A Tale of Two Lumpectomies: Oh Good Intentions

Remember October 7, 2013? Oh no, of course you don’t remember. That was Before Cancer, that was Before The Blog, that was quite simply, before. On October 7, 2013, I had a lumpectomy of what we thought was a non-cancerous lump in my left breast. Obviously, we were misguided by the radiologist who said “I’d fall out of my chair if you had cancer.” Even before we knew of the cancer, that lumpectomy was a big deal. My mother activated the gossip chains and my cousins called. My friends came over. People brought ice cream. Sammy took time off work. The list of people who requested a “she’s out of surgery” text was quite lengthy. It was a Big Deal. 

Fast forward to the same surgery, on the other breast, on August 6, 2014. It was so completely the opposite. It was not a Big Deal, and it was not even a Little Deal. I forgot to tell my bestie the date was changed. I bottle fed a litter of kittens as soon as I got home from surgery. Sam didn’t take any time off. Friends patched together who would take me, wait with me, pick me up (and I am insanely grateful for the way they made me laugh during the ridiculousness). No one required a “she’s out” text. I went to yoga two days later, ran a media workshop four days later, and chucked the pain meds into the overflowing medicine box without taking a single one. It was so completely not a Big Deal. It was not even a deal of any kind. It just kind of happened. 

It’s all relative, isn’t it? What we need from others, even for the exact same procedure, varies widely based on where we are in life, what’s going on, the circumstances and relative experiences. Of course, I got incredible emotional support from lots of people for both procedures, and amazingly, I got what I needed both times. The first time, I needed lavish attention and pints of ice cream and reassurance; the second time, I needed mostly non-attention sprinkled with humor about the ridiculousness and not too much concern over what was happenning, pathology reports, or outcomes. I got it, mostly, too, which is remarkable. 

It’s remarkable because when we try to help others in moments of crisis, we often lean over the fence and peer into their yard, assess the damage, and throw whichever life ring feels right in our hands. In our hands. That’s the thing, though. When we throw life rings over fences to friends in trouble based on what feels right in our hands, we forget that not everyone’s hands are the same as ours. So often, our helping of others is based entirely in a) our perception of what’s going on and b) what feels right to us. That’s really great sometimes, and sometimes it fails so badly. Like really badly. 

See, there’s two kinds of support communities for me— there’s the always there, always was there, always will be there crowd that includes family, friends, and others who were horrified at my diagnosis and wished they could do more than throw life preservers, and then there’s the young-cancer community. The latter is a community that is really different because they know more than the forever community about what the ground under my feet feels like, about what kind of life preserver I might be able to grasp, about when I really just need someone to swim alongside me for a while. They are separate, these two communities, and they are two communities I want to keep separate- for of course, I don’t want my forever community to become part of the cancer community. 

I want to urge us, though, to recognize where our good intentions come from. When we go to help, who are we helping? Who’s hands are we considering when we select the life preserver, and how could we possibly understand what life preserver would float best if we’ve never had an experience like the person in crisis? I know that when there are lots of people around throwing life preservers, it can be overwhelming. Often, the life preservers come in the form of advice and suggestions, ideas people have from leaning over the fence and staring at how I’m dealing with cancer, and then opening their mouth to tell me how they would do it, what I should do, how I should do it, how they will help me do what I should do…. 

And it feels like judgement. It doesn’t feel like the loving advice/help/suggestion/support it is meant to be. It feels like someone who has never been swimming critiquing my breaststroke kick. I try to shout back that their suggestion won’t work, but they’ve never been swimming, so they don’t understand how the water feels when my feet are flexed and kicking, and besides, I’m swimming, and I have to keep swimming, or at least, treading water, so I can’t really stop to chat without my mouth filling with water and then the language gets all garbled and the person with the suggestion for my breaststroke kick just keeps shouting their idea louder, and I know it won’t work, and they keep shouting because they love me and eventually I just put my head down in the water so I don’t have to listen to them anymore. And I promise, it was a good intention. 

What did I need, though? I needed someone to follow my lead. I needed them to stop leaning over the fence and peering in with ideas and suggestions and instead, to lay down on their side of the fence and listen through the wood slats, and tell me that they’d keep laying their and listening until I got to the part of the pool shallow enough to stand in. I needed them to start working away at the dirt under the fence, slowly and consistently, until there was enough space to wiggle their fingers through the dirt and into my hand. I needed them to momentarily suspend all of their knowledge (which may be vast) about my situation, and to stop giving advice, and to just be there instead, and support my decisions and actions and needs even if and even when they look all wrong from the other side of the fence. 

It’s amazing and remarkable that, given our desire to lean over fences and help people we care about with suggestions and advice and support we know will work anyone ever gets what they need– and not just in cancer, in any crisis. The first lumpectomy, I needed the attention. I needed the long list of people waiting for a “she’s ok” text. The second lumpectomy, I didn’t. Sure, I still needed a friend to come with me a curse the doctor who put the wire into the lump while I was awake and took forever to do it, and I still needed my mentor to say “well… it is a big deal” when I assured them it wasn’t, and I still needed some cancer-friends to check in with me after the surgery. But I so deeply appreciated that there were many fewer voices shouting suggestions over the fence. I sighed a breath of relief that daily life could go on. I needed some semblance of normal. 

So, on helping. On good intentions. Sometimes they hurt. Sometimes they grate in ways we never expected. Sometimes it’s worth it to halt the good intentions, the helping, the caring, the assuring to make sure the person in crisis needs it, wants it, can handle it, isn’t drowning because she’s attempting to explain why it’s not helping while she’s trying to swim. Sometimes, its unexpected, hard to understand, makes literally no sense from outside. And sometimes, from the outside, we have to swallow everything we know and remember exactly that… we are on the outside. Because, unless we are part of the cancer-friends group- or whatever like-crisis-group, we are on the outside, and we don’t know what’s best for someone else in crisis. It’s just like that. So, good intentions? Ivan Illich said it best. To hell with good intentions. 

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.