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.

 

 

 

 

 

 

moments

Sammy called me this morning, frantic. The car was missing. Last night, I parked it on the corner. This morning, it was gone. He needed to go to work. How had our one-year old Prius vanished? We had four phone calls in a five minute period. All four were haphazard, fragmented, incomplete. I straddled my bike on the corner of Broadway and Ash, and dialed the impound lot. Sammy called back. I disconnected the impound lot. No car, frantic Sammy on the line. I was the one who used the car last. Where was it?

You know that kind of moment? Frantic, scared, incredulous, the moment when you need the world to stop so you can right everything immediately before you lost your brand new car right when you have a seventeen page to-do list? Cancer is like that, but the moment doesn’t right itself. Instead the world spins in slow-motion while you stand there and get dizzingly sick from chemo, and you are trying to hear but you are too tired, and you are straddling your bike  but you can’t hold on because your hands are swollen as f*ck and tender and blistering, and there is someone offering you three different flavors of a re-hydration drink but you can’t quite reach them, and your pounding heart is seventeen hundred times louder than the very busy intersection. The moment lasts six months.

Then, after being in this moment for six months, you can clip your helmet back on and start peddling, and at least get to the next intersection, where the crossing guard is Dr. Yoga-Surgeon. It will probably be the worst intersection because it is the intersection at which you will volunteer your arm to a nurse who will wiggle a needle into your vein even though you detest needles, and you will wake up hours later after Dr. Yoga-Surgeon amputates a body part that is intimately a part of how you understand your entire way of being in the world. Dr. Yoga-Surgeon will leave that body part in a specimen jar in a drawer at the cancer agency and it will never feel pleasure, it will never go topless in the sunshine, it will never overflow out of a push-up bra, it will never be whistled at by an inappropriate someone, it will never feed a baby, it will never bounce around in a built-in-bra tank top, it will never shimmy in between your shoulders (ok it never did that anyway, but now it really won’t). It will never do those things ever again because it will be in a specimen jar in formaldehyde at the cancer agency and the top of the jar will probably gather dust as it sits in its spot on a shelf with all the other cancerous, amputated breasts who’s owners traveled this particular and harrowing path.

This intersection will be worse, but before you even get there you find yourself weaving through a gauntlet someone called a street. It is a gauntlet. Broken glass pops your tires. You weave through cars and you carry in your backpack a prescription for a medication that will cause false menopause and block all estrogen in your body, all folded up with your list of dissertation references that somehow still has a thousand errors. The medicine will make your bones weak and your belly flabby. You haven’t fallen off your bike in years, but you skin your knees and your chin and your left elbow when you fall off again and again and again and again. Even though all the knobby points of your body are bloodied from the number of times they have scraped asphalt, there’s some really warped cheerleaders silently screaming about positivity, and you could care less because you think they must be dead cheerleaders come back from the worst Halloween you can remember. Their costumes are terrible. The phone rings, and you ride one-handed while listening to your doctors’ secretary explain something that makes no sense. You wonder about gender and why you never realized how much you loved your breasts. You pause on the curb to download medical articles so you can explain to your doctors’ secretary, so she can explain to your doctor, why she makes no sense. The clasp on your helmet clatters to the ground and that’s the loudest sound you hear even though there are trucks blowing carcinogens into a cloud right in front of you. You begin emailing with your cancer-buddy about the media-archive-storytelling-young-cancer-project you need to do more than you need to breathe, and in rapid-fire style you hammer out a goal broader than the sky itself. What kind of activism would it take, you wonder, to throw the trucks that make clouds of carcinogens off the edge of the world? The amputation intersection is a mirage in the distance, and you cannot tell how close or how far the amputation intersection is from where you straddle your bike, you only know that like you desperately need to start your media-archive-storytelling-young-cancer-project, you  desperately need Dr. Yoga-Surgeon’s secretary to change the number of days until the mirage is closer.  It would be ironic, asking her to move the mirage, if you had time to think about what a mirage is. But meaning is lost, vocabulary woefully insufficient, language has never seemed more destitute. The feminists/poststructuralists/queer theorists/critical decolonial thought producers had better get to making up some words with slashes and dashes and lots of letters in between, new words, words we’ve never heard of, sounds that have yet to roll around in our mouths, but probably we will also have to make up a whole new alphabet for this one. Language fails. Metaphor fails. Mirage fails. This is these days between chemo and surgery. The only respite is yoga. The bike isn’t allowed inside the yoga studio, but Dr. Yoga-Surgeon is there, and so you know it’s not a dream.

In case you were wondering, the car was moved, towed to the other side of the street. Thank you, tow-truck, for not towing to the impound lot. I left it too close to the driveway. That worked out a little better than cancer.

 

hair

Hair is a feminist issue. That’s a no-brainer. There are fiery feminist discussions over all kinds of body hair. Today though, today for me it’s just about the hair that grows atop my head.

It was long. And wavy-ish. Curly-ish. Frizzy-ish.

Hair made me distinguishable: I am a redhead. I identify with other redheads, but sometimes if there’s too many redheads around, I’m like— dude, what? I’m supposed to be unique and special! There’s lots of my heroes who are or who were redheads, like Eve Sedgwick and Pippi Longstocking.

My hair has been short before, but not too short. More like, pixie-short. Today I had ten inches cut off, and I’ll bring them to this woman in Vancouver who makes free wigs for kids with cancer.

Long, strawberry blonde hair is part of how I see myself. I love piling it on top of my head when I am working, and the bangs have certainly been a hair adventure. Long hair is part of what screams girly about me. This time, I was shooting for it to get down to my butt. Alas, no more. Of course, long hair isn’t all peachy. It gets in the way at yoga, it takes a lot of expensive shampoo to wash, and it frizzes out like you wouldn’t imagine.

The plan is to shave my head shortly, before I begin chemo. I just don’t want to deal with hair falling out. It sounds simply horrendous to me, to go around the house, hairs floating off your head to the ground. I know it isn’t exactly like that, but its close enough. More and more hair coming out each time you run your fingers through your hair; more and more strands on the pillow in the morning; bigger, thicker clumps gathering around the shower drain. No thanks. I’ll go bald on my own terms.

I’ve thought about this a fair amount. Women with shaved heads basically always look like bad-asses. They don’t even have to do anything, except be in the world with a shaved head, and automatically they are read as bad-ass. This afternoon, I said to my bestie, “Women with shaved heads—” and she finished my sentence, “–are so intimidating. Scary. Like don’t mess with them” I think the woman with shaved head equals total bad-ass is about women saying ‘Fuck You’ to the patriarchy, as in, who cares about my long tresses, don’t mess with me. It’s being aggressive, being a bad-ass, and you all know how I love aggressive. Its kind of awesome.

There’s really not a whole wide array of choices here for me to pick from, in terms of how I’m going to respond to this. People keep saying things like “you’re so brave,” in its various iterations, and yet— I have not done anything, folks. In fact, I haven’t even survived anything except more biopsies than anyone should ever have and some other random, weird procedures. I didn’t go running into a burning building to save someone, or make a speech to thousands or foster world peace, or lift a car off someone pinned underneath, or bunji-jump off a cliff. I just went to the doctor one day, and came out the other side with breast cancer. So, given that there are not endless choices for how to handle this, bad-ass with a shaved head seems like a good-enough bet, especially so because I don’t have to do anything to be read as a bad-ass once I have a shaved head, I just have to take my hat off. I could stand being treated like a bad-ass. It certainly feels more accurate than “brave.”

And if I don’t want to be the badass girl with a shaved head, I can always wear this long, perfectly curled dark red wig. Because you know, a girl needs perfectly curled hair at least sometime in life. Chemo seems like a good time. My real hair will never curl so nicely.

This slideshow requires JavaScript.

So, I’ve taken another step towards badass/intimidating/awesome on the hair spectrum today. This morning I called and made an appointment at a salon on Main. I knew it was the right place when I walked in, my hair matted under a beanie because I haven’t been able to show-show (as in, shower) since I had my Epic Day of Small Surgeries on Friday. I can’t yet get the port incision wet. Yah, that little collarbone incision is the top incision from the port. I have another, large one and a bump under which a plastic port sits a few inches below. Bionic woman, I am. Since my veins roll and retreat deep into my arms each time they try to give me an IV or draw blood, this thing is going to save us a lot of heartache. It hurt like crazy after they put it in, but it’s getting better little by little.

So, the hair is asymetrical. It’s fun. I think it will be easy to take care of, for the few days I will have it. The girl who cut is was just lovely- telling me about how her chemo clients come back with hair that is super curly. and giving me tips about short hair and buzz cuts and bald heads. I have no idea how it will hold up in yoga!

So, here we go. I start chemo in five days, and before then, I’ll shave this thing. Well, my friend C, who has a bad-ass haircut herself, will shave it. I’m slightly concerned I may have a blockhead, because I recall my brother and father having big square heads when they shaved them in the summertime. I’ve been assured by two hair professionals- the wig-maker and today’s hairdresser, that it seems I have an exceptionally round head. Which is good.

Speaking of hair, there’s a few other things that happened with hair this week. For starters, I shaved my legs, got my hair all rolled up like they did in the 50’s, and took some fun pinups! I mean, a girl must do something when she’s gonna chop her long red locks and start chemo and march forward toward mastectomy. We did all kinds of outfits, but here’s an (unedited) preview.

This slideshow requires JavaScript.

learning to do cancer from fb

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

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

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

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

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

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

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

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

welcome to cancerland.

This story begins in late August. With a lump. And then what I thought was a brief tour in cancerland, a world in which I considered myself an imposter, a world I didn’t belong in. From August until Halloween, there were doctor appointments and biopsies and ultrasounds and mammograms. And each time, at every turn in the road the doctors, the nurses, even Dr. Google and also Dr. GoogleScholar assured me that I didn’t have cancer.

I had something called an atypical papillary lesion, which is precancerous. They always remove them because a biopsy is not very reliable for these lumps. What stuck out most was that in one article I read about these things, it said they mostly happen to “women in their 8th decade.” Well, I did this 5 decades early. I was the precocious barer of a breast with an atypical papillary lesion.

Dr. D., my very matter-of-fact and so-sciencey surgeon would remove it in the beginning of October. I had a big giant bandage and I ate a lot of ice cream. My BFF Megs came to visit. I even started to like the thin, braid-like scar.

Fast-forward 3 weeks to Halloween.

The UBC doc- the one from student health services who I saw initially called in the morning. “You need to come in for the results,” she began. I sat on the living room floor, balancing little Piolin, a 3-week old bottle feeding kitten I’m fostering for VOKRA on my knee, and said to her in a firm voice, “I don’t have time. I’m in the middle of my dissertation. Please tell me over the phone.” She stuttered. “Well, it’s positive result…” She couldn’t really say it, so I said, “So, I have cancer.” And she said, “Well, yes I’m afraid it’s positive…” She’d give me the path report if I came in. We finished feeding Piolin, and Sammy and I headed to UBC Student Health. There was lots of tears en route. To her credit, the doc saw us immediately, no appointment necessary. Not so much to her credit, she didn’t know what the abbreviations meant, and she actually pulled up Google when I asked what the significance of “Grade 3” was. OMG.

Since she clearly didn’t have much more info, we headed out. Sammy had to work, so I dropped him off at Mozart, and I went right to the only person I know who’s had breast cancer. That’d be my totally formidable dissertation supervisor, M. At least she knew what Grade 3 was- it’s how WILD it is. There’s many ways to measure a tumor, like literally by size, and how advanced it is in the body, and also, there’s the grade, being how WILD it is. Mine is wild. The most wild. It seems kind of fitting. I’ve never liked tame things much.

My surgeon Dr. D. was suprised. Surgeons are different here in Canada. Less glamorous. There’s no secretary behind a sliding glass window or anything like that, just a receptionist with a partition hiding her partially from the waiting room. The surgeon who did my ankle surgery back in NYC was fancy and American. This one is distinctly Canadian. And you can tell from the office. It’s a nice office, but it’s just any old office. It’s not, in my American opinion, very surgeon-y.

This morning I had an MRI. I am so grateful it was this morning, and that Dr. D., who is a total bad-ass surgeon, convinced the radiologist to let me have it. Dr. H, the radiologist, wanted to wait THREE MORE WEEKS since I so recently had the other surgery. But Dr. D over there doesn’t back down, and convinced her to do the MRI anyway. I was even more delighted to have this Canadian surgeon with the Canadian offices when I asked when I’d get the MRI results. The nurse said maybe 2 weeks, I said that wouldn’t work very well for me, could they be rushed? (This has worked for me in the past…) The nurse asked who the surgeon was, and when I said it was Dr. D., she said, “Oh, she’ll get them. Dr. D is very aggressive.” At which point I wanted to jump up and down. I like aggressive. It’s normally a word that people use to tell me to calm down –ie., you’re being too aggressive, or don’t be so aggressive– but I’ve always taken it to be a buzz word for “awesome feminist is doing something awesome and patriarchy is trying to prevent it by saying she’s aggressive.” I’ve always kind of loved aggressive. It has for so long, felt so right, being aggressive. My cancer’s aggressive, so I need an aggressive surgeon. The MRI will help us know what kind of aggressive surgery I need from the aggressive surgeon for the aggressive cancer. Cancerland is aggressive.

Aggressive cancerland kind of feels like being underwater and not knowing which way is up, except that the water isn’t silky and smooth and cool, it feels like rough sandpaper. I don’t know where this journey will take us, but it’s certainly taken us right to a place of not-knowing-which-way-is-up.  It’s taken us to WholeFoods where our all-organic grocery bill rapidly expanded, because we certainly don’t need anymore toxins round this house. It’s taken us to consider adopting this little bottle feeding kitten, because he’s a survivor. It’s taken us to long nights reading everything we can find in English and in Spanish,  and to long phone calls and high phone bills. I don’t know where it will take us next, but it will be documented, on this blog.

And one more thing for all those Americans doubting socialized health care? It is the most incredible thing. Ever.