath a sweater dominate the visuals. Images, and imaginings, of what is inside have morphed from the technological rendition of cells beneath my skin to the artistic rendition that so many have molded together in memory of what once was. Neither the lump in the ultra sound nor the left breast memorialized in the breast cast remain in the world. They are but mere traces.

On the left breast, I glued words from pathology reports, from medical notes, from surgery directions. On the right, I glued lines from random pages of my dissertation, but you bet I chose which lines. And then came the heart. Pumping blood, veins pulsing, over top, even though, in spite of the medical jargon, the hospital terror, the doctors’ reign. It’s not done yet, and neither is this season of cancerverseries. The calendar is filled with cancerversaries between now and the end of the year: the first biopsy, the first lumpectomy, the waiting, the diagnosis, the fertility, the first chemo….

And I, smart woman that I am, timed it so well. In case I should ever forget about cancer, we’re on the cusp of Pinktober, the breast cancer month, and the decorations are already being hung. They won’t let me forget! People are asking about the CIBC Run For The Cure, I am rolling my eyes about the number of breast cancer flags bordering the Cambie Street Bridge, and the bank employees have all donned little pink ribbons next to their name-tags. More on that, soon. For now, I should make some coffee and hunker down with my job letter, and the color-coded excel document of jobs and post-docs and opportunities and to-do lists. Maybe the academic job market will let me forget.

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.

communication

Communication. What a loaded word. We think it means conversations, feedback, truth-telling, pillow talk, peer support. We draw on our mother-tongues and our second languages, our eyes and our bodies and our gestures, our desire to be understood and our tendency to shelter the most tender worries.

Enter cancer, and it gets even more complicated. Did you know that young couples who deal with cancer have a much higher tendency to head toward cancer-induced break-ups? I mean, its no wonder. After all, who prepares young couples to communicate and navigate life challenges? And what kind of challenge have two young people in love ever faced that might parallel cancer? Right, none. I mean, take me and Sammy: we were together for many years- nearly a decade, during which time we built a shit-ton of communication skills, but we still got married and then got cancer. Well, not exactly. We got married and found The Lump within six weeks of each other. Because my path to cancer diagnosis was marred with multiple misdiagnoses (the case for very many young adults) that included assurances of “it’s definitely not cancer” at physical exam, ultrasound, mammogram and biopsy (I should quote the radiologist who said, “I’d fall out of my chair if this was cancer.” I wonder if she fell out of her chair), the time lapse between wedding and cancer diagnosis was sixteen weeks and two days, exactly. But remember, ten weeks and two days of those sixteen weeks were spent wondering why no one was taking us seriously and buffing up on research so as to convince our doctors we needed more investigation, more tests, and more knowledge in the face of what only we thought (at that point) seemed like a misdiagnosis, or at least, one that needed more back-up.

Needless to say, we spent most of the first year of our marriage sifting through breast cancer research, treatment, and side effects. We dealt with chemo and life-or-death decisions on a daily basis. As we wrote wedding thank you notes, we had conversations about Sammy being a widow and about how far we were willing to go to prolong life and about how much ice cream we would eat in the face of a terminal diagnosis. We sorted wedding pictures as the chemotherapy nurse looked on and inquired about bridesmaid color schemes. We picked up my cleaned wedding dress on the way home from my first oncology appointment, and on the ride home we debated the costs of naturopathic treatment.

And we did it all in two languages, in the gray space where Spanish and English slip into each other, in the space where the words tumble together and forget which mother tongue they came from. And we still love each other. So I think we are exceptionally qualified to say a little something about communication. I think our communication skills saved us. I think our two-language vocabularly, our two-language sensibility, our ability to slip between our two languages and to make new words from the best of both languages saved us. I don’t think, though, that you need two languages to survive. I just think we had exceptionally creative language skills because of our two languages. There’s other ways to build exceptionally creative language skills.

You see, when the person you co-habitate with is both the other half of your orange (mi media naranja!) and your better half (mi mejor lado!) there’s two ways to think about who you are. All orange-halves need other orange-halves to be orange-wholes, and what if you don’t want to give the other half credit for being better? What if the other half is in fact, being your worst half at the moment? Then it’s damn good you have the metaphors of another language to draw on! In all seriousness, really. Maybe you’re not so worried about this language and way of thinking about your orange half or your better or worse half, but it’s just an example. Extrapolate. In a much tenser, more radical moment, we’ve got two languages, two sets of metaphors, two cultural reference points.

And of course. Because there are two sets of metaphors, two languages, two cultural reference points, we are used to complete and total misunderstanding. Once, when we were driving over the mountains from Sam’s folks home on the coast of Veracruz to Xalapa, where we lived, I sat in the front seat. Sam’s mother and cousin sat in the back, and Sam drove. The fog was atrocious, the kind that requires you to open your door to make sure you’re driving along the dotted yellow line, but there’s not yellow line dotting the road over the mountains from the coast to Xalapa. And so Sam, driving through the dense, dense, fog, said to me, “Hechame aguas!” as we backed up on the empty road. Now, “Hechame aguas” means “Throw water on me” literally. And so I started looking around for a water bottle and asked why he wanted to be all wet when we had a two hour drive ahead. Clearly, I was totally misunderstanding! “Hechame aguas” was a call for me to help him navigate the road, to be an extra set of eyes, to watch out for him, with him. After some laughter that produced tears and belly-aches, we all realized I had just mistaken “hechame aguas” to mean something it didn’t, and Sammy had assumed I knew how to interpret the cultural reference. That, folks, is pretty much the everyday reality of life with someone who doesn’t share your mother tongue or country of citizenship.

But we learned. We learned to anticipate when references would take on new meaning, we learned to laugh at jokes that lose meaning when translated because we could quickly translate them back and grasp the meaning, we learned to re-explain, re-visit, and to revel in mis/understanding, whether the conversation was about throwing water at the car driver or what to make for dinner or how we wanted to die. I think that approaching each conversation knowing that it could quickly slide down the slippery slope of misunderstanding- and being able to blame mis/understanding on language- has given us the tools to communicate like only other bilingual couples know. These tools foreground, always, and humorously, the real threat of radical misinterpretation. And so we know we must re-explain. We must tell stories. We must use verbs from the other language. We must let our tongues get used to telling in the other language.  We must draw parallels to explain ourselves, and use metaphors grounded in a culture we had never heard of us small children. We are constantly translating, thinking about how words sound in another language, noting how meaning shifts changes, deciding when to shift into English or Spanish or Spanglish. So we learned. We learned to communicate knowing full-well how often we would misinterpret, and we learned to delight in the un/knowing between languages, to find magic in making new words and finding feelings only one language had a word to articulate. We learned to communicate.

And so when cancer came a-knocking, we continued down the same path. We used the same creative assemblage of language and feeling and body movements. We quickly discovered that if the terrain of misunderstanding in our everyday was slippery, then the terrain of cancer was like the side of a grassy, muddy mountain topped with mounds of warm, slippery butter. We knew we were bound to mis/understand.

I think this is key. We knew we would misunderstand.

How often is it, that we pout in the corner or cut of a friendship or cry in the bathroom because we were misunderstood? Misunderstanding, and especially misunderstanding that feigns understanding hurts. Like bad. Real bad. Isn’t that why I recoil at the platitudes people offer in the face of cancer like “Be positive?” “Be positive” grinds at me because it denies my experience that is everything but positive. “Be positive” totally and completely misunderstands what I am feeling. On the other hand, acknowledgement of misunderstanding in the face of total confusion is comforting, quieting. It screams, I cannot understand, and I want to, but I cannot, and these languages we have at our disposal to make understanding possible are as inadequate as the mammogram that read my cancerous lump as naught. That acknowledgement is not insignificant- it’s just the opposite. It’s monumental. It calms me so much to know someone who cannot know is not trying to steal away and warp and re/present oddly, off-handedly my testimony, my experience. Because the key feature of that experience? It’s mine. And I want you to pay heed to that, respect that, handle it carefully. I’d rather misunderstanding than appropriation of my experience touted as “understanding.”

So I urge you to delve into mis/understanding. To stare at the eyeballs of people you love and know that as hard as you stare, as deeply as you sink into their experience, understanding is just a slippery, wet, muddy slope doused in warm butter. It’s impossible to climb up, and so instead we might revel in the slipper slide down. And we can talk about it, and throw words into the air, and grab what we can of the others’ words, and we can use them to ground ourselves for a moment, like grabbing onto tufts of grass peeping out hear and there, but soon enough the roots of those tufts of grass will pull from the muddy ground, and again we will be sliding.

It’s not to say that understanding is hopeless, or that we shouldn’t spend the moments before our eyes close fighting to stay awake and understand our loved ones’ pillow talk. It’s not to say we can’t listen to people different than us, and it’s not to diminish the radical act of witnessing the lives and experiences of those around us. It’s not to say we can’t be jarred out of boredom by stories we’ve never heard before, and it’s not to say we can’t learn to love people who’s lived experiences of the world don’t overlap with our own even a little.

Mostly, it’s to say we can love each other when we don’t understand. It’s to say there’s a certain freedom and a deep (ondo is the word I really wanted to use, because it sounds more like the color of the bottom few inches of the center of a lake, just before you get to the sand) respect in witnessing without trying to stand in the others’ shoes, a respect in standing in your own shoes and knowing you cannot ever stand in someone else’s shoes. It’s to say how cool, to stop trying to understand, and simply start listening. It’s to say, what power in listening, without needing to understand experience by appropriating it, but rather, what power in listening while only listening, while only feeling, while only being and knowing we might be sliding down the slope of mis/understanding.

So that’s what we do, in our own little nudo de amor, when we talk about cancer. I don’t understand what its like to watch your media naranja get cancer, fight chemo, cry because she misses yoga, or use up all the printer ink on breast cancer articles. He doesn’t understand what its like to feel incensed because all the women in my exercise study are two decades older and tell me they’re “young at heart,” and he doesn’t understand what its like to wake up in terror that I forgot to take a medication, or to be so divorced from the brick on my chest I can’t really call it my own (fake) breast. But that is ok, because we got a nudo de amor, and inside of it, we can throw rational understanding to the wind and instead, revel together in the slippery slide of mis/understanding.

on telling

I’ve been thinking a lot lately about telling.

Telling people I have cancer.
Saying those words, letting them fall onto others’ ears and into others’ inboxes. How weird it is to say, “I have breast cancer,” how strange those words sound as they roll around in my mouth.

There’s really no way to soften it. No way to tell it easier, to tell slowly, to only tell a little. At some point, you kind of just have to say “i have cancer,” and let what will happen.

Mostly people are insanely nice, so kind, so full of love and worry and concern. You guys offer to take me to lunch and to do whatever I need (though I don’t know what that is right now), and you give me your sleeping pills and say you’ll teach me how to smoke weed (I’ve never been very good at it or liked it very much) and you bring over ice cream and text like crazy and tell me we’ll get through this, and that we’ll just deal with what we have to deal with. The we is really good.

It’s still anxiety producing, though, telling. It breaks the surface chatter, silences the laughter about nothingness, produces black humor about cancer and death.

There’s not much to be done. The only thing I want to be done is for a fairy or a witch or a genie to appear and to make it go away, to wave a magic wand and be shaken awake from this nightmare. (certainly, soon enough there will be actual things I need, actual support people near by can provide, like after my surgery and during chemo). The nightmare feels like being stuck in the dark swimming pool waters of a big pool after the covers have been pulled. Truth be told, I don’t know what that feels like, but I imagine it feels like this. As a child, I used to be so afraid of getting stuck under there. Probably, that was just the fear instilled by endless coaches warning us not to play under the tarps, where it is dark and black and easy to get confused about which way is up, and hard to break the seal between water and tarp, and let air in.

Telling is like admitting someone got stuck under the tarp, we weren’t careful enough when we pulled it over the pool at nights end and there’s a feeling of horror and dread, knowing that someone (could have) gotten under the tarp, stuck there, overnight. That’s how I think it is for the people I tell. I’m the one under the tarp, the one no one wants to be, the one who didn’t kick fast enough or scream loud enough when the tarp was pulled.

I’ve told most people now. College friends. AMIGOS friends. PhD friends. “Home” friends. I only had to tell my Mom, and she told the rest of the family.

Now, those other people. The ones you run into at the grocery store or yoga, who ask, “how are you?” These everyday conversations do not have the capacity to handle “I have cancer.” There’s not enough room. What would you say, to someone who said that to you as you dropped something off at the postal office? Nothing, you can’t. There’s no room. Since there’s no room for “I have cancer,” I have to tell some other version of my reality. Everything else feels like a lie, but mostly, “I’m great, thanks!” feels like a big, giant, charade.

Then there’s the people who I see all the time, and who are in my lives for various reasons. Fellow young academics who wonder why I’m dropping out of the conference panel we were putting together, when I normally organize these things. Others who would never wonder, never imagine something so horrific, like professional contacts and the girl who paints my toenails and the hundreds of AMIGOS youth I’ve mentored over the years. Then there’s the people who will soon know, but who I’d rather not tell- academics at UBC, other students who I see around, yoga teachers who’s classes I frequent, the people in my building. They’ll all know at some point. Cancer is news, cancer is news that spreads. And soon enough, it will be wildly public. My bald head will be a public signifier. But until then, telling is such an odd way to be in relationship to other people, to the world, to myself.