Over-Acheiving Embryos

Remember when we made zombie babies? Those were the really weird times, when we raced to and fro doctors appointments, when we had so many doctors appointments we started eating out all the time because there was literally, no time to cook and we were never home anyway. Back when we made the zombie-babies, I wasn’t sure we’d ever get to use them, because at every fork in the road someone reminded me cancer could kill me. Zombie Babies is really just an affectionate term for the embryos we froze, embryos mixed in a petri dish from my eggs and Sam’s sperm. Embryos mixed, watched, cared for, and then… frozen. Placed on ice. Neither dead nor alive- but rather, frozen. And that is where the term zombie babies came from.

Last fall, my oncologist Dr. G said I could “think about” surrogacy, but definitely not “think about” pregnancy, yet. So I thought for about twenty five seconds, and then we moved forward. We found a surrogate. Our families helped us figure out how to fund this ridiculously expensive enterprise. And on December 4th, we picked up Angela, our perfect-fit surrogate, from the train station and the two of us donned little blue caps on our heads, and Sam sat in the waiting room while they sucked up two little embryos out of the petri dish, and carefully placed them in her uterus. One high quality embryo, one weaker embryo- insurance, if you will, in case it didn’t work, since the success rates are something like 60%.

But it did work. She sent me texts with the double lines on the pee-stick, and we slowly made our way to the blood test, and that was positive too. And then we were at the first ultrasound, and Sam was waiting in the waiting room, and Angela and I were staring at the screen, where there was a blob, a blob with a heat beat.

A blob with a heart beat, made from a zombie baby! We both smiled and she squeezed my hand and I could hardly believe it. As the doctor  continued to look at our tiny blob with the flashing heartbeat, another blob appeared on the screen.

“That is just an empty sac,” the doctor explained. “See?” He moved the ultrasound to show us the empty sac keeping the blob with the heart beat company.

Except the empty sac had a heart beat. It was not an empty sac at all.

“Well look at that,” the doctor commented, “appears to be twins.”

I’m sure my eyes got as wide as plates. Angela’s did. It was a though we had no other words, no other words except, “OH MY GOD, OH MY GOD, OH MY GOD,” which we repeated to each other a lot of times. Because what else can you say when the doctor tells you your blob with the heartbeat in someone else’s uterus has a sibling blob with a heart beat, also in someone else’s uterus?

Sam looked so patient, sitting in the waiting room. I thrust the pictures into his hand. “Count them!” He looked. He squinted. He looked at our faces, and the paper, back and fourth. And his eyes were as big as plates. “There’s two.”

And so it went. Lots of text messages about, OHMYGOD, TWINS. Lots of excitement. Double. There was a 5-10% chance we would get twins, and we knew it. We just thought we’d be in the 90%! Though, as my mother has pointed out, why would I ever think that, based on what reality? I’ve never been in the 90%, and I’ve never wanted to be in the 90% (except when I got cancer at 29, then I wanted to be on the other side of the statistic).

So, twins, because our embryos are overachieving just like us, and they survived the odds and hung together. So, twins.

We’re nearly 19 weeks in now, and though I’m always shocked when its still twins, I hear they will still be twins when they are born, too. We are expecting twins! In August! Like, TWO BABIES. We are expecting TWO BABIES. They’re all cozied up in the belly of this incredible woman who lives the good life on Salt Spring, a surrogate-mama who did the most radical thing for us. What an absolutely incredible thing that women can do for each other, lending a uterus, taking care of tiny babies, babies the size of a dragon fruit, because she wants to, because she loves her own children madly and wanted to help someone out, because she figured out, that somewhere deep inside of her it was the right thing for her to do. Somehow, we found her. It’s been so easy since we have. She’s so kind. She’s so present. She’s taking such good care of those two babies, making sure they grow strong and healthy. She knows so much about pregnancy and childbirth, and I can’t imagine anyone else doing this for us. Somehow, we found each other in the world, and we connected, and she’s growing the most precious of cargo inside her body, as a gift to us.

And you know what else? They’re girls! Twin girls! Cue again the series of OHMYGODOHMYGODOHMYGOD! They’re girls who can be sugar and spice and everything nice, and girls who can be bad-ass and fiery and full of sass. They’re GIRLS! We’re having TWIN GIRLS! I’ve already researched the feminist, queer, multilingual books that will be on their shelves. Because we might not be able to control the onslaught of pink (and whatever, pink rocks) but we can definitely control the exposure to stories that are not confined by racist, sexist, heteronormative patriarchal capitalism. There’s a story there, about an Eric Carle book I tried to correct with white-out until I realized I’d have to white out the entire story, but that’s for another day. For today, the news is…

WE’RE EXPECTING TWIN BABY GIRLS!

 

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?

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.

Good Bye Mama Bear, Fare Well.

In the golden days of summer, I met her. “I’m in with the young ones! They think I’m young,” she cried out as she introduced herself. Only minutes into our meeting at the Callanish retreat, she lifted her t-shirt to show me her two round, perfectly matched nipple-less boobs. She’d been sunbathing topless, she told me, sunbathing until they were the perfect shade of golden. I knew right away, she’d be the type with the flow-y skirts, clothing printed in brilliant colours, and charms hanging from around her neck. She was the only one who, though closer to my mother in age than to me, climbed into the hot tub with Ashley and I to stargaze and imagine, to compare cancer notes and tell stories of oncologists and side effects.

Char wiggled her way right into my heart. Maybe it was the steaming coffee she brewed every morning, just as I was waking up. Maybe it was the sliced fruit she left for Ashley and I as we rushed in the morning. Maybe it was the late nights she stayed with me in the art studio. Maybe it was the advice to always bring my inside voice with me on life adventures. Maybe it was her steady belief in the goodness of the world. Maybe it was her ability to disrupt the age barrier. Maybe it was the peace charm she wore around her neck, the charm she showed me as she told me the story of walking on the beach, hoping for peace, when a plastic peace trinket appeared among the rocks at her feet. Maybe it was the way she mothered me, and everyone else, too. Whatever it was, she climbed into my heart and set up camp. In her, I could see who I wanted to be when I was all grown up (even though we all not know that’s never going to happen!).

It was a hot afternoon and I was feeling exhausted and sad for all cancer has taken, for all the losses, for all the forever changes. She came and sat on the corner of my bed, where I was curled up amid the pillows. She rubbed my back and wiped my tears and told me it was OK I didn’t have babies yet, and she told me she knew I’d be a mama someday. She cuddled into the pillows with me and the sunlight streamed into the bedroom and kept us warm. We talked until the words ran out, and after some silence, we laughed and laughed. We laughed at how she heard me singing in the creek, when I thought no one was listening. We laughed at our mismatched boobs, hers nipple-less and mine full of corners as though someone shoved a book under there. We just laughed. And she mothered.

Char cared. She showed me how to care, how to care in the details and in the fleeting moments. Her presence was warm, full of love and laughter, replete with sass and spice. Goodnight, sweethearts, she called as we climbed into bed, our fingers still stained from playing in the art studio. Good morning, coffee is ready, she called up the stairs, always awake first and taking in the morning light from the porch. She evened out the little duo I formed with Ashley, the third point to our little triangle, the other person to whom I felt most connected. Mama Bear, we called her. Mama Bear, she was. We emailed. Here and there. This and that. Always lots of explanation points, smileys, words laced with sarcasm but somehow also full of warmth.

Once she convinced me to go with her to a Callanish movement and meditation event. I went because she was going, and because my recent surgery banned me from Bikram. It was January, and she was exuberant. She asked me a hundred questions, and listened so carefully to the stories I told her. I shared the most precious of news- news that is not yet public- and she was ecstatic. For me. So sick, so ill, and still her grin reached from ear to ear, and she hugged me hard and close. Mama Bear, indeed.

I found out today. The Art Therapist Who Presides Over Acrylics and Feathers and Sand told me. Better than finding out when the offensive email shows up in my gmail, bearing the saddest of news. Char is gone. She died at home. Breast cancer took her. She was not old enough to die, and we the people of the world, we were not old enough to lose her. The gap is wide, the ache in our hearts, the enormous hole she left in the world that will never be quite the same again. And this afternoon I rode my bike, and the tears fell into the wind, and I missed her, and I wished I’d visited her, and wished she told me, in those emails even just weeks ago, how hard it was getting. I rode and I rode, down to the ocean and along the water, and it was raining.

Char, I promise to take my inside voice, I promise to sing in the creeks, I promise to let the world deliver tiny plastic peace charms just when I need them. I am so sorry Char, I am sorry you left to soon, sorry it hurt, sorry your children will forever miss their mom, sorry we can’t have tea again, sorry it happened, sorry the world continues to spin without you. That spin without you is unimaginable, unthinkable, unbelievable. I’m so sorry. I made you this little video, today when I got home from biking. I changed into sweats and dumped out the coffee beans, and it smelled like you in the mornings, the early mornings, making coffee for us even though you didn’t have to, caring so deeply even when you, too, came to the retreat to be cared for. Your care was so healing. Caring about you too, was so healing. Our friendship was so healing, for me, and I’m so sorry you are gone now, gone forever. This is for you, with so much love, from me. Goodbye, Mama Bear, fare well, friend. I will think of you often. Love you.

Please help us make BREAST CANCER PINK: THE VIDEO

Dear family and friends,

First of all, THANK YOU for helping us get our project Breast Cancer Pink: The Video off the ground! Your donations and your help getting the word out has been phenomenal. We’ve got ten days left, and we need to raise $2,600 more! As we begin this last push towards our funding goal, I wanted to share a little bit about why this song and the music video we hope to make are so important to me, even though I have already completed all of my cancer treatment.

On Friday morning, I put on my headphones. And then I listened on repeat, to a very early version of Breast Cancer Pink. It’s not the gorgeous professional version I normally listen to- it’s an acoustic version, a version in which I can hear Kate’s little birds tweeting in the background. It’s a version that is comforting because it’s so not produced, and it’s so imperfect, and it’s so intimate. When Kate and I wrote the song, I felt so very visible- finally, someone was honoring my experience enough to really listen and make something beautiful with me, for me. Each time I listen to the song, those feelings flood my body, and I know that my story matters, and I know that people care, and I know that I’m gonna be fine. So it’s no wonder, that when I feel a little cancer-lonely, or when the anxiety about getting cancer again surfaces, or when I have to go to an appointment in the building that smells like chemo, I need the song to drown out all other sounds, and I need the song to remind me I am more than just another cancerous body.

I’ve been through so many procedures now, that even walking through the doors of the cancer agency causes my heart to squeeze and my toes to curl. I can immediately smell the hand sanitizer, which reeks of the alcohol swabs they used to clean my port before each chemo. And then they hand me one of those blue gowns, with the little ties on the side, and anyone who walks into the room is allowed to fling it open and examine my breasts. Most of the time, they don’t even ask. Given that this is the world one inhabits after successful cancer treatment, you might be able to imagine just how badly I need Breast Cancer Pink, blaring in my headphones, and the way it makes me feel wrapped up and warm, real and acknowledged, visible and heard.

After my mastectomy last May, I was declared cancer free. Suddenly, there were no doctors actively involved in getting rid of my cancer, and it was terrifying to be out of care.  What if something happened? What if it came back, and they didn’t even know until it was all over my body? What if there were errant cells lurking in my nodes or other tissue, just waiting to grow enough to be called a recurrence? What if I had a recurrence, and died? That was all I thought about.

I know now that it’s better for me to focus intensely on the present, and what is true right now. I can’t get too far ahead into the future, because then I become plagued with worry. A cancer friend said to me yesterday, “I just can’t imagine retiring or getting really old or anything too far into the future.” I’ll always live with the fear of recurrence.  This last week, I had to stare down that fear, look deeply into her eyes and acknowledge she is real. You see, Friday I showed up at the clinic to have X-Rays of my sternum and ribcage. In an attempt to discern what it is that is making my sternum painful, and why I seem to have random, shooting pain in the center of my chest bone, the doctor ordered X-Rays. I plugged the song into my headphones and pulled on the blue gown. I worried that the X-Ray radiation would cause cancer in my remaining breast. I held my breath as directed, the song in my ear-buds, and wondered how long it would take for an answer. How long until I knew, cancer or no cancer? With the song blaring in my ears, I took a deep breath, left the X-Ray area and got dressed. I let the song remind me that I have an incredible community, that I am loved and heard and visible, and that ultimately, it’s gonna be fine.

So you can see, how wildly important the song is to me, and also, to other folks dealing with breast cancer. It allows me (and others, I hope) to see ourselves as something more than a pink ribbon or a sad story. It sustains a hope for something other than what is- a hope that we can really reckon with the toxic environment that is linked to breast cancer, and a hope that we can acknowledge each others’ experiences of the world with care, compassion, and kindness. I am so incredibly excited to make the video and share it with all of you and every person I know who is dealing with cancer.

So many of you have so generously donated to our Kickstarter campaign to make this possible- and I want to reach through my computer screen and say THANK YOU, and give you a big, giant, warm hug. I want you to know how much your generosity means to both Kate and me.  We’ve raised $3,925 out of $6,600 and we still need to raise $2,675 more dollars to make this video-   and we’ve got ten days to do it! If we don’t reach our goal of $6,600 by Wednesday, March 18th at 5pm, we won’t receive any of the funds already earmarked for the project, that is, all of the money donated so far will get refunded to the people who have pledged, and the project won’t happen….that’s how Kickstarter works. So, if you haven’t already donated, please donate today! Every single cent counts! Can you help us by sharing, urging your friends and family to donate, or sending out a link to the Kickstarter page to your networks?

Here is the link: https://www.kickstarter.com/projects/1864457835/breast-cancer-pink-the-music-video. If the link doesn’t work, simply google “breast cancer pink kickstarter” and it will come up!

So much love,

Chelsey

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….

The things our friends teach us

I woke up thinking about the film this morning. Fighting a desire to step into a world where I could be fantastic, a desire to ease into telling cancer simply and hopefully, a desire to be as at ease as they seemed yesterday. Sometimes I feel kind of lonely over here, because I don’t know how to do that, I don’t know how to perform the way everyone wants me to about cancer, the words feel foreign in my mouth. Sometimes I feel like I’m looking in, even unto the cancer world, an outsider still, unable to just be like everyone else who is so happy. 

I talked a lot of theory today, and I found myself eating lunch with three of my absolute favourite people, a spontaneous gathering on a warm spring day, and the love was plentiful among us. That’s pretty great, to look around and see people you love eating some random food you threw together. I want more of that. As the afternoon wore on, I worked on her scholarly project with my friend Kate, the singer-songwriter of the most infamous song. Again, so fortunate I felt to be able to think about ideas and theories and project and justice and change and art- because I have a friend who is into those things and writing on them, and wanted some idea-organizing help. I mean, really, who gets to do that? It’s awesome. As the theories came together and the methodologies settled and some of the decisions about what to include became clear, we shifted topics to the film.

I can’t be like them, I complained, tears stinging the backs of my eyes. I am being too critical, I worried, it’s not enough, it’s too much, they tell these stories and I feel so outside them, and I only ever want to listen to Breast Cancer Pink, and I feel so lonely. Maybe I should be more like them. There’s no one here except me. 

You’re not alone, actually. You know, she reminded me, that people love this song. They tell you. But I know it’s lonely. It’s lonely for me to sing the kind of songs I sing, too, it’s lonely when people don’t speak their truths. 

They do love The Song. People tell me all the time. But I still feel alone. Alone in anger about breast cancer, even if I don’t have enough fingers to count the cancer buddies who feel angry, too. Alone when they say cancer was a blessing, a gift.

I do have multiple, many, hundreds of gifts in my life. I have friends who show up to have lunch. I have people who offer to make me boob casts. I have buddies who come to appointments, folks who will listen for hours on the phone, friends who will listen and listen and listen, and who will even risk saying the wrong thing to say something at all. Those are blessings. They are gifts. They are awesome things. I have so much gratitude for the amazing community of people I am fortunate to call my friends and family.

But they are not cancer. Cancer is ugly. Cancer is IVs. Cancer is death. Cancer is fear. Cancer is hand sanitizer smell. Cancer is sad.

Today, Kate reminded me it’s only a conflation. There can be beauty alongside cancer. There can be friends and friendships and songs alongside cancer, and I can untangle the knot of “cancer is a gift,” and discover that I also have gifts, but I know they are born of a different world than cancer, made of something not cancer. Certainly, they came out in full force when I had cancer- they brought movies and g-chatted regularly and made dinners and did all kinds of loving. But I can’t conflate them with cancer. I need those friends, those gifts unto my world, those moments of love and kindness- I need them especially, in cancer. It seems like a simple thing, to be able to untangle “cancer is a gift,” and understand the gifts of love alongside cancer, gifts that are born of relationships we are grateful for, but gifts that might have accompanied us in life even if there was no cancer. I need to separate, to be clear, to untangle. Otherwise the stories feel so unwieldy, the ones I hear where cancer is a gift. They feel like chain necklaces all tangled up and unwearable, chain necklaces that when you tug on them, become only more tangled, more tightly wound, more confusing.

I can have both. Both! I need both. I need to hold onto cancer as angry, ugly, mean, and horrible. I need also to hold on to the beautiful friendships around me, the communities built on love, the extraordinary caring. I can have both! Both! I need to be able to tell the stories that are inside of my belly, and those stories are different than the stories I see around me, and that’s OK. I can tell them the ways I need to, in writing and in videos and in song and in little projects that come to me late at night when I cannot sleep. Kate tells stories that are not the stories everyone wants to hear, and it’s literally impossible not to listen to. Tonight, I am listening to her sing her other songs, just once through, before I put Breast Cancer Pink back on repeat. It’s brave, we could say. Or we could just call it honest. Knowing what’s in the pit of your own belly and letting it out. We could just say they are stories that couldn’t live without being told, and that she told them because she had too.

It’s lonely to be different. But there’s not really another way to be. 

It seems like a lesson you learn in the second grade. But really all the lessons, all the things about life, we’re just re-learning them, again and again, in different situations and with new people, in diverse communities and across random contexts. Behind the emotions and the fear and the laughter are really just lessons we learn over and over again, and they are the simplest ones. Be yourself. It’s hard sometimes. It’s lonely but what else is there?

Be yourself. It’s hard sometimes. It’s lonely but what else is there? Really, do you want to be a soccer mom with an apron baking cookies and not thinking and not reading, and taking a dog with bows in its hair to visit chemotherapy patients, because it’s a good thing to do? Because that’s what the not-lonely option is. Coiffed hair and normativity. 

The shivers. There’s no way I can fit into that. It’s not to pass judgement. Can I not want something, without judging? It’s just to say, there’s more than just happy. There’s lots of rich emotions, and lots of people to share them with, and diverse communities and people who come over for lunch. There’s little yarn worry dolls made carefully for friends and there’s dreams of big old houses and futures that are rich and full of love. And that vision has space for all kinds of stories, mine and others, told in song and in writing and in video and in the patterns of art projects.

That’s who I want to be. I want to live inside my own truth. I want to make things and write things and have time to make little sparkly things for the world, that make the world a little more… sparkly. I want to intervene and ride my bike in the sun and watch the ducks swim while I walk along the waters edge. I want to read books and try new recipes and love whole heartedly. I want to do things because I love them, because they are true for me, inside my body, today, now, always. I want to know I am moving forward in the world hopefully and in ways that only I can move forward in. You know sometimes, when you’re on your bike and its sunny and you’re going somewhere in the city, and you got some work in your panniers and you know it’s important work, and you know it’s work you care about and love, and you know you believe in it, a hundred times over? You know when you are on your bike and you can feel the wind running through your hair and you just know, you’re deciding things for you, and no one can take that away from you, because it’s so lodged so deeply inside your body no one could ever reach that deep inside of you and pull it out? That’s what I want, and I want it now, and I’m making it that way. That is all. So, that’s what I learned from my friend today. What’d your friend teach you today?

So, A Film.

So Callanish produced a film, about their retreats (one of which was so healing for me) and about six young women who have metastatic/recurrent cancer. Tonight, the film was screened. I went.

The film was beautiful. Shot in golden light. Edited carefully, with profiles of the young women portrayed with sunlight dancing on their cheeks and warm blurred moments and yellow daisies swaying in the wind and rose petals floating in a creek. The images were scrumptious, warm, and bathed in golden light. In many ways, these images reflected my own experience of the Callanish retreat: gorgeous, careful, golden, warm, full of heart.

The women told stories of times their doctors gave them weeks to live, they shared their decisions to get married and travel to India and do insane bike rides in the face of terminal diagnoses. They shared spirit, hope, and fears. They echoed the voices of other young adults I’ve known, and I felt many of their stories and worries and hopes deep inside my core. The film profiled a few of those professionals from Callanish who so beautifully receive spirits and bodies battered by cancer and who, through absolutely tender and amazing caregiving, heal the wounds the oncologists cannot see and awaken the souls of people who have been to hell and back. That part was so well-captured, and I could feel their care leaping out through the screen and enveloping us all. I know their care works, because it worked for me.

You know there’s a but coming though, don’t you? It’s a hesitant but. I don’t want to say anything critical about this wondrous place. I don’t want anyone to hear me utter a single word of not good-enough about these amazing people. But.

I could feel it in my chest, a tightening. I sat in a row of young adult cancer survivors, young people who have fast become close friends. We spent the afternoon together with lunch and lattes. We were stoic. Sometimes a tear escaped. Sometimes we held each others hands. Sometimes we nodded. Mostly we were stoic.

I could feel it in my belly, a stone sinking. This pain was real, but bathed in golden light. I yearned for sharp shadows and the harsh light of midday, for the hard angles of the sun that paint faces in black and white- angles and light that feel like cancer. I expected to see not only the loosening of the cancer knot wrapped around each person profiled- the loosening work so carefully done by Callanish- but also, how the knot was tied, how it was bound, how it left marks that yoga cannot soothe away. I know Callanish retreats are out-of-time, that they are out-of-the-rest-of-life, and I think that’s awesome and necessary. I wondered what it would look like to show the anger, to edit in the frustration, to account for the ongoing struggles around pain, medication, and loss. I know that the Callanish retreats are a sacred space that can expand to hold pain, ongoing struggle, and loss. Maybe Callanish retreats can hold so much pain because they are simply soaking in beauty.

But cancer isn’t all beautiful. It isn’t all retreat. And I think to really illuminate WHY that place must be, it needs to be grounded in what young adult cancer actually looks and feels like: grounded in veins that are totally shot from so many IVs, grounded in the humiliation of hair loss, grounded in feeling like the only one, grounded in a system built for older bodies, grounded in anger and pain and loathing and loneliness. Maybe some people know that, and maybe it doesn’t need to be explained and maybe it’s comforting and amazing for the audience to see the sacred space of healing. But I don’t know that people do know that. I actually think most people don’t know what cancer is like, and so they don’t get why the Callanish retreat space is so critical.

After the film, the six women talked about their experience. First, they introduced themselves and were asked to say a bit about how they are doing, now.

Every single woman smiled and said they were doing fantastically. Everyone used the word fantastic. Everyone. Each time, the feeling in my chest got tighter. My stomach flipped. Fantastic. Fantastic. I’m doing fantastic. I feel fantastic. Fantastic, fantastic, fantastic.

Come on.

But then I wondered what the other option was, sitting in front of a giant audience of people, everyone’s eyes on you. Is there discursive space to say anything after fantastic, after someone else has said fantastic? No one wants to be a killjoy. Fantastic. She’s fantastic. They’re fantastic.

It felt so out of synch with the sacred space for when things are not fantastic.

But really, what else can be said? How do you say, this sucks, to a group so large? How do you fail to respond to the question lobbed at cancer survivor after cancer survivor: “What did you learn?” How can you possibly speak anything but positive, happy cancer?

Do we even have the narrative building blocks to say anything but this story with a hopeful narrative arc, this story that resolves with defying the odds, this story that isn’t angry but is grateful, this story that isn’t crippling but is wings soaring? Isn’t it true, that we draw on the worlds we know to tell stories? Aren’t we just like children playing with building blocks, making castles out of squares and rectangles? What if the children need a lopsided octagon? What if their life feels more like a chartreuse squiggly oval, but they have to settle for a green rectangle instead, because the building blocks only come in rectangles and squares and primary colours?

Such are the building blocks of cancer storytelling. Those brilliant young women who shared their stories in the film got the standard set of building blocks, the same ones we all have: primary colours, shapes that fall easily into brick-like formations: squares, rectangles, and maybe a few long flat things. Maybe an octagon or a diamond. But those are the weirdest ones. Forget it if you want a chartreuse squiggly oval. Just forget it.

They were working with those discursive building blocks. But the restlessness in my legs and the ache in my chest and the knot in my belly, those feelings were chartreuse, squiggly, and oval. Anger has no place in these building blocks. There are not feminist building blocks. There are not queer building blocks. There are not sad building blocks. These are building blocks meant for public consumption. Building blocks palatable to the general public. These building blocks are language itself.

Sure, there can be anger at Callanish, because they’ve tried so beautifully to rid the space of discursive building blocks. You don’t have to talk. You don’t have to say anything. And sometimes cancer takes all the words and shoves them off the side of the cliff, so there’s nothing to say anyway.

But I was dying for someone to be honest. I texted my friend Catherine, hopeful her memoir will soon be ready for me to read, a memoir that she herself told me was too angry, too sad, and too queer for most people to like it. I am dying for her honesty. I am dying for her anger, written across the page. I am dying for her account of breast cancer.

I know these women know. I know the Callanish people know. We’ve talked about it. But what is the choice? How does one tell an impossible story, to a theatre full of waiting faces, a theatre filled with pairs of eyes staring down, expectant for something brilliant to be said? And also- aren’t we responsible to tear apart the happy narrative, don’t we have to change the world?

And then it happened.

Someone said cancer was a blessing.

Cue, my disengagement. I just can’t. “Cancer is a blessing” is probably one of the most popular blocks in the cancer-storytelling block set. It’s like a blue square. Hundreds of them. They are everywhere you turn. When you first get diagnosed, people dump “cancer is a gift” storytelling blocks on you like they are going out of style. If you’re me, you chuck them out the window. But then again, I’ve always like being a little oppositional. My mother says its the red hair. Whatever. But truly. A blessing? Why do we cloak it this way? To make others feel like it’s OK we got cancer so young? To placate? To brush away worry?

We needn’t placate. We need to incite. It isn’t OK. We need a revolution. Stat.

And then it happened again.Someone asked these young women what they could teach “us?”

OK, first of all. Us? Why us? And who is “us?” I knew right away I was not a part of the us. I wondered if this question-asker knew. Us- a discursive move that let everyone know that “us” were everyone else, not the aberration, the healthy people. The five of us, sitting in a row and digging our fingernails into each others’ palms- we were outside the us.

Second of all, really? Teach? People who have cancer are prophetic? Really, that was the question?

No one asked what they lost. No one asked what hurt the most. No one asked about a revolution. No one asked about channelling anger. How could they? There are very few building blocks available to ask these kinds of question. There are even fewer to answer with. And everyone knows it. I don’t think its conscious. I think it’s cultural. Political. How we do cancer. It was a pedagogical evening. Full of teachable moments.

I want to unteach though. I’m over pedagogical. I am angry. I am interested in telling a different story, though I know it’s extraordinarily difficult and in telling another story, we mostly fail out of green squiggly chartreuse ovals, and lean on blue squares. Like, with the song. We’ve tried to tell a story of the everyday, a story of the cancer-ed body, a story of anger and healing braided together. Were we successful in refusing the happy pink ribbon narrative? Sometimes I think so, sometimes not. But I’m proud of our effort. I’m proud of our insistence that we have to tell something else. I know that we told a little squiggly chartreuse oval, even we fell back on blue squares sometimes. Each attempt is imperfect, but necessary.

I think the film (which will soon be available on their website and you all should watch it!) was beautiful, but it was hard. It was not what I expected. My stomach was in knots. And you all know where I go when it gets hard- cultural theory! Feminist critique! Because theory always makes everything better. I feel kind of bad, because The Art Therapist Who Presides Over Acrylics and Feathers and Glitter asked me what I thought, and I didn’t want to burst into tears in the middle of the theatre so I started spouting off about discursive space instead, and how storytelling about cancer is im/possible, and how it’s different when people edit together their own stories- and she reminded me that one of the young women worked with the filmmaker. I didn’t mean to say it wasn’t beautiful or important or totally necessary or critical and real. Those are peoples’ stories and they should be held carefully and tenderly and hopefully. And that is all. Except we also have to be engaged and critical and our theories are inside our bodies, too. How could they not be? Embrained bodies. Embodied brains. It’s both.

So theory makes everything better. Or at least, it makes me feel a little less embodied sometimes, and more embrained, so I can get through the hard moments. Theory makes everything better. But then again, so does The Song. The song is, of course, theoretical. It’s deeply engaged with cultural theory and feminist criticism. It has to be- that’s why I love it so much. It lives in my body. But I need to see the anger painted in broad strokes, I need to know I’m not the only one who is sad, I need to hold up what still hurts and I need it to be witnessed. That is exactly what I have gotten at Callanish, but for some reason, the film as a media event also felt disjointed. Maybe that’s just who I am: maybe I should try to be less critical. Maybe I should just appreciate. Maybe I should be more like those young women, women who have worse cancer than me, if we’re comparing. Maybe I should say I’m fantastic more often. Maybe I should throw more rose petals in the creek. Maybe I should do more yoga (well, that is definitely true, isn’t it?). Maybe I should, maybe I should, maybe I should….

But fuck. I need a damn oval squiggly chartreuse building block. I guess I have to make my own. With the song. My friend Catherine is writing a book I’m pretty sure will fit in with my oval squiggly chartreuse building block, and a book I think will make another attempt at angry, queer, sad, feminist cancer, another attempt to keep my song company. Maybe we’ll fail. Definitely sometimes, we will fail. But maybe sometimes we’ll end up with something approximating an oval squiggly chartreuse building block.

Now why do I feel the need to end this post by saying how grateful I am for the film, by writing how beautiful and brave those young women are, by acknowledging that we all have our own processes and that each one is powerful and important and should be held carefully and loved. What is it, that makes me feel like I need to end on that note? A pull to the other kind of story? I’m ending it here. Time to go listen to my song.