“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!

 

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.

a good enough 2015

This year, I want a good enough year. I’m not into resolutions. They suppose there is something to resolve, which implies something about our selves is wrong, not enough, marred and that we can fix it if we just try hard enough. Cue, resolutions: solutions to all the things that are wrong about us, solutions for a better year. Because this year wasn’t good enough? Over rated. I always wonder why people can’t instead, list all the awesome things and appreciate all the parts of themselves they love. No resolving, just reveling in something that seems kinda cool.

I quite possibly had one of the most shit-astic years I will ever have. And yet, it was good enough. My friends were not perfect, but they were good enough. Sometimes they would come with me to chemo, and they would cry through the whole treatment even though I was the one hooked up to poison, and sometimes they would say absolutely the wrong thing, and sometimes they would drop off the face of the earth when I needed them most. But sometimes they would wait with me for hours on doctors who were running late, and sometimes they would put up with my cranky illness, and sometimes they would take me out to lunch just because, and sometimes they’d show up with tea and cookies at the exactly right moment. They were most definitely good enough.

This year, I want to be filled with good enough. I want my good enough friends, and lots of them. I want good enough attempts at making new friends. I want good enough tries at being present for my friends as they navigate their own personal catastrophes. Everyone has them, you know. Catastrophes. Throughout New Years, I watched people I love dearly deal with violence and death and turmoil. For them, I want good enough. Not perfect, but good enough. Good enough tea when it’s really hard. Good enough companionship. Good enough decisions. Good enough sleep.

In 2014, I stared into the mirror and bemoaned my bald head. It did not feel good enough. But it was good enough, because it got me to 2015. It was good enough because I could disguise it, and I did when I felt like it and I didn’t when I didn’t feel like it, and it was good enough because eventually, my hair grew back. In 2014, they took my left tit away, and they didn’t discover a single screening mechanism or treatment that would make me totally, forever safe from dying of cancer. But they did what they could, and I was angry, and it wasn’t what I wanted, but it was good enough. I am still arguing with them about getting an MRI, and I’m not very good at advocating for myself anymore because I am tired, but I am doing good enough advocating, and I will get the screening I need, maybe, sometime, soon. Mammogram is not good enough, and it’s failed me already, and I need what is good enough, and an MRI is good enough. And between now and when my docs finally order my MRI, my good enough friends will help me strategize and eventually, I will get the good enough screening. It won’t be perfect, and it never will be. So I’m throwing perfect out the window.

I want good enough for us. Good enough work, good enough groceries, good enough yoga and good enough dreams. Good enough, good enough, good enough. It doesn’t have to be perfect, it doesn’t have to be what we imagined, it doesn’t have to be what we should do, or could do, or would do. It only has to be what is, and we have to be in the middle of it, doing yoga and sharing food and laughter and tears and going about our lives, each a day at a time, a moment at a time, knowing that whatever it is, it is good enough.

Here’s to 2015, a good enough year.