“it’s your broken heart, your broken sternum.”

Today began with a big, giant needle stuck into my belly fat, inserting tiny pellets of hormone blocker that will release over the next few weeks. A needle so big that the doctor who administers it reminds me to close my eyes each time, so I don’t see the needle.

And so I went to yoga. My safe place. My warm place. The place where my body knows just what to do, where everything is familiar, where everything is always the same and that is so comforting. My sternum though, began to tantrum. In small bursts that took my breath away, the pain radiated through my chest bones, bringing me to my knees. We got through the standing series and then my body joined my protesting sternum. My tummy ached. I actually got up and walked out because I thought I was going to throw up. I looked in the mirror and saw the colour drain from my face, my freckles popping out of my pale cheeks like someone splashed paint across my face. But there was no barfing, so I hauled myself back into the hot room. The teacher knew something was up.

When you’re an experienced practitioner, and things aren’t going how you want them to go, it’s more mental than physical almost always. And its OK to sit out of postures. 

I knew she was talking to me. And sit out I did. My belly. My sternum. The tears behind my eyes. What. The. Fuck.

It’s your broken heart….. Your broken sternum. 

As soon as she said it, I knew she was right. As soon as she said it, my body relaxed. No wonder. My broken heart, my broken sternum. No one knows why my sternum radiates pain. Test after scan after test after scan, and we come up with nothing. And just like that, the yoga teacher tells me what’s wrong. It’s your broken heart, your broken sternum. The tears came then, from behind my eyes and from inside my broken heart.

My heart is broken because they have to shoot me up with anti-hormones, and it hurts, and it stops my period, and I miss my period.

My heart is broken because I miss my period, and I miss my period because it meant I was healthy, it meant all was well, it meant I was functioning. It meant I could get pregnant, if I wanted to.

My heart is broken because my babies are in someone else’s body, because the cancer stole my ability to give them the very first thing they needed from their mama: a place to grow big enough to withstand the harshness of the world.

My heart is broken because I sit and listen to my friends tell their cancer stories, and I love them so much that I am overcome with the desire to make it all go away, to wrap my arms around them until it is OK, even though I know it is useless to tell them it’s all going to be alright, even though I know it’s more meaningful to just listen and be together, I still so badly wish I had a magic wand.

My heart is broken for what could have been, for the carefree way I related to my health, pre-cancer.

My heart is broken because my babies are in someone else’s belly, and I miss them more deeply than I could have ever known I could miss someone I’ve never met.

A million reasons, my heart is broken. I am OK, though. One can be OK with a broken heart. A shattered heart, even. And love is like glue, and I’ve got lots of that. One can settle into a broken heart, see the light reflected through the shards, know the world this way, be wise from inside a broken heart. My heart is broken, and my sternum aches, reminding me, again and again, how broken it feels, how badly the centre of me has been burned, how much I need to attend to that trauma, how urgent it is to heal. My heart is broken, and it is reminding me, to peer at the world from this place, from this vantage point, from where I stand. For it’s all I’ve got.

Sometimes doctor’s don’t have the answer. Sometimes yoga teachers do. Sometimes our hearts knew all along. It’s your broken heart…. your broken sternum.” 

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What Not To Say To Your Friend Expecting a Baby (Or Babies!) After Cancer Via Surrogacy

So you have a friend who is expecting a baby via surrogacy. Probably she didn’t know how to tell you, because her belly isn’t ballooning. Probably she worried about what you would say, because what are you supposed to say? Probably you worried about what to say, because what are you supposed to say? Probably you are so used to a narrative that goes something like, “friend gets pregnant, friend’s belly grows, other friend throws shower for friend with basket ball belly, baby emerges from friend’s vagina and isn’t super cute at first but everyone coos anyway and eventually baby gets cute and so you kiss it and finally agree with friend that their baby is cute.”

Probably then, you’ve never been given a road map for my scenario, which is more like: “friend gets married and is about to go off birth control, friend gets cancer and wails about not being able to get pregnant and grills her oncologist who has no answers at every appointment, friend gets well and her hair grows back, friend finds a surrogate and the surrogate gets pregnant with friends’ embryos, and soon enough, friends’ babies will emerge from the surrogates’ vagina.” That is my reality. Though I know you didn’t mean to sound so insensitive, here’s a re-cap of your worst blunders, and your best saves, because you don’t know what to say. As the person expecting babies from a surrogate, I have a few ideas about what I wish you said, and about why it felt so horrendous when you said something else. And so, I’m sharing. Sharing as a window into what it feels like when you comment on my pregnancy via surrogacy, as a window unto what I wish you could say, as a window unto what I, the woman expecting babies via surrogacy, needs from you, my friends.   So, what not to say….

The “But You’re So Lucky” Comment

What Not To Say: “Oh but Chels, my pregnancy sucks/sucked. It was/is so terrible. You’re so lucky to get babies without having to go through this. I mean really, I hate feeling like this. You’re not missing out on anything.” 

Why not to say it: Please, please, please, narrate your own experience. When you begin to tell me how I should feel, I don’t feel the way you think I should- instead, I feel invisible. I will listen to the end of time about how totally sucky your pregnancy was and about how you hated every second and spent no seconds in that weird elusive glowey state, and I promise to correct myself if I start telling you what you should feel like. In return, please listen (preferably also to the end of time) about how totally sucky it is to have someone else (albeit an awesome someone else) have my pregnancy for me. I think we can all agree that, hating your pregnancy is quite a few steps away from giving your embryonic child to someone else to grow in their uterus, especially when you are doing it because you had CANCER and having your own offspring in your own body might leave your children motherless. Less comparing. More listening. After all, if I could wish one thing, I would wish I would not have ever had cancer, which would- in my mind-have a domino effect that would result in my being pregnant without worrying that the rising estrogen levels that accompany pregnancy could kill me. Seriously. We are talking life and death, not life with morning sickness and acne. Don’t compare. Period.

What to say instead: Less comparing. More listening. Comparing is, after all, useless. (Unless you are in the subset of women identified women who had breast cancer in their 20s or 30s and before they had all the babies they wanted, and then you can compare our experiences to your hearts’ desire and I will indulge your comparisons and cry and laugh with you). More asking about ultra sound pictures. More asking “So what is it like?” More asking “So how did you find the surrogate?” More asking “Do you have ultra sound pics?” The kink here, is that when you are willing to ask questions, you must be generously willing to listen. Listening with a wide open heart, with wide open ears, with wide open hope, with wide open not-knowing.

The “Is it responsible to have babies after cancer?” Comment 

What not to say: So, do you think this is really responsible, having babies when you’ve had a life-threatening disease? Having babies when doctors tell you there is a 70% chance you’ll be alive in five years? Having babies when you only have one tit? Having babies when you don’t have a magic 8 ball that can read the future?

Why not to say it: When you see a pregnant woman walking down the street, or ordering tea in a coffee shop, or attending graduate classes, do you quiz them about whether they were ready to have a baby? No. It’s not socially acceptable. If you do quiz them, your social skills are quite poor and definitely not advanced. Between me, my partner, and my surrogate, we are cared for by multiple physicians, oncologists, midwives, primary care docs, OBs, fertility specialists, naturopaths, and acupuncturists.When we discuss, with each other, what is appropriate, we draw on our many, many doctors. If you’re not on our care team, and you’re not married to us, and you’re not us, then get the fuck out of our decision making process. Didn’t, after all, women wage a war to have the right to decide about our reproductive futures oh….. decades ago? (Yes, I know we who think women should make their own decisions about their own bodies are under political siege in many places). Basically, unless you are one of the four people who have opinions that matter (including: me, my partner, our surrogate, her partner) or unless you are my oncologist who specializes in young women with breast cancer and fertility issues, then you clearly don’t have enough information about the whole situation to even weigh in. So get out.

What to say instead: This must have been a hard decision- wanna tell me about it? Wow, I never thought about cancer before I had kids- what’s that like? How did cancer change having babies for you? Basically, anything that doesn’t involve your judgement about my situation (unless you’ve been in my exact situation, in which case, let’s have a beer and talk all night long).

The “How much are you paying her?” Comment 

What Not To Say: Oh, so you must be paying her buckets of money. Is your surrogate getting rich off this? She’s doing it for the money, for sure.

Why Not To Say It: Lending your uterus to grow someone else’s babies is an act of utter selflessness. Yes, our surrogate receives what you might call “generous” reimbursement (and that would be your perception, not mine). No, it is not enough. It’s her body. Her body. HER. BODY. Sure, we’re paying her. Wouldn’t you, if you were commanding someone else’s body to grow two babies? Is it enough? No. How could we possibly put a value on her body, or our babies, or the way our babies need her body? And um, if being a surrogate were so  fiscally fruitful, why don’t you go be a surrogate? Do you see people lined up to offer their bodies to grow someone else’s baby? No. You have to be a really extraordinarily exceptional individual with a particular orientation to life, relationships, pregnancy, babies, and the world to even consider doing this. Also, dude, financial shit is personal. No, we are not filthy rich, and no, we don’t have trust funds. Yes, our families are pitching in. Yes, I feel like we are hemorrhaging money but I think it’s worth it (plus, kids last longer than most things you spend this much money on, like cars). Unless you are the kind of friend to whom I disclose my salary, how much my new pair of shoes cost, what I spent on the most recent vacation, and how many more thousands I owe in student loans, back the fuck off. If we don’t already talk financials, this situation seeming weird to you doesn’t give you a pass on being polite and respectful and staying out of my bank account.

What to say instead: I’m so impressed you made this work- is there anything I can do to help? I’d love to send your surrogate a card telling her how incredible it is to watch her doing this for you- can I have her address? I can imagine that this kind of thing would create totally undue financial stress on young(er) adults who have had cancer, and I think that its SO UNFAIR that you could survive cancer and then have to pay tens (or hundreds) of thousands of dollars just to have a baby. Can you suggest anywhere I can donate to help other young(er) adults create families through surrogacy, like you? (This would mean the most to me, out of anything you could possibly do or say.)

The “Is she going to steal your babies?” Comment

What Not To Say: But do you worry she’ll be attached to the baby more than you? But are you afraid she’ll steal your baby?

Why Not To Say It: Pray tell, do you actually think we would have chosen a surrogate who we thought who abscond with our babies? She has her own brood of beautiful children, and do you think she would have chosen to be a surrogate in order to steal a baby? There are much easier ways to kidnap a child. Of course I worry about attachment, and of course she and I talk about how to make sure the babies are attached to me as their mother, not her, and of course she has all kinds of ideas about how to facilitate my attachment. Also, like a whole mini forest of trees has died so that our legal teams could write down in totally dense language an agreement that we all signed about this whole scenario, months ago. And you know it must be really intense if you’ve got a (post) post structural feminist calling language dense. I mean, really. And finally, when you say this, you make me feel like I would have chosen just anyone to carry these babies- like I didn’t put in HOURS/DAYS/WEEKS/HELLA TIME thinking about who would do this, picking this one particular person, like I just picked some rando off the street. Do you think I would entrust my babies to just anyone? To some rando on the street? Is that really the kind of person you think I am? (If so, we probably shouldn’t be friends).

What to say instead: So do you feel close with your surrogate? (yes) Do you want to keep in touch with her after the babies are born? (gawd yes, plus she knows all the things about babies so I suspect I will be asking for advice) Why do you think she wanted to be a surrogate? Why did you pick her? What do you love about her? How do you stay in touch with her? And then shut up and listen

The “Because you don’t want to risk it” Comment 

What Not To Say: Ah, the all knowing comment. You are the one who thinks you “get it.” Trust me, unless you are one of those young/er adults meeting up for dinner and swapping stories of scans, MRIs, port scars, chemo constipation, whether your pubic hair fell out first or last, how many hot flashes make cancer-menopause actually menopause, and the like before the Young Adult Cancer Network (YACN) support group, you don’t get it. I get that you’ve heard me say how I decided to have a surrogate because I didn’t want to risk it, but you don’t get to appropriate that and say that you get that I don’t want to risk it, or even that you think it’s good that I’m not risking it. I don’t want you to say it, either, because I don’t want you to get a card that allows you into YACN, and I don’t want you to have cancer. And I did have cancer, and I need you to get that sometimes I need to say things you can’t get, and sometimes I need to be with people who get it like you can’t.

Why Not to Say It: To me, this comment is all about you trying to pretend like you get it. And you don’t. There’s no way you can grasp the kind of risk involved in waking up and breathing every day, after a doctor has given you any percent less than 100% of being alive at some point in the future. And I don’t want you to. And I feel silly for being so full of emotion when you pretend to get something from outside of the experience, which is dumb and not how you are trying to make me feel. You are trying to be supportive. So instead….

What To Say Instead: Gawd, this is fucked. It sounds like you’ve made some complicated decisions. Wanna tell me about it? Oh, and also, I’m so over the moon excited to eat you babies’ toes, regardless of what uterus they are born from.

But you know what? You might fuck it up anyway. You might say the wrong thing. Lots of people have. And you know, it doesn’t matter much- AS LONG AS THEY OWN IT. I have two friends in particular that I’ve learned so much from about this. Both of these friends are total rockstars at saying that a) they care b) they don’t know what to say and c) they might mess up. What makes them such rockstars is their fearlessness. They are totally fearless, even in the face of really crazy cancer shit, really pissed off cancer patients, and really hard cancer truths. And sometimes they fuck up, and then they say, “Oh man, I think it hurt when I said X, and I am sorry, and can we talk about it?” And we do, and it doesn’t matter what they said, because we’re friends and we love each other and we all fuck up sometimes.

So do that. Fuck up, own it, and keep loving.

Let’s Be Real.

OK, let’s be real. I haven’t been real about this surrogacy thing, on the blog. I’ve been real about it at the Young Adult group at Callanish, and I’ve been real with close friends on the odd walk around the sea wall or on those occasions when you’re riding your bike by your friend’s house late at night, and they happen to be home, and you have a spontaneous curb side chat and never take off your helmet. But we had to break the news before I was real. News is broken. We all know its about to be awesome in our house, with two tiny baby girls to cover in kisses. So. Let’s be real.

Two weeks ago, I sat in the waiting room. I waited. While a technician did the ultrasound of my babies on our surrogate. It felt wrong to be in the waiting room. “But that’s what the fathers do,” the secretary explained. Fuck that. I’m not the father. But I waited quietly. Forever, it seemed. Far enough that I might have been miles away, as an old Brit took measurements of my babies in someone else’s belly. Because of course, the secretary explained again, “that’s what the fathers do.” Newsflash. I’m not a father. And it does make me wonder, what about the partners that are also mothers? I’m not the father, I’m the mother. And those are my babies. And I should have been there, for the entire ultrasound. I don’t give a single sh*t about the technician doing their job, taking measurements, not needing other people in the room. They’re my babies. Mine. And I should not have been in the waiting room.

I couldn’t pull it together that day to advocate, but I knew it wasn’t right. I could feel it in the pit of my belly. It felt horribly wrong, horribly unreal, horribly impossible to wait in the waiting room while someone else had an ultrasound that to check the measurements of my babies. I just couldn’t articulate it until tonight, until someone sat across from me in that sacred space that is Callanish, and shared exactly this experience, shared exactly this anger, shared exactly this alienation, this invisibility, this impossibility. You bet I’ll be calling that facility tomorrow, to help them learn from this experience. Object lesson, for the hospital staff. But that feeling in the pit of my stomach, the one that burns with the sensation of something being terribly out of place? That feeling isn’t only one that lurks during ultrasounds. That feeling is one that has pervaded the last twenty weeks. Knowing I can pour myself a glass of wine without any concern for my babies’ developing brains and bodies is absolutely unnerving. Heartwrenching. Full of ache. It cannot feel right, because it isn’t right. They should be inside my body. My breasts should be intact. My ovaries should be functional. My body should be their safe place for growth.

That woman tonight, that other woman who has two girls by surrogacy, both born post-cancer? “I have always trusted my gut,” she explained, “but with the surrogacy, I couldn’t. There was never a gut-feeling that this was OK, because fundamentally, it wasn’t.” Of course not. How can your body send you a feeling of OK, when what should be OK in your body is so not OK it’s not in your body? Having my babies inside someone else’s body cannot make me feel, ever, OK. It can only make me feel like my babies should be inside my body, and they are not. That ache, that horribly unsettling feeling? I’m pretty certain it’s here to stay, until our little girls are in my arms, until they are mine to take care, just as they should be right now.

Right now, it seems like everyone is pregnant. Friends all around me have bellies busting through their t-shirts. They have ultra-sounds and they leave their husbands and wives in the waiting room until the technician is done with her “job” and ready to play show and tell. They order sprite instead of champagne. Sometimes they tell me how hard their pregnancies are. How awful they feel. I want to receive their words with care and comfort. I think I can hold the space with love and listening. I hope I do. I certainly try. But you know what really gets me? What really shatters me is when they tell me how lucky I am. How I wouldn’t want to feel as horribly as they do. How I shouldn’t want to be pregnant. How I’m so fortunate. It makes me feel invisible. It makes my heart ache. It makes me shut my mouth. It makes the heartache worse. It makes me defensive. It makes me scream, DO YOU KNOW I AM DOING THIS BECAUSE I HAD CANCER, AND THE HORMONES WOULD KILL ME, AND THEN THE BABIES WOULDN’T HAVE A MOTHER?

It makes me want to shut down communication. It makes me call my cancer friends in tears. It makes me rush to Callanish, and it makes the words of anger and sadness and confusion and frustration pour out by the bucket. It makes me feel like the wedge between us grows, exponentially. What I wish they would say instead, is that they have no idea what it would be like, to have their developing baby outside their body. What I wish they would say instead, is that they are listening to what I am saying, and they don’t know what to say at all. What I wish they would say instead, is that they hear me, even if they cannot relate. Tonight, the pregnant facilitator of the Young Adult group looked me in the eye and said, “I have no idea what it would feel like to have my baby outside my body.” My eyes filled not because I was sad, because I finally felt visible. Heard. Seen. She doesn’t understand, but that’s not the point. I don’t want her to understand. What I wanted from her, and what she did so gracefully, was to centre herself in her own experience- which made me visible. What I wanted from her was to hear her talk from her place of knowing, and for her to acknowledge what she could feel, and how she could know- and also, what she can’t know in her body. She didn’t tell me how I should feel, what I wasn’t missing, or how her experience should or could narrate, explain, or justify my own. And in doing so, she made space for me, too, made space for the unknown, my unknown, together next to hers. Not the same as, but next to. Listening to. Knowing with. Space for. Enough. It’s all I could ask for. It’s all I could want. It’s all I need. Not the same as, but next to. Listening to. Knowing with. Space for. Enough.

I wonder why we have such an urge to narrate each others’ experiences. To compare what is worse. To tell others how it is. To use our own experiences to provide judgements and shoulds. To educate about someone else’s experience, while only knowing from our own. Sometimes I think education itself is an inherently violent practice, and this is why- for the hurtful possibility that telling someone else how to know something, how to be, from outside that someone’s body is just so violent. It is not about sympathy. It is not about comparing. It is not about you telling me how it is for me from your vantage point. It is about listening. Silence pregnant with listening, so much listening that there’s only silence. Caring. Listening hard. Listening to our inside voices.

And my inside voice? It’s time to be the fierce advocate I know how to be. It’s time to be full of fire. I will call the hospital tomorrow, the one where our dear surrogate had her eighteen week ultrasound. It won’t make a difference for me, but it will make a difference for someone else, I hope, in the future. It’s time to be the fierce advocate I know how to be, for our baby girls. It’s time to write into the birth plan what I know we need for them, it’s time to draw boundaries and make commitments and shape futures, because I am a fierce mama. She told me so, the other young woman with babies by surrogate after cancer. She told me making those decisions, doing what I need, asking for the absolute- that’s not being a bad mother, she said. That’s just the opposite- that’s being the fierce and hopeful mother you have to be, the one you already are.

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!

 

Mine Alone

I wish we could sit together, and have a cup of tea, and talk about breast cancer. And feminism, and race, and diaspora, and narrative, and academia, and the world. I think we could talk about all of those things, through the lens of breast cancer. After all, she wrote The Cancer Journals- the first (as far as I know) chronicle of breast cancer that critically interrogates the personal, political, embodied experience of cancer, in a way that only Audre Lorde can. Her work has mattered to me for a long time, since a prof assigned Sister Outsider in a freshman level course I took at Pitzer College, yet her Cancer Journals has struck a chord inside me unlike her other work. I have read and re-read passages, I have asked what treatments she did and thought of copying her, I have spent hours considering my surgery decisions in relation to her beautiful, political, writing about how breast reconstruction is a symptom of greater, uglier social ill surrounding the female body as an object of attraction, about how we need to be able to recognize each other, about how breast reconstruction let’s everyone live in la-la-no-cancer-land. In the context of cancer (but also always in the context of lesbian/black/feminist/mother/poet), she wrote: My silence had not protected me. Your silence will not protect you. But for every real word spoken, for every attempt I had ever made to speak those truths for which I am still seeking, I had made contact with other women while we examined the words to fit a world in which we all believed, bridging our differences. I wonder what she would have made of the world of blogging, of the proliferation of cancer blogs and dedicated cancer twitter chats and facebook announcements. Gosh, we need her. I am angry at breast cancer for taking her. And I am angry that decades ago- decades ago!- before I was even halfway through elementary school,  she called for a cancer revolution, she called for bodies to be dumped on the steps of what matters, she called for organizing— and you know what? It hasn’t happened. Because here I am, twenty two years after her death, and I had breast cancer, and her words still ring true. Not much has changed.

Tonight, I watched a film about part of her life– Audre Lorde: The Berlin Years. We sat together in the Vancity Theatre. I was buzzing, because earlier today we met with our fertility team and surrogate, and it looks like everything is going to move forward with crazy-baby-making involving our embryo in someone else’s body. It was the first time I saw lots of UBC folks since my diss defense, and there were many “Oh, you look so well!” “Oh, your hair is so long and looks so good!” and “So your health is OK, now, right?” comments. I do look well, my hair is (relatively) long, and since I used to have cancer, well, anything looks good in comparison, right? There’s such a fixation, I’m always reminded in these contexts, on my being healthy. There is no space for me to say I’m not healthy. And of course, I am healthy, and that’s awesome. However, I feel always compelled to blurt out, “But with breast cancer, no one can ever know. There’s no way to monitor.” It just feels so pervasively like, you must be ok and if you’re not I can’t hear about it/don’t want to know. Especially this month, in the wildly inappropriate pink celebration, I have to refuse the “but you’re OK now, right?” Because, and if only because, who ever knows? And also, not everyone is OK, and that is especially the case in the more aggressive breast cancers that affect younger people. But mostly, what if I stopped being OK? It’s as though there’s no room for me to qualify my health, and not even the tiniest nod to the insane amount of damage wrecked on my body, mind, and soul. I suppose I’m so bothered because it leaves me no choice to respond but with, “Yes, I’m OK.” Instead, why won’t they just ask how I am? Why can’t they let me answer? I wouldn’t spill my guts to most of these folks anyway, but then they could actually witness my statement that I’m OK (or that I’m not), instead of defining my experience for me and making me wish I could disappear into the ground. This is like human interaction 101: Empathy. Even Brene Brown said so. 

I loved the movie. I was entranced. I was hopeful- listening to this inspiring feminist. I love the way Audre Lorde speaks, the slowness of her words, the carefulness in her speech, the way she uses her eyes to really get right at the heart strings, to produce feeling and wonder and hope in only a few words. What a gift that her words are recorded anywhere. I was in absolute wonder. She is awesome. But then they started down the cancer route. It was like a splinter underneath my fingernail, wiggling around in there. First the doctor on camera said she had survived longer (her breast cancer was metastatic) because she was “special.” Ok look, she was special. But so is everyone else, and I bet she’d be the first to argue that, and then maybe she’d argue for just health care practices (she went to Berlin to access alternative health care). I loved every second she was on screen, but these kinds of moments left a metallic taste in my mouth, the feeling that it just wasn’t represented as carefully as it could have been, the feeling that her cancer words were bruised and misunderstood.

Maybe I’m over-reacting. Maybe I am over-reacting because I over-react with any kind big-screen cancer representation. Maybe it’s still to raw. Maybe not. Maybe I’ll always react. But all I wanted to do was book it, as soon as that screening came to a close, and talk with my cancer-buddies, who I desperately wished I had dragged with me to the screening. And as I drove home, I realized that the kind of profound misunderstanding I felt after the film, as more questions of “But you’re OK, now, right?” peppered the small talk is mine alone. And so in solitude, I drove across the bridge, and it was silent, and it felt right, and the air felt heavy with my thoughts and my anger at cancer having stolen Audre from the world, and my rage that nothing has changed, and my sadness that I can’t have a cup of tea with her.

And then I found myself in Sammy’s arms, and he reminded me that today is a day to celebrate. After all, before I went to the film we talked hospitals and birth weights and ferry rides and midwives with our surrogate over lattes after we all signed endless paperwork at the fertility clinic. It felt good, and we all were giggling with excitement, and I can’t believe it’s actually happening. And it’s pretty freakin’ awesome to figure out how to do something you wanted really bad, especially when you thought it had become impossible. Today, we made real gains on scaling up the side of an im/possible cliff. For months, all I could think of was the cancer killing me. Really. I was certain the cancer would kill me. But my certainty has given way to something else, and now I’m only certain we can have what I thought was impossible. Im/possible. What a hopeful slash.

And so we did. Cookies and tea. About the best kind of celebrating as far as I am concerned. Cheers, we said, because we passed the phsych screening test to proceed with surrogacy. Cheers, because we think we’ve found the right woman to carry our baby. Cheers, because the doctor was hopeful and helpful. Cheers, because we can still fight for what we want, even if its not how we envisioned it, because we want it bad enough to be creative and silly and stubborn in our pursuit. Cheers, even though there is darkness, even though there is sadness. Cheers, because the darkness’ twin is light, and cheers, because they always exist together, balancing and sometimes, producing a grounded hope. Grounded hope.

Mine alone is the feeling of knowing that Audre Lorde film from a white/cancer/feminist perspective. That’s both terrifying- mine, alone?- and liberating- how many multi-faceted, creative, surprising interpretations were there? What would happen if we could all listen to each other reflect on the lifework of this ground-shaking feminist/lesbian/poet/black woman? I wish we could sit with tea, I wish I could listen to her. But instead I have her writing, her texts, her poetry. And you bet I’ll be reading again, soon. And mine alone will be the feeling in the bottom of my stomach, when I feel her stories, when I know the cancer stories from the inside out, when I hear them reflected by my cancer buddies, when I hear my own cancer stories echoing hers, when I wonder why nothing feels like it’s changed, except that now breast cancer is dripping in pink ribbons. Mine, alone. A power to claim, that is, indeed. It is most certainly a way of knowing that is critical, and it is mine.

If I didn’t define myself for myself, I would be crunched into other people’s fantasies for me and eaten alive. – Audre Lorde

the worst part

I got excited.

I thought we could have a baby, and soon. I was imagining strollers and waking up in the middle of the night and that tiny-baby smell. I started thinking about how maybe things would work out, maybe the cancer hadn’t derailed all the baby-making plans entirely. I got ahead of myself. It’s important to be measured and careful in thinking about having a baby via surrogacy, because there are so many things that could go awry. Things could get out of hand because it’s such a profoundly weird thing to contemplate for all parties involved, because it requires such massive amounts of paperwork and documentation. Thing is, I probably wouldn’t use “measured” or “careful” to describe my personality. Certainly I am organized and efficient and I have my sh*t together, but I don’t like to wait. I like to run with the wind with all abandon and move quickly and jump into new situations with both feet at once. Of course, you can’t exactly run with the wind when you’re asking someone else to carry your baby and there are so many hearts and souls and bodies involved, and someone could get hurt.

This is the worst part of cancer. The fertility derailment is the worst part of cancer, I mean.

There are less hearts involved if you hire a surrogate though an agency, but that feels creepy-crawly, it feels like baby-buying and it feels like something I want to shrug off, though the possibility lingers. And it is $30,000. That is the easier route, and also the totally unaffordable route, but it’s clear to me why some people choose that route, why they don’t want to risk heartbreak, why they don’t want to get family or friends involved, why they have fundraisers and sell heirlooms to pay a stranger to carry their baby. I get it. I also get that this is not an option available to most young adults who have had cancer, for financial reasons.

Sometimes I think I should just go off my estrogen blocker and get pregnant myself, and I will begin my research on this option in earnest, tonight. The gist of it is that my cancer responds to estrogen, and the estrogen-blocker I take every night would be potentially harmful to a fetus. I take this estrogen-blocker to prevent a recurrence: even though I’m cancer free right now, this drug makes a serious dent in the possibility that my cancer recurs. It’s interesting, because the estrogen-blocker (tamoxifen) used to be used as a fertility drug, until too many babies were born with birth defects.

And so I’m left in a quandry: wait another year, until the oncologist semi-approves of me going off the drug and get pregnant myself as it appears I’m still fertile; get pregnant now, anyway, because I cannot wait even if it means going off the estrogen-blocker; or muddle my way through surrogacy and search for someone who might be in a place in their life to carry a child that is not their own, now. There are no good options. It is the worst part of cancer.

What’s a girl aching to have a baby to do? Certainly, I wish we hadn’t waited until now. I wish we hadn’t listened to the people who said we should wait till after the Ph.D., I wish we hadn’t talked ourselves into the sensibility of waiting, I wish-I wish-I wish, but as we all know from trying to wish cancer away, wishing falls flat in the face of reality. I want a baby. I think we would be great parents. Now’s as good a time as any, and I so badly want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby.

Someone wise told me once that grief is the space we reside in when we refuse to accept life as it is. And perhaps they were right. I cannot accept that we can’t have a baby, I don’t even know if I can accept we can’t have a baby, now. And so I put this out to the universe, not expecting a response but in grave need of guidance: What do we do now? Do I go off the meds, and get pregnant? Do I search high and low for a surrogate? Will one appear in my life, or is someone already in my life ready and waiting, because the universe knows how much we want a baby? Do I decide to wait until my oncologist grants semi-approval? Do I forget the whole baby-making endeavor entirely and focus on writing an academic book?

Ha. As if I could forget. Anyone who knows me knows how very stubborn and determined I am. Watch me make this happen. Somehow.

So community of mine, spread the word. We’re looking for an answer here, in the form of research about very young women and tamoxifen and pregnancy, or in the form of contacts and ideas and innovation, or in the form of support and love and care. So community of mine, where do we go from here?

the head, the heart

“It was worse for me, than the cancer itself.” When I heard those words, I sighed a big, giant sigh of relief. On the other end of the phone line was a woman telling me about how cancer stole her fertility. It was worse, she told me, than the the cancer itself. I thought I was the only one. I wasn’t. And even better, she’s through. Her depleted ovarian function and out-of-commission uterus was worse than the cancer itself, but she got her baby anyway, and she’s expecting a second one soon, a second baby squirming in the uterus of another woman until it’s time for her to hold that baby in her arms. She spoke with wisdom and calm, of the turmoil and of the resolution, and of the way things happen in the end, just as they should. I was relieved.

I always knew we’d have children, it was only a question of when. We were waiting until I was through the PhD, until I had a tenure track position, until we were solidly situated in a city we would expect to call home for a long, long time. That was the way we organized time, how we thought about our lives, how we organized events on a timeline, one after the other. But we’re not on that path anymore. We have no timeline. The organization is amuck. And who knows where we will be in a year, in two, in ten. And more importantly, who cares?

With a cancer diagnosis and many months of treatment under our belt, the way I think of time is entirely different. There isn’t a ton of it, and it’s never certain. There’s always an unknown, a question, a not-knowing. Things could change in a moment, and radically so, or they can march on in the mundane, so mundane that it’s boring. And we can never know. There is no vision, no mirage, no whisper of what the future holds- simply, we cannot know. That’s not hopeless. In fact, it could be just the opposite. It is both hopeless and hopeful, it is impossible and settling. We cannot know, we don’t know what will come. And so planning things like babies and careers is both exciting and pointless. It is thrilling to think ahead and utterly without reason.

Yet part of me is still stuck in the rut of planning, obsessed in the security of what should be, what could be, what is, what was, what I know is impossible. That part of me is my head, telling me we should be practical and watchful, waitful and hopeful, telling me a baby should wait until I have an office on a university campus and something to profess over. But the rest of me, the heart beneath my fake boob that is feeling the world, begs to differ. The rest of me shakes her head at  waiting, at willful planning, knowing that it is useless, knowing that following the heart is a path more studded with jewels than the journey the head wants to take.

I am extraordinarily fortunate to have a family member I trust deeply who wants to carry our baby, in spite of the warnings and risks that made me raise my eyebrows at the fertility clinic. It just seems so intentional, and it is intentional, and intentionality lights the fire of planning, of details of spreadsheets and worry. If she becomes pregnant with one of our embryos, it is intentional. There are so many costs, so many details, so much coordination to be ironed out. It’s not as though we went off of birth control and let what happen will: it’s the willful, intentional, hopeful act of implanting an embryo. It’s way more intentional than sex without birth control.

The intentionality is hopeful and heavy, and brings to bear questions that make me wonder what will happen, if we don’t have enough money? Will it be insane to start a job with a newborn? What will happen if I don’t get an academic job? Is it a bad time? Have we waited long enough to ward off cancer recurrence? Is this smart? Of course, it is my head asking away with questions, when I know that we will be OK, that poor people and wealthy people and stupid people and weird people have babies who are, for the most part, OK, all the time. Besides, my mother assures me lots of people move and get jobs with babies. Thanks, mom, I didn’t know that.

My heart laughs. Who cares if I’m on the job market? Why wait? Haven’t I learned anything from cancer? Isn’t it blatantly obvious, now, that waiting for something you want badly is without reason, that money is the way capitalism chokes the life out of beautiful people, that if its time, its time and the rest will follow?

And my head intervenes. But you’re on the PhD job market. But you have visa costs. But you don’t know where you’ll be in a year. Yes, my heart responds, but you do know. You will be home, somewhere in the world, with Sammy and Benito and Lulu, and you will continue to do something you love, as you always have, and there will be yoga classes and salsas simmering on the stove and friends who drop in to say hello. So in fact I do know where we will be in a year, we just don’t know the specific details I obsess over. But we do know something.

And so? The head? The heart? Who gets to say when we get to implant an embryo into our dear, dear surrogate?