Playing the Odds: A couple hundred bucks a month for an 8-9% survival chance increase

“I’m old, so I have to get up and move my legs.” Returning to my seat on the Vancouver-bound airplane, the man sitting next to me, a man who wouldn’t need a fake beard to convince a small child he was Santa, explained. He’d gotten up also.

His admission makes me remember each time I’ve been warned. Hormone therapy has all kinds of side effects, blood clots being on the long list each medical professional- the oncologist, the pharmacist, the nurse who calls himself “The Man on The Breast Team” and giggles each time he says it, like he doesn’t say it every time. The OR nurse who helped me put on the surgical stockings advised me to keep the impossibly tight thigh highs, “For airplanes. Because you’re at high risk. And these are expensive.”

Medically induced aging, that’s what I’ve got. Not the kind of aging you can see right out- not the kind that causes Santa-hair or the kind that causes confusion about how to use social media or personal technologies.

Just the kind that is simultaneously fussed over and ignored.

The kind that involves staring at death. The kind that involves making decisions about shutting down ovaries, for fear of what they produce. The kind that involves wandering through cancerland.

Just the kind that is simultaneously fussed over and ignored.

There’s a new hormone therapy. I’m switching to it. There’s not one right way. No one knows what the right way is, if there is one. But a study came out recently, called the SOFT Trial. The results were published, and the cancer agency made some decisions, about whether they will fund this new, recommended treatment.

They will not.

That’s because there’s not very many patients for whom it would make a difference. Put another way, the fact that it matters a whole lot for a few bodies, and that it doesn’t matter for the majority of bodies isn’t cost effective. The policy seems to scream to me, your body doesn’t matter enough.

Because for me, it will matter. For me, the treatment recommended by the SOFT trial suggests a 8-9% five year survival increase.

That means that if we were one hundred pre-menopausal patients, and if all one hundred of us had grade 3 cancers in our breasts, and if all one hundred of us were under thirty-five, eight or nine less of us would die. EIGHT OR NINE WHO WOULD HAVE DIED, WOULD LIVE. EIGHT, OR NINE. We don’t know which eight or nine. Some will still die. But eight or nine who would have died, would live old enough to go into menopause naturally. Eight or nine who would have died, would live long enough to grow wrinkles in their foreheads and babies in their bellies and careers on the horizon.

The problem is, the standard of care is not built for me. It’s built for a middle aged woman, with a low or medium grade cancer, who has already gone through menopause. And so when the cancer agency decides what kind of treatments to make standard, they don’t factor us in, even if we are one hundred and eight or nine of us would have lived with the new treatment.

And so I will pay. Because there are not enough of me. Because there are not enough of me to make this treatment financially responsible. What does it mean to be body, a body the state decides not to care for, because it isn’t financially responsible?

Certainly, it means my bank account will sink lower still, as I try to make ends meet on an adjunct professor’s meager wages (that is a whole different blog post). It means I will commiserate with my cancer buddies, about whether the cost is worth it to our lives. It means some of us will not be able to afford to switch to a therapy that means our chances at being alive five years out from our diagnoses jumps from from 65% to 75%. Can you believe it?

It feels like the world is eating its young. It feels odd that folks aren’t out protesting. It feels like our bodies don’t matter. They certainly didn’t find their way into mattering enough as the policy was voted on, the decision made. We weren’t even there to raise our hands. They forgot to tell us when the meeting us. And we got eaten, swallowed whole, written right out of medical policy, our best interests cast aside for financial responsibility, because the older masses matter more. Because someone else knew different, and someone else counted, but they didn’t count our heartache, they didn’t measure our dreams, they didn’t account for our desire to live.

So don’t tell me your so and so had cancer and everything was covered. It’s not true in the US and it’s not true in Canada. No, not even in Canada. And besides, stop being that person who loves to position themselves as close to the cancer, as in the know. You’re not in the know, you’re out of it and your “stories” are not helpful. In Canada, I’ve paid for shots to stop the nausea and treatments to preserve fertility and pain medication post-surgery. Yes, I’m plenty aware I’ve been fed cancer treatment on a silver spoon compared to what I’d have gotten living in the country of my citizenship- which, as a graduate student would have likely included (and as an adjunct professor would certainly have included) piecing together chemotherapy in non-profit clinics, addicted to the drug the nurses call the red devil and unsure about how I’d get the next fix my oncologist insisted on. That’s a real thing that happens. But I’m also absolutely convinced, and if you disagree tell someone else because I have zero interest in arguing and I’m not going to entertain your logic unless you agree with me because anything else feels viscerally violent, that everyone walking this planet deserves completely free access to the best medical treatment around.

And you know what else everyone deserves? To be free of disease born of the environmental disaster that we have created, to be free of hormones that stave off what should be a normal substance in the body, to be free of needing, of requiring medically induced aging that can’t be seen, the kind of aging that rubs most deeply on the soul and makes the future blurry.

So let me just go pay for my eight or nine percent five-year survival rate increase. And if that’s too real for you, I agree, it’s effing morbid. So is wondering if the kink in your calf is a blood clot from your hormone therapy. So is wondering if you should explain to Santa’s body double why you need to get up and roam the airplane as much- maybe more?- than he does, even though he’s decades older. So is deciding an eight or nine percent survival increase for cancer patients who’ve barely had their ten year high school reunions isn’t financially responsible. So what are you gonna do about it?

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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.

R/O Mets

I’m scrolling through my phone. Who do I want to know about this? I get to Z, and I don’t want to tell anyone.

I do a search for “cancer.” Ashley, Samantha, Catherine, Tasha, Aimee, Kara, Kristina. They all have cancer after their names, in my phone. Maybe I’m Chelsey Cancer to them too. I pick two. I send out a text. They respond.

No one else knows.

We were walking the seawall. I doubled over in pain, the throbbing radiating out of my sternum. And then it was gone, and I was normal, walking, talking, breathing. I rubbed the bone just under my skin in the center of my chest, the place with no muscle to pad it, the place where my ribs come together. Here, and then not. Painful, and then normal. Weird.

I was doing rabbit pose. I pulled my heels, and then the pain flooded through my chest and I uncurled with a velocity totally unacceptable in yoga. I laid on my back. And then it was gone. I did the next set, and felt just as I did two postures prior. Normal.

Chatting on the phone. I had to stop and breathe. Not too deeply, for that would make the throbbing worse. I pretended to take another call. And sooner than I could have taken a message, the pain dissipated and I went right back to giggle chatterbox.

I emailed our family doc. I don’t really know how to know if this is some normal random thing, or something I should come in for. I’ve had this for a long while now, since the chemo. My oncologist did a PET scan last summer, and it was not cancer making my sternum ache. It was not cancer. She said whether I came or not was up to me, but that I could definitely drop in and she would see me, and I could come in whenever. How are you feeling? I was surprised at how much a doctor could care. I made an appointment. She is sending me off for an X-ray. If you didn’t have a history of breast cancer, I’d send you home. X-Rays are scary enough as it is, since I’m fairly certain my scoliosis X-Rays are what caused my cancer in the first place.

The requisition form reads: acute onset of sternal pain with radiation hx of left breast cancer, on tamoxifen. r/o mets.

R/O METS.

METS.

We are ruling out mets. Mets, in cancer-speak, is short for metastatic cancer. Metastatic breast cancer is what kills. We are ruling out mets, and I have to remind myself we’ve already ruled out mets. Nothing has changed since the PET scan for the same symptoms, last summer. It’s gonna be fine….

I don’t want to tell anyone. No one. I don’t want anyone to worry. I don’t want to see eyeballs fill with tears. I don’t want the pity. I don’t want the swearing. I don’t want the worry. I don’t want advice. I don’t want you to relate. I don’t want anything.

I want to stand next to the ones who know. Who know inside their bodies what it feels like, the ones who have bodies warped by scars and who are riddled with plastic forms holding space where there was once tissue, the ones who know that feeling that feels like a belly full of ice cold water rising up into their chest.

I don’t want to be on the outside of this fishbowl called life, peering in. I don’t want to be on the inside, everyone else peering down into my fishbowl that is void except for my fear.

This is life. Life after cancer. Worry for the future. It is a good day to write a worry on a paper scrap, and roll it up inside my worry doll’s little worry pocket, so that she can take care of that worry that is so real, and so that I can focus on the present. At present, I know nothing except that I’m probably fine. At present, I know I have a long to-do list and a 4:15 yoga class. At present, I know I love Sam and we have great surprises and adventures on the road ahead. At present, I know if I call on them, my people will show up with buckets of love. At present, I know I have to get through this, on my own. On my own, with constant cancer-friend texting.

And maybe with The Song, if I can bear to hear her sing “I think I’ve got everything under control, it’s gonna be fine, it’s gonna be fine” when I feel so wildly out of control, when I’m unsure if indeed, it’s gonna be fine.

And so I scroll through my phone. I still don’t know who to tell. So I guess I’ll blog about it, and then everyone will know. After all, being a bad-ass is about honesty, isn’t it? It’s not about shutting everything inside, it’s not about no-feeling, it’s not about risking it. It’s about drawing the contours of what happened, of what hurts, of how it changed, and being a bad-ass is about making enough space by telling my own story that in the end, others have enough space to tell theirs, too, be it filled with hurt or tears or hope or anger or laughter. Isn’t that what I wished for, the other day, when I attended the Callanish film screening? It is, and I believe we have a responsibility to make this world the way we need it, the way we need it to survive. And so today, I’m doing that. I’m telling. This is what I need. It’s gonna be fine….

we need each other: tiliches, cheese graters, lumpectomies

The hospital jerked around my lumpectomy surgery a thousand times, and they made me feel like a tiliche. A tiliche is, in Spanish, a little rag, one that can be jerked around and that flops in the wind. When I hear the word tiliche, I imagine a red rag tied to a stick, a red rag being whipped around in the wind without any control. First it was next week, then last week, then this week. Thursday then Wednesday then today, back to Wednesday. Tiliche indeed.

You see, I have a benign lump (so they say) in the healthy breast. We’ve known it was there for a while now. On mammogram, ultrasound, and biopsy, it shows as benign. You know what else showed as benign on mammogram, ultrasound, and biopsy? My cancerous breast lump. So I don’t exactly have a whole lot of faith in the medical establishments’ ability to diagnose breast cancer. That’s why I’m having a lumpectomy, tomorrow, to take this lump out and make sure it’s benign. I’m a tiliche in the wind and I don’t have much trust that they know how to find a breast cancer lump in my body.

Each time the wind whips in a new direction, I have to scramble. Carefully laid plans with the best wire-insertion buddies (a totally inhumane procedure in which they insert a wire into the lump so the surgeon can find it) and people to pick me up and snacks for after are blown astray. They have to be reassembled, because if you don’t bring someone to pick you up in the middle of the day on some random weekday that keeps changing, they’ll cancel your surgery and then reschedule it probably seventeen more times. So at each cancellation, you have to figure out who can bring you, who can sit with you, who can pick you up.

This is one of the worst parts of cancer, one of the parts that rips the dignity associated with being able to take care of oneself right out of your hands, one that dangles your independence just out of reach and laughs when you realize you’ll never quite trust your easy independence as you did before. And so I was worried.

One friend- the best local friend- could do the original date but not the changed date, and then not the changed the second time date even though it was back to the original because it was at the last second. Another friend was missing that and needing to do this. Each time you have to ask, it feels a little more like a cheese grater running across your elbows, and you know you are a little bit more and more like that red tiliche flapping in the wind, hoping someone will catch you and ground you but not really sure anyone will. So we got it all set up for the second date, with Sammy dropping me off then heading to work, another buddy hanging around, and my mentor picking me up. And then the date changed with less than twenty four hours to the new surgery date: tomorrow.

Tiliche. Again. That day X doesn’t have a car, Y has a meeting, Z can try and move stuff around…. everyone wants to help, but the metaphorical cheese grater is still rubbing along my elbows, and only mine. And truly, I hate asking. It’s exhausting. It’s annoying. It’s not me. It’s risky, because people can and sometimes have to say no. I’m the only one who’s deck of playing cards doesn’t include no, the only one, who, when asked “Can we reschedule your surgery for tomorrow, be here at 6:30 am?” can only really answer, “Yes, doctor. I’ll be there,” though I’m thinking “But I have no idea how.”

But it worked. Sam is dropping me off. A cancer buddy is dropping by to crack bad jokes while we wait. A friend who called to say hi today asked if it would be helpful for her to swing by and see me while I wait in the morning. I said yes. And yoga J is picking me up. It takes a freaking village to have cancer, and it requires an ever-expanding village, because people in the village get tired. The person at the center of the village gets tired, too, but the cancer treadmill doesn’t stop, it just slows when “has cancer” morphs into “had cancer.”

So I’m grateful for the village, the one that is always expanding with new twitter buddies and friends to share wigs with, and the one I’ve had since before cancer, and all of them that make sure everything works out, even when asking for help feels like elbows on a cheese grater, even when needing to depend on someone feels like a tiliche in the whipping wind. Next time I know someone who has cancer, I’m going to make sure to check in with them about pick-ups and appointment buddies. Oh wait, I know tons of people with cancer. I’m going to text them just as soon as the pain meds wear off and I’m allowed to drive again.

Tiliches, cheese graters, community. We need each other. Tonight, I am grateful.

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.

transitions

I’m not fond of transitions. I don’t like goodbyes, I like beginnings. I like the moment before a significant experience, the moment you jump with both feet into something new and meaty and full of possibility. I don’t like the moments before the moment when you jump, the time spent figuring out which way to jump or where to go or what’s next. And I certainly don’t like the moment where you pull yourself out of an experience and look behind you and say, well, that’s over. Of course, I’ve been looking forward to saying, “well, that’s over,” about cancer for so long now. I’m pulling myself out of this cancer but my body is so warped from swimming in the cancer-pool that I need to learn how to be in the world again.

Here I am, finding myself in the midst of a cancer-transition. I jumped into treatment terrified, but relieved to be surrounded by competent medical professionals and comforted  knowing that the cancer center a five minute bike ride from my apartment is state of the art.  Certainly, I still have treatment ahead of me- surgeries and hormone therapies and scans. But the chemotherapy is done. The most traumatic surgery went off with only a few hitches. And my hair is now half as long as my pinky fingernail, which is transition on two counts: both my hair and my nails are growing. That’s a step up from where we were a few months ago.

You know what’s weird right now? I miss my doctors. Badly. You see, when you pull yourself out of the most intensive part of cancer treatment, you vow never to take steroids again, like ever, but then you realize that those steroids were tied to seeing this phenomenal and cancer-destroying team. The oncologists probably tie the significant others of cancer patients for the people who most deeply understand what its like having cancer without actually having cancer. The cancer-doctors are the ones who deal directly with the magnitude of your cancer, they address the hardest parts, they say what few others can articulate, and they wage a battle in your body against that which is trying to kill you. Its no wonder we start to cling to them, the people who can tell us what our life and death chances are and can give us a plan to improve those odds. I was seeing them every single week, multiple times a week. The nurses were checking in about my writing and making guesses about which wig I’d be wearing. And now suddenly and without warning, I am only seeing them once or twice a month. Still way more doctors appointments than I’ve ever had before, but enough space in between them to need to look at my calender to know when my next appointment is. Doctors are comforting, especially in the face of cancer. They are doing something. The are fixing something. They are actively engaged in making you better. And so it follows that there is some separation anxiety, some wishing I was seeing them more often, a coveted sense of action that I get from their presence. Ah, transitions. Who would have thought this one would come with missing my medical team?

I do not miss the sheer exhaustion from chemo that had me sleeping fifteen hours a day, or the bone pain migrating from my femurs into my shoulders into my wrists. I do not miss only being able to eat frozen grapes and sourdough, and I do not miss the smell of antiseptic swabs cleaning my port. What I do miss is the way that dis/ease mapped onto my body, and the way that that very clear mapping could be dealt with by a team of doctors. The cancer was there and being dealt with in the form of bone pain, chemo, and neuropathy. The medical team was responding with pathology reviews, many bottles of pills, and very frequent appointments. Now, the physical manifestation is the brick on my chest, and the very short hair on my head, but the pain no longer maps onto being unwell, and nor does it correspond with weekly medical check-ins. It is of course the truth that there is little my medical team could do if I were to see them every week these days- they’ve done what they can. But there is a gap between the materiality of what they can do and the way believing something is being done is comforting- and now I must face the reality that they’ve done what they can. What is left behind is residual, invisible, aftermath.

And I am here, trying to get my bearings in a world that feels like its still swirling, trying to reconcile the cheers of “You’re so ok!” from those around me with the disaster zone that I inhabit. I hold dual spaces, contradictory spaces, one that is distraught and enraged and sad beyond words, and the other that you see, where everything is better. And so it goes. Another transition, here we are.

no malignancy detected

And that was that. Today cancer anticlimactically ended. Sorta. I find myself balanced on a ledge. I can see the abyss, a rock-climber who knows what its like to spiral through the air without ropes tied tight enough, without a visible safety net to secure the bottomless canyon. But we’re sitting on the ledge now. My legs are swinging over the edge, and I am looking out at the cancer canyon and gulping at the terror, the anger, and the good fortune that feels insanely uncertain, but which has delivered me to this ledge of post-mastectomy, post-chemo safety. From my ledge, I can survey the land. I can see my cancer-buddies who have backed away from the ledge, and who beckon me to join them, throwing rescue-rings and life jackets and whispering about the view from a vantage point where the ledge is not teeteringly close. And I also see my cancer-buddies still struggling to grab a-hold the rock-face. I want to throw a life-rope, but I don’t quite yet have my footing, and so I can only ask those far enough from the cliffs’ edge to make sure they throw ropes to my buddies trying to scramble up the slippery mountainside. I’m still trying to lasso something secure on this side of the cancer-cliff, something to hold me on the healthy side of the cliff, the side where hair grows and my biggest concern is whether my breasts are going to be the same size (and Dr. Yoga-Surgeon assures me, they will be, someday).

Yesterday I saw Dr. Yoga-Surgeon who, despite her training in surgical methods (generally also known as not warm-fuzzy methods) was a total force of nature in reassuring me that in fact, I’m going to be OK. That seems to be her mantra, “it’s going to be OK.” And she’s right. It is going to be OK. I think. She said it would be OK before the surgery, she said it would be OK the day of the surgery, she said it would be OK after the surgery. And apparently, the pathologist and my oncologist, Dr. G., agree. There is, after all, no detectable malignancy. The pathology of my 66 milligrams of breast tissue came back: clear. There was no residual malignancy. The nipple core read benign breast tissue. They could not find cancer in my 66 milligrams of breast tissue. I cannot explain the dizzying goodness of seeing the words no residual malignancy right above the line that reads: nipple core: benign breast tissue. It is definitely time to borrow the doctors’ belief in my ability to be OK. Until I can believe it too, I’ll borrow their belief in my being OK.

There is no test to know the future. No way to know what will happen. I know that. Dr. G. repeated it again and again today, and then told me to keep two filing cabinets in my brain, and to close the one filled with “I could have cancer again,” and leave the “I don’t have cancer anymore” cabinet wide open. The “I don’t have cancer anymore” cabinet is filled with ropes and knot-tying manuals and all kinds of tools to anchor myself into the cliff ledge, tools that I can use to feel secure even though a wind could still knock me over the edge. Tools that will help me grasp life  and love even when uncertainty is the name of the game, the air I breathe and the grittiness that seeps into my everyday plans.

The information came in a pathology report. Many have been asking me about this path report, expecting, I think, that I was on edge to hear the news. News is news is news. It’s cancer news. I was, actually, content to wait. I don’t know why. I wasn’t sitting on the edge of my chair. I wasn’t even expecting Dr. G. to have the report today: I expected her to say we would schedule and appointment to review my pathology in a few weeks. It seemed like the information would come as it should, in its own time. And today was its time, and it was absolutely anticlimactic. Nothing in there, she said. Could mean that the ductal carcinoma in situ found at the edges of my lumpectomy was never really the early stage cancer they thought it was; or it could mean that the chemo erradicated whatever DCIS was at the edges; or it could mean the pathologist just f*cked up and missed a spot of DCIS. Who knows, Dr. G. mused. But it doesn’t matter. All that matters is there’s nothing in the tissue they removed. And that’s what we’ve got to live with, to find comfort in, to move forward from.So now what? Mammograms and MRIs, every year. Blood tests. Oncologist visits whenever there’s an ache or pain. Waiting. The risk of recurrence goes down. In ten years. In ten years. In TEN years.

Doesn’t it seem like there should be a bell ringing? A cymbal clanging? A definitive sense of OVER? But there isn’t. There can’t be. We all hope I’m in the 80% of patients who are just fine five years after diagnosis. And we’ll only know as time passes. And so tonight, we celebrate this muted, awkward news. It’s sparkly, but only faintly so, for we are too cautious to believe in much more than a little sparkle. It’s hopeful, but marred with life or death reality most newlyweds have no ability to engage. It’s a ledge. It’s tentative. It’s maybe being able to anchor in ground that is solid, but waiting for a foot to slip over the steep, slippery cliff.

And now, it’s about convincing myself. I don’t have cancer anymore. Maybe we should take on the summer-camp methodology. It goes like this: I sing a line, you sing a line back. You ready?

I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t

Maybe if enough of us say it all at once, if we fling our windows open and scream it at the full moon, if we soak up the summer sun and repeat after me, maybe I can start to believe it’s not only a fairytale. Maybe I can borrow enough belief from Dr. G and Dr. Yoga-Surgeon to convince myself I’ll be OK. Maybe we can start to live the life again where the cancer-free fairytale becomes real. Maybe.