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.

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othering me: i can’t fold my body that way

Ouch, she said. It’s the bones, of course. It’s not being able to move normally. It’s aching from deep inside the marrow. It’s a tremendous pain that begins as soon as I sit down, lay down, am still. It creeps through my ankles and hips and ribs and femurs and spine. And so I walk. I pace. I go to yoga and kickboxing and the gym. I ride my bike. I bounce on my toes at my standing desk while I type.

I’ve never had chronic pain before this. Sure, my back hurts sometimes from sitting in front of my computer writing, and my ankles are weak and perpetually sprained and swollen from my totally clumsy way of navigating the world, but it’s never chronic pain like this. I mean this is actually, pain. Like a really terrible headache, but in my body. Sometimes I can feel the toxicity-based-pain in my skull and in my fingers- no bone is spared, but mostly, it moves quickly between my hips and femurs and ankles. I am the highest dose of the medicine that’s supposed to fix this, but alas, it hurts like a b*tch. Luckily, it won’t last forever. As soon as the ugliest poisons are diluted enough each cycle, the bone pain will fade, leaving in its place neuropathy, which means that my hands and feet are basically numb from absorbing so much toxicity. Probably, the bone pain will fade tomorrow. Then I have one more cycle left.

Today, I went to an academic lecture and discussion at UBC. I went to a different one last week, and at the beginning of that one, the speaker said something to the effect of, “I want to invite you to do whatever you need to do with your body to be comfortable, whether that means walking around, stretching, laying on the floor, sitting on a chair, etc., in order to bring awareness to the ways that academe shapes and disciplines our bodies and excludes particular ways of being in the world through that shaping/disciplining.” I thought that was so cool, and today, I would have taken her up on the offer. After ten minutes of listening to today’s lecture, I couldn’t sit in my chair any more. The bone pain was traveling between my hips and my femurs, and I had to get up. I stood in the back, pacing and bouncing and marching in place. I’m sure people were like what-the-eff? I worried I’d distract the speaker, but she never looked up from her paper.

And so then we moved spaces, and the group became markedly smaller, and we had a “discussion.” I warned the person convening the discussion I’d need to move about beforehand and she was entirely fine with my doing laps around the meeting table, but I’m sure the other participants were like WTF?

I can’t fold my body that way. I can’t fit into academe’s stringent body-shaping. I can’t sit in a chair for more than ten minutes, especially if its lecture/professional-style, with my feet on the floor and my hands in my lap, and the only variation is crossing my legs.

Today’s experience trying to mold my body into normative shapes and be comfortable about it felt glaring. It was just another time, and now, a time where it was very obvious to others, that I no longer belong in the realm of the healthy normal, a time where I had to broach normativity and where I embodied otherness in a way I never did before cancer. You see, I am and have a body I can normally make fit, a body that can normally access privilege without a second thought. I am a white body, a cis-gendered girl body, a body that is whacked and policed and monitored through gendered body image, but nevertheless a body that fits in airplane seats easily and that can fit into the sizes available at stores where I shop.

Because of my body, I’ve gotten a lot of “things,” if you will- I’ve gotten on airplane and flown across multiple states without any identification post-9/11, and I assure you, this ability to convince folks I was just a girl with a lost purse and a real need to get home was directly related to my race and gender and relative young-ness. At that point, I was probably twenty, maybe twenty-one, and I smiled cute and shrugged my shoulders and forced my eyes to fill with tears when they tried to block me- and suffice to say, I got from Houston to LAX without a hitch and even ordered some alcohol on the way.

Similarly, most of my before-cancer experience in hospitals took place in Latin America, where I was a white female body negotiating for care for other white, mostly cis-gendered female bodies. I knocked that shit out of the park- I got the best doctors and I cut all the lines and had all the tests expedited. I refused to wait, and so I got what I wanted- be it a helicopter to air-vac a teenager from Nicaragua to Miami now, or be it skipping ahead of the waiting-room full of patients, or be it having the doctor close her office to drive with me two hours to someone with an allergic reaction. You don’t need to tell me how insanely colonial and racialized this is: effectively, I used the power afforded to me by my white skin, my emergency credit card, and my ability to demand I get what I want to make sure my people were treated before everyone else. I took full advantage of all sorts of privilege and justified it by saying that the people I was caring for needed it, and that I was insanely busy and couldn’t wait in the waiting room. We could do a whole analysis of development work and youth programming vis a vis health care, and the sorts of colonizing relationships justified in the face of something like health, or safety. But such is not today’s topic.

Today’s topic is that today, the multiple ways in which cancer has othered me, in many ways for the first time ever, became blatantly apparent in the lecture, when I became so other, so unable to meet the simple and normative standard of sitting in a chair and listening. It’s not just this moment, there are many moments in which cancer makes me the other.

bell hooks, writing about her experience in graduate school, writes “nonconformity on our part was viewed with suspicion, as empty gestures of defiance aimed at masking inferiority” (hooks, 1994, p.5). Refusing to conform by sitting did indeed warrant scowls and stares, raised eyebrows that seemed to suggest, “And why can’t you simply, sit? And why can’t you discipline your body, as we are, here, together in this room?” Of course, they would have certainly looked the other way and nodded knowingly, probably with pity, if they knew I had cancer. But they did not know, and they seemed to ask, why must you refuse this basic norm, when we are already here in a space that feels threatened, discussing critical race theory, when we are here already trying to undo legacies of colonialism, racism, misogyny? Of course, they didn’t actually ask, and I am writing of how I interpret their gazes on my body, their turned heads and the feeling emanating from their body to mine.

I wonder, did they remember what the last speaker asked, about making space for bodies out of chairs? Did they watch me bouncing on the balls of my feet in the back of the room and think, like I did, of the last speaker who gestured to refusing that our bodies be disciplined by chairs? Did it occur to anyone, that we were together discussing global justice, talking about capitalism and its ill-will, and that, perhaps the reason I was pacing was because the front-end of capitalism- cancerous invasion of our bodies- was playing itself out inside of my breast?

No, I am sure they did not think that. But that is not the point. The point is, cancer has forced me to experience otherness in a way I never did before. Even in the cancer-world, I inspire horror. Regularly, when I meet older women with breast cancer- which is like, every day- they gasp about my age. Their hands fly to cover their mouths as they murmur, “but you’re so young.” In the regular world, horror, too. I inspire skin-crawling fear. I embody that which no one wants to be. Nobody wants to imagine it could be them, and I’m too close. That girl, that almost-Ph.D. with cancer. It’s easy to imagine it only hits the old people, the sick people, the people who drink too much coke and eat too much fast food. Having me in your midst disrupts that false sense of security, pops the bubble of the other— the other is your peer, your graduate student, the girl sitting next to you. Even at the breast cancer exercise study, I’m decidedly othered as impossible in relation both to the many older women present, and most significantly in I’m othered as impossible in relation to the graduate students working on the breast cancer project: for they are different than the women with breast cancer. Except then there’s the grad students with breast cancer. Sorry dudes, I’m here. We’re here.

There are of course safe spaces. There are safe spaces too, of course. There are knowing nods from other women with cancer. There is the fact that everyone in my academic circle is insanely supportive. There are big hugs and knowing hugs from my academic mentor who had cancer, and who is of course in charge of this space.

But still, there are the raised eyebrows. Surely, they would turn right into kind eyes if they knew, but I think the point here is that we can’t always know. Besides, its entirely unfair to only be accommodating when you know, and puts the burden of educating and informing and telling directly on my shoulders to expect me to justify not being able to fold into an appropriately disciplined chair so that others can be comfortable, can be knowledgeable, can make kind eyes instead of eyebrows-raised-eyes.

And so I have to wonder: what might a pedagogy look like, where there are no expectations? Would it be a pedagogy of encounter? Situating the self in relation to other in such a way that denies and rejects expectations is such work: like anti-racist pedagogy, it takes consistent encounters with the uncomfortable, consistent ability to reside in a space of unknowing, consistent willingness to f*ck up. How might we encounter the political in the space of cancer, in the face of the constant seduction of normalcy, of body policing, of urge to hide cancer, of positivity? What does a political pedagogy of cancer look like, and how do we engage such a pedagogy as communities of people where not everyone has cancer?

I wonder what would happen if we took the chairs out of the lecture? What if we sat on pillows instead? What if we started each lecture with some way for participants to share their experiences of the day, like -oh no, here we go- with an energizer or short check-in? What if we put on different ways of sensing the world, and thought theory through those glasses that are not our own? How do we think about what is radical and political, in a space already so policed that we almost need normativity in order to gain credibility? What does it mean to be a young scholar who cannot fit oneself into normativity and cannot thus gain credibility that way?

There is much yet to think about in terms of how cancer others.

There is much yet to think about in relation to how we might engage a political and embodied pedagogy of cancer.

There is much yet to think about in a world where we so clearly wish to ignore, expel and banish cancerous bodies.

so you have an opinion about my mastectomy

Maybe I brought it up. Maybe you asked. Maybe you know I’m thinking about it. And you have an opinion about my mastectomy. You want to share it, and while you have an inkling you have no idea what you’re talking about,  you share anyway. Sometimes you preface your opinion with the reason why you see yourself qualified to offer said opinion, and your reasons range from “i have children therefore i know” to “i have been thinking about this a lot” to “i just don’t want you to have to deal with this again.” Unless your reason for sharing your opinion is “i had a mastectomy,” your inkling about not knowing very much about mastectomy is probably so completely, totally right.

Now don’t get all worried if you’ve over-shared your opinions with me. I’m writing about this to describe how it feels to be showered with other tons and tons of other peoples’ opinions when the vast majority of those opinions are totally unhinged from what it is actually like to consider mastectomy. I’m writing about this because I am thinking about it quite a bit right now. I still love you lots, and I’m probably not even thinking of you when I write these things, and actually, if it were just you who shared your opinions, that would have been totally fine. What’s disconcerting is the onslaught of opinions.

First of all, its masTectomy, not masectomy. Now, that we know how to say masTectomy, let’s move to the second thing.

It’s not a boob job. That comparison is really awful. And it’s also totally technically wrong: a boob job involves inserting silicone implants underneath breast tissue so that the breasts look larger. A mastectomy involves removing all of that breast tissue and, if there is a reconstruction involved, inserting silicone (or fat from another part of the body) right under the skin. There is no natural or functional tissue left in the breast. The look, feel, and reason for having a mastectomy are entirely and completely different from a boob job.

There are precious few people in the world who understand mastectomy. There are of course, doctors. They get it. They have a boat-load of research in their brains when they recommend this and that, and for every person out there telling me I should have a double mastectomy, I want you to know that the surgeon recommended I have only a lumpectomy + radiation, the radiologist is loathe to radiate me for concern of radiations’ 20, 30, and 40 year side effects and so recommended mastectomy, the plastic surgeon reminds me at every appointment that a bilateral mastectomy will not improve my survival, and the oncologist nods her head and says this is a horrific decision to have to make and that any of my options- lumpectomy, unilateral or bilateral mastectomy- would be a fine decision. Did you get that? A bilateral mastectomy will not improve my survival rates.  Now, that doesn’t mean I shouldn’t have one. All it means is that the reason for having one should not be “to make sure I never get this again.”

I like to consider myself quite informed. I have read many, many documents about my options, and had many, many conversations with doctors about my treatment. However, there isn’t consensus on what I should do generally in the medical community—and much is left to me to decide. Given this situation, it always suprises me that in both popular culture and in my personal relationships, there is major policing over this decision. In the public eye, bilateral mastectomy is an unnecessary decision, one that women should basically never make. This is especially interesting to me, because most people around me emphatically explain to me why I should have a bilateral mastectomy, even though they say in the same breath that they don’t understand all the complexities of the decision.

It’s all policing, regardless of which side of the coin you fall on, I think. Folks want to warn me not to be drastic, and also, to be drastic enough that this won’t happen to me again. As if having a double mastectomy is going to prevent this from happening again. The risk of metastatic breast cancer— breast cancer showing up in my liver or bones— is much higher risk than getting a contralateral cancer in the other breast. And yet, each time I hear people tell me to have a bilateral mastectomy, the subtext is if you don’t have a bilateral mastectomy, and you get breast cancer again, it’s going to be your fault for not having had the bilateral mastectomy. This is probably not what anyone is thinking, but it is certainly what I am hearing and it is how the words are shaped and formed. Words have histories that are invoked when we speak them, whether we mean to imply those histories or not.

Mostly, what I hear about mastectomies is practically everyone telling me their opinions, what they think I should do, what they would do, and how I should make a mastectomy decision. Sometimes I want to remind people I am an adult with a f*ckload of research skills and I can probably decide what I want to do in a fairly methodical, very data-informed manner. Sometimes all this uninformed advice makes me want to whither away into a thousand “idontknowidontknowidontknowidontknows” and never come out from underneath the thickest, heaviest, darkest blankets.

It’s horrible to consider cutting your body parts off. Horrible. I hope none of you ever have to do it, and I hope the only way you ever know about this particular horror is through me. The horror goes far beyond the medical, and stretches into all kinds of spaces that before, I wouldn’t have thought about in relation to mastectomy.

There’s the simple fact that chopping off both breasts destroys many layers of “what I would have done” in my life, if it were not for breast cancer. Sam and I were getting ready to have kids. I would have breastfed them. Now, that option is contingent on a particular kind of surgery. I know lots of people don’t breastfeed, and I know their children turn out just fine, and I also know that’s not the issue, at all.

The issue, rather, is that my options are scrambled. The issue is that I would have done something I now cannot do, and my not doing it is out of my control. Moreover, that something I wanted to do is related to something even bigger: something I wanted that looks absolutely nothing like it would have, pre-cancer: babies. Our entire baby-plan, a smaller part of our life-plan,  has been spun way beyond out of control. It’s not like I didn’t want to breastfeed, or like I couldn’t, or didn’t like it, or like I struggled too much. It’s that I didn’t even get to struggle, decide I didn’t like it, or make another decision. It might not be an option at all, or it might be, if I have a unilateral mastectomy. Lots of people have had opinions about my mastectomy decision in relation to breastfeeding, and while sometimes part of me wants to hear those opinions, most of me wants to tell everyone telling me babies will be fine without breastfeeding to shove it. What that comment articulates to me is that my sadness/concern/anger is wildly misunderstood. I’m not angry someone else decided not to breastfeed, I’m angry I don’t get that choice.

There’s also this: no sensation. None, even in nipple-sparing reconstruction. Most of the women I know who have mastectomies really hate this part. And those who have had reconstruction complain about how their breasts feel like silicone bags with skin over them: literally, that is what they are: silicone bags with skin over them. There are some coolish surgeons in the states who are attempting nipple-sparing mastectomy without sensation-loss, but I currently am insured in Canada. Loss of all nipple-sensation on both sides is pretty hard to swallow, given I intend on being a totally sexual being for many decades to come.

And so I am trying to decide for myself. Trying to weigh the risks. Trying to weigh the feelings. Trying to weigh what I want in life. Trying to stare into a crystal ball and imagine a future. Playing with fate. Women don’t die from cancer the first time around. I suppose, that a second cancer in the other breast wouldn’t kill me, what would kill me is a metastatic recurrence from this cancer or the fictional second cancer. And also, I never ever ever ever ever want to go through chemotherapy again. And I do mean, never.

I’m not ready to give up the sensation in either breast, I’m not ready to forgo my option to breastfeed hypothetical children who don’t even exist yet. I’m not thrilled about having the left breast hacked off, but I’m down to live well into my nineties, so that’s what we’re looking at. I am beginning to feel rather grounded in the idea I have concocted with my multi-disciplinary medical team: have a unilateral mastectomy, and in a couple of years, have the other mastectomy on the other side. The second mastectomy will be post-babies, or it will be the result of realizing I no longer want to live with the worry- and it really is a worry more than anything- of cancer in the other breast. Hopefully, at that point in time I’ll be living somewhere where I can access the surgeons who can do nipple-sensation-sparing mastectomy. And if I’m not living near and covered by one of these surgeons, hopefully by then I have found the gold at the end of the rainbow and I can afford that sort of surgery.

I feel grounded in this plan because my oncologist suggested I could have yearly MRIs. My earlier plan to do both breasts was related to the fact that mammogram is a totally failed technology, especially in young women. Mammogram already failed to detect my current cancer: yep, that’s right, I had a negative mammogram. And so, I could hardly move myself to trust a screening device to find a new cancer that has already failed to detect my current cancer. But the MRI option sways me. I feel OK with a yearly MRI. MRIs detect everything, but have a very high sensitivity so often lead to unnecessary biopsies. Biopsies freaking suck. But they suck WAY LESS than cancer. Probably, if I have very many- or maybe, any- need for a biopsy, I will opt at that point for the second mastectomy.

Sometimes this ordeal makes me feel like my body is crawling with tourists. Everyone wants to check in about it. I want to tell everyone, and I want to tell no one, and I feel both of those ways at once. I’m bursting at the seams to discuss it and I’m exhausted at recounting all the details. It’s challenging to center myself in what we want for our future- not what someone else wants for theirs- when we go about making these decisions.

And so I go about my life chatting about this when it comes up, and giving myself permission to shut down the conversation. I’m dying to talk about it with my cancer buddies, because even the ones who have other cancers immediately grasp the gravity and their own not-knowing. I talk about it with my plastic surgeon in the locker room at yoga when I see her there, and I listen to the stories of my twitter-cancer-buddies, which are all over the breast surgery and reconstruction map. I am coming to my decision. Slowly. Carefully. Grounded only in what I know to be true for me, for my body, for right now. What a strange sensation, to only listen to my gut.

This may the most pronounced time I have had a situation in which I really need to make a decision only for me. Only what I want. I am suddenly wildly aware that no one else feels like this inside their bodies, that the onslaught of advice can be wiped away, that it really does not matter at all what everyone else thinks. At all.  As a woman, this is profound. When do women make decisions where it doesn’t matter what others think? I mean, really, when did you last make a decision where you didn’t consider everyone else? I can’t remember when I last did that. Maybe I never have. Except now. Now is the time to detach from everyone else. To ignore what people think. To decide for me, and for my body, alone. Because really, this is only happening in my body, and only from inside of my body can I ever really know.

I’ll let you know what I decide. And in the meanwhile, I’ll keep the plastic surgeon jumping changing my mind every other day. And I’ll keep telling her about in the yoga locker room, which I’m sure she adores. And maybe I’ll wear some purple hair while I’m at it.

creating comfort

There are two, no, three blog posts that have been hanging around for a while in my head, waiting to be written. One in particular has been hanging around since the first of the year- about hair loss. I keep pushing it to the back of the metaphorical cancer closet because the only people I want to talk about it with are other young women with cancer. It’s just too intimate outside of that itty-bitty circle, which literally has like 4 people in it, plus a wide twitter community. Then there’s the blog post about the Scar Project. That one I’ve actually started writing, but it just seems exhausting at the moment to get into the whole body image discussion, where there are women and scars and and sexy and ugly and images and oh, it’s juicy but I need a good long afternoon after my diss has been sent off to the external examiner. Then there’s another, about the mastectomy decision, and what- and how- I’m deciding, and how everyone has an opinion but the only opinions that matter are mine, my doctors, and Sammy’s, and how often I end up having to comfort other people about my own damn mastectomy, and how no matter what anyone says or does the absolute crappiest decision ever is one where you decide how many body parts to cut off of your body.

So, there’s all those blogs percolating in various parts of my brain. Sometimes I think about them in yoga or write sections of them while I cook dinner. Sometimes I don’t think about them at all. Sometimes when I’m writing and writing my dissertation I only wish I was writing and writing about these things. Sometimes it makes me feel so much better to write about cancer, like once I write it down and send it off in the world I no longer have to hold the space for all these ideas and feelings and worries and experiences, because the interwebs- and you, my dear readers- are soaking them in and making your own sense of them.

I’m not about to embark on any of these conversations today. Today I just am going to write about creating comfort. About what it means to let those big, heavy, important blog posts sit somewhere else while I write and sip coffee and do yoga. I’ve discovered the only way to get through cancer-crisis is to create a world full of comforting things, a world that is warm and familiar and tender and careful. I’ve literally built my day and my schedule and my surroundings around comfort. When I wake up and things are familiar and soft and full of beauty then I can start the day centered. When I do the same thing while I have breakfast and wear the extra soft socks because I like how they feel and drink lots of clean, filtered water because my body craves it I feel more centered, more grounded, more able to reason with my oncologist and go about my day even though there is a glob of cells in my breast that are dividing so fast they are out of control.

Sammy hung an old sheer turquoise curtain in a drape-y way over our bed. I love it. It feels like we get to go to sleep in a secret place that is full of magic. If you have ever lived with me you know I can’t help but leave dirty clothes on the floor, but the sheer-drapey thing feels so comforting when you walk in it even makes me want to toss my dirty clothes in the laundry bin to preserve the pristine feeling of sleeping under a sheer turquoise drape-y thing. When I was a kid, I always wanted a canopy bed. I thought they seemed like they were build for princesses and that they would make the best kind of comfort to sleep, ever. The sheer turquoise drape-y curtain hanging from our ceiling is like the grown up version of the canopy bed. And it’s comforting.

I’ve started reading every morning when I have my coffee or tea or juice. I love it. I don’t open my laptop until after breakfast. I just got a Kindle, so now I”m reading on that, and even when you read academic books on it, its so fun to read on it kind of makes them seem like reading for fun. I guess McLuhan was right about the medium being the message, after all. I’ve come to love this quiet morning time, while Sammy is still asleep and our world is quiet. I sit in the same chair every morning, and stare our the window, and I know I get that time regardless of applications due or conclusions to edit or emails to send. It’s a great little ritual. And it’s comforting.

I go to yoga, and I’ve completely given myself permission to drive to the studio across town or go at a weird hour because I like the teacher better. I don’t care. It’s worth it to attend a class that is familiar and comfortable. The yoga itself, too, is repetitive, wholesome, warm, familiar. Truly, I don’t know what I’d do without the yoga. I don’t think about anything when I’m in yoga, mostly because it’s too hard and body-consuming to think anyway, and I like it that way. During yoga, the body pain fades to a distant memory as I stretch and sweat. It’s the same thing every time, and there are no suprises, which is really awesome because in cancer, there is so little known that there are only suprises. It’s warm, the same, it’s indulgent and it’s a solace where I am untethered from my phone and my computer and everything else. And it’s comforting.

I wear colors that are calming and centering. I wear wigs that reflect my mood. I wrap myself in sarongs and sweaters that feel warm and soft, and I pick turquoises because they are calm and expansive, and reds and oranges because they are fiery and welcoming at the same time, and black because it’s fierce. Sometimes I wear the long, dark red wig to ground myself in the earth, and it feels like I am connected to something bigger, something expansive, something tender. Sometimes, I need a little magic and the best way to channel that is with a platinum blue wig and big earrings, and sometimes, I pull on the long platinum wig with roots to say, “fooled ya.” Colors and clothes and hair and hats have become tools for mediating the space between my body and the world, for screaming back or breathing deep or thinking hard. And it’s comforting.

Permission. I give myself permission to take a break from working, to watch stupid TV shows, to eat coconut ice cream. I give myself permission to think about how all of these decisions are mine, and to know that I will make the right decision for me. I give myself permission to stop comparing her decision and her cancer and her needs to my own. I give myself permission to listen to everyone around me tell me what they think, and then toss their ideas out into the wind because, well, they don’t belong to me. I give myself permission to smile and laugh even though I have cancer, and I give myself permission to change my mind, to ride my bike, to have a glass of wine with Sammy at dinner. And it’s comforting.

cancer-helping: appreciative inquiry style

I’m hesitant to write this post. But I will write it anyway. I will write it a la appreciative inquiry.

I’ll write it because whenever I hang out with other young (and not as young) adults with cancer, it comes up. I’ll write it because for some reason,  people keep forwarding me these lists of “what to say/not to say to you your friend with cancer,” which I think it so interesting because I’m the one with cancer, and presumably, I know what not to say. Sometimes, they’re cheeky. Often, they’re grimly funny. Always, they hold some truth. You can easily find multiples of these lists if you google “what not to say to your friend with cancer,” or something like that. Periodically, they float around Facebook and even other sites like HuffPost and NYTimes. It should be easy to find them.

It seems that, although there are myriad of these lists out in the world, those of us with cancer are driven to write them again and again because people don’t read them, and/or continue to say the things on these lists. Chances are, if you can find it on a list someone has said it to me at least twice, and I’ve talked about it with other young women with cancer. Sometimes I think there are so many lists like this that the over-proliferation of “what not to say” lists is why sometimes people tend to total radio silence: absolute fear of actually saying one of the listed “what not to say” things, because when you read them in list form, they seem absolutely insane. They provoke reactions like, how could anyone ever say that?!?!? Trust me, everyone could say these things, often they do, they don’t mean to be so wildly insensitive, and it doesn’t seem like they are so horrendous in the moment. Enough people say these things that I have a collective list running with some cancer-buddies. Even I could say these things, and I have cancer.

So, I won’t repost, reiterate, retell the same story about what-not-to-say, though mine is a related one. This is a story about the helping everyone around me wants so badly to do, the helping that always falls short of actually fulfilling what everyone would like to do, which is to take away the cancer. This is a story about the famous line, “let me know if I can do anything, anything at all,” that is accompanied by eyes that speak volumes more, that are spoken by dear people all around who desperately want to do something, anything. I am so fortunate to be surrounded by people who always let me know that they are willing to help me in any way I can dream up. And I think that when they say “let me know if I can do anything, anything at all,” what they really mean is, “I am so sorry I can’t make it go away. I hate that I can’t make it go away. I want to think of something that will make it at least a little tiny bit better, but I have no idea how to do that.”

Thing is, I’m not ever actually going to call any of them and ask them for help with anything. Why, you ask? Because I have no idea what to ask for, I have no idea how to start the conversation and while I do actually need help with many things breaking them down into chunks that won’t overwhelm my friends is cumbersome. I’m worried about overtaxing you. I’m worried about your reaction to this total madness. I don’t want to be treated like a tragedy, and helping sounds like something you do in a tragedy.

Now, if you’ve offered to do something for me, or help me with anything I need, please do not feel bad. I really, really do appreciate the sentiment. It’s lovely to know people are thinking of me. Frankly, I wouldn’t know what to say in many of these situations either. It’s a little mind-boggling, which is both why you look at me with those big eyes and offer to do anything I need and why I have no idea what to do with your kind offering of “anything I need.”  I don’t often know what I need right now, let alone tomorrow or next week.

So, I’ll list here some of the most helpful things people have done, that don’t make me feel like a tragedy, and that are very helpful. I think the done part is key: all these people acted. Sometimes, doing is really helpful. Sometimes, friends know what might make the day a little brighter, or the treatment a little less awful, or writing a little easier. They did something, and its the action there that is the best thing, ever, because it’s concrete. It’s a concrete suggestion/offer/action, and I can engage with the concrete, and I don’t need to do any of the work thinking up what they could do that would be helpful.

This exercise, for me, is a little appreciative-inquiry-y. I learned about appreciative inquiry from my artist-friend Sita back in 2002, when we were but baby AMIGOS living in Barahona, DR. She is someone who can sit quietly in any corner of the world and listen, and hear beauty. Not rainbows and unicorns beauty, but real, solid, thoughtful, inspiring beauty. She can then move others to listen carefully enough until there is a whole symphony of beauty sounding out from that corner of the world. That’s something to aspire to, and that is the embodiment of appreciative inquiry. When we think with an appreciative inquiry lens, we think of what’s worked really well and acknowledge those things working well, and make more of them, because we know that our bodies, communities, worlds are capable of healing themselves without the crazy amount of fixing and making better that are endemic to the Western world. It’s a way of thinking about situations and people and worlds that have historically been treated as broken such that we can recognize capacity and sparkle, and build on capacity and shine sparkle. It’s about vibrancy, it’s about what already exists, what is already right. It’s about holding others carefully and closely, and seeing creatively, and it’s about a deep respect for others and it’s about grounded hope.*

So here we go, a list of the most awesome ways people (some of these the same person over and over again) have helped, when I didn’t need to come up with what they could do or what I wanted them to do or what I needed:

  • I got a text message today that said, “What was the happiest moment of your day today?” Immediately, I knew she was thinking of me. I was invited to think of something sweet. With her text, she acknowledged that my life is not entirely crap-filled, by suggesting that something was great enough in my day to share. In responding, I got to think about multiple really special things about today, and decide which one to share with her. It was a mutual exchange. I could ask the question back, and she could answer, and I could delight in her own moment of happiness.
  • Appointment Buddies & Remembering Dates One friend asked for my appointment dates, my chemo dates, all kinds of dates. He periodically checks in before each of these dates, which he put in his calender, to make sure Sam can come with me or I have a buddy, and/or offers to come. I don’t have to ask him to remember. I don’t have to remind him. I know if I need a buddy, he’ll ask a few days before. It takes all the pressure off of me to make sure I have someone coming. He’s totally fine if I already have a buddy, and doesn’t mind being on stand-by in case I need one. He lets me know exactly what his schedule is around the appointment times, and around my chemo times, so that I know when he can help if I need help.
  • Persistent phone messages An old friend has left me probably four phone messages in the last two weeks. We recently caught up on facebook chat, but we still have not found a time to talk on the phone. Nevertheless, she continues to call. Because she continues to call and leave sweet messages, I know she isn’t upset with me for not answering, but rather, that she supports me and that when I have the time and spirit to pick up, she’ll be there. I know she cares. And she showed me its OK not to answer, both by saying so in her message and by continuing to call.  Her persistence is really important to me. It makes it so clear that she continues to think about what’s going on, and she continues to be there. She keeps calling. It’s incredible.
  • Normal Days  I have cancer, but I’m still me. I still also like to drink almond milk lattes and get my nails done. One friend in particular knows this really well. She still talks to me about the same old drama we’ve always loved to gossip about. She doesn’t ask invasive cancer questions. She shares whats going on in her life. We make dinner as we always have. The normalcy with which she approaches this new normal is comforting. She still expects me to support her, and I still want to. She still supports me as she always has. Going to a doctor appointment isn’t so different from meeting for coffee, after all. It’s really lovely to have a friend continue to be as she always has been, even though things have became anything but as they always were.
  • Pajama Box I have received two lovely packages with fuzzy jammies and socks in them. This is awesome, because it says, “Hey, I know things kind of suck, here’s some warm and fuzzy things that might make it suck a little less. Also, since my feet are freaking out from the chemo in the form of painful nerve damage to the soles of my feet, the fuzzy socks are now my best friends.
  •  Borrowed Movies I was really worried about my fourth chemo, because I was insanely sick after my third chemo. A friend brought me a splendid set of her movies, which I diligently have watched since the last chemo. That gave me something to look forward to even though I was dreading feeling crappy, and something to distract me from the fact that I was too tired to do what I wanted to be doing. And every time I get to watch one of these movies, I think of this friend lending them to me, and feel special that I am lucky enough to have a friend with such an amazing collection of DVDs.
  • A memory A girl I worked with on youth projects, and with whom I shared an absolute love of poster-making, sent me a set of poster-markers. These poster-markers were particularly cool, because they were exactly the same as the ones I attempted to quietly steal from her, one by one, during the time we worked together on said youth projects. This made me laugh. And dream up ways to use the markers. I was transported to another time, to a happy moment, and to a whole bunch of caring and friendship and ridiculousness I shared with this girl. I also knew that she would be using the same set of poster-markers as she cavorts around continuing to run youth projects, and that made me hopeful and excited about something else in the world.
  • Dinner & Snack-Pack Last week, someone brought me what can only be described as dinner and a snack-pack. They made a really simple dinner that was bland enough for my sensitive taste buds, and delivered it wrapped with ribbons. I did not know it was coming. It also came with a brown bag of tangerines, peanut butter & rice crackers, and a gingerale for me and a coke for Sam. It was really simple, but it was so important to me that this person also thought of Sammy- with the Coke! I’d never drink coke, but he loves it. And he’s also right here, dealing with everything with me, doing all the dishes and making sure my supply of frozen grapes isn’t low. It was really nice to have him remembered. And the tangerines and PB&crackers were a lovely next-day snack. It was so thoughtful and touching to come home to an already-made dinner after a long day of appointments.
  • A Visit From Afar Especially when people come from far-away, it’s a relief both to know they are coming and be able to express that that feels good, and then, for them to handle the rest of the process without me. It’s true, that it wouldn’t be OK for everyone to come a-running to Canada, but a few people visiting, mostly people from the inner circle and old friends, that’s really great. A friend called and said, “OK, I booked my tickets!” after we talked briefly about her coming a certain weekend. Another wrote and was explicit about exactly what she wanted to do while she was here, checked dates with Sam, and then also booked her tickets. I didn’t have to do much either time, beyond have one single conversation about how it would be great for them to come. I do live far from a lot of my nearest and dearest friends, so these visits are always welcome, and its so nice when people will lie on the couch with me, or go wig shopping, or endure an appointment, or eat plain rice and steamed veggies with me, or go with me to Bikram yoga because they’re here even though they hate the heat. I appreciate how little I have to do to make these visits happen, and how easy they are.

*Grounded hope. It’s a thing. It’s different than just hope. I have more to say about why I needed to qualify the hope as grounded, but I’m too tired right now, so I’ll write this little footnote later.

Sunshine

Today, sunny. Finally. Awesome.

I got up early and I wrote, and I had a orange-berry smoothie that was delicious. I drank it all and it tasted like sweet magic. I it’s got to go to morning yoga, and I could do all the postures, and it was warm and familiar and I felt so powerful and centered. Now I’m sitting in a cafe, without a single commitment to anyone this afternoon. I have the whole rest of the day to listen to classical music and work on my dissertation. Even better, I want to work on my dissertation, and I feel well enough to work on my dissertation. Tomorrow my best friend comes to visit, and it’s supposed to stay sunny.

Remember in the Land Before Time, when Little Foot found that leaf in the desert, with the droplet of water in it? Well, if you also grew up in the 80s and 90s and watched Land Before Time as much as my cousins and brother and I did, then you probably remember. It’s a lovely moment, and he looks into that water in the leaf in the desert, and Little Foot finally has something to drink. Today isn’t exactly like that, it’s just a little like that. It’s a handful of sunshine and feel-good in a place where there isn’t a whole lot of awesome.

Sure, I’m still tired. My stomach turns if I think about the next chemo or whiff the wrong smell. But I feel a thousand times better than yesterday, and five thousand times better than the day before yesterday, and…. Now, that’s all that matters. Feeling well enough to do things I love in the world. Feeling well enough to get excited about the urgency with which my diss awaits. Feeling well enough to hole up in a cafe to write. Feeling well enough to stop and buy the cats treats. Feeling well enough to walk from yoga to the cafe and let the sunshine fall on my freckled skin. Feeling well enough.

So here’s some random wig pics…

yoga

Today, I went to yoga. I’ve missed lots lately, because of various procedures, appointments, surgeries. Normally, I go daily, often five or so times a week, though cancer has seriously cut into my hot, sweaty Bikram time.

Yoga. One of my favorite teachers says, always, “Yoga means union. Yoga means unity. Yoga means you.” She is right. Yoga is warm (hot, in fact! It’s Bikram!) and familiar, especially when the snow is falling on Vancouver and I am asked to repeat my name and birthday four hundred million times to four hundred million medical professionals when I walk into a hospital, which is like, everyday. The poses are always the same, my body knows them. I know what is coming and at the same time, I haven’t a clue, but even in the not-knowing how it will go any particular day, yogeando,  as we call it in our house, is the most awesome, mind-clearing, body-feel good, instant-skin-refreshing, experience. I love.

Today, I did something I never do. I left. Before the class was over. It’s totally taboo to leave before the 90 minutes are up. But tonight, my port incision pulsed. I can’t lay on my belly. My lymph node incision really began to ache. I was tired. I felt pulled to writing my diss conclusion, hanging in the balance at home.

And so, after the long halfway break and then the first posture, when everyone flipped to their bellies and it became apparent my seriously marked up chest- two port incisions and a port-bump, a neck biopsy bruise, a lumpectomy scar, a giant blue blotch of dye from the node surgery, and a node removal scar- was not going to have any of the laying-on-the-belly savasana, I decided I’d had enough. I relaxed for a bit, drank the rest of my water, put my rings back on, and tip-toed out.

“Yoga means union. Yoga means unity. Yoga means you.”

Sometimes, yoga means listening to the body, responding. Listening to the scars screaming for cold air, even as the muscles need to stay so badly. Bringing the body back into balance with itself, re-channeling energy and being kind to the broken body parts, the parts marked so barbarically by modern medicine.

Slash/burn/kill. This is cancers’ treatment. Unable to distinguish between good and bad, vibrant and malicious, nurturing and abnormal, the slash/kill/burn approach throws unity, union, you out with the wind because there is not another choice. There is not enough knowledge. There is not a way to distinguish, to pick apart, to know what is good, vibrant, nurturing and what cells will soon morph, becoming bad, malicious, abnormal. Yoga pleads, in contrast, for unity, union, you. For centering in unknowing, for salty sweat in eyes and for locked knees and for yearning for clean, fresh water. For warm spaces, for familiar movement, for favorite teachers. For back stretches, for flexible shoulders, for touching the head to the knee. For imagining a posture is a theorist, and rocking it. For yoga-breathing in the midst of haphazard writing. For a cell phone left in the car, unanswerable. For a deep breath and a comfortable familiarity and a sweet release.

Tonight, I am thankful to have yoga. It’s bring a friend for free month. What Vancouverites want to come with me? Email me!