Another One With The Cancer

There’s something I haven’t written about. Something that is sort of mine to tell, and sort of not. Something that is haunting.

My mom has breast cancer.

Yah, that’s right. You read it right. Only a few years after I was diagnosed and treated for breast cancer, my mom gets a call from her own doctor. Her, too. She said I could write about it.

When I first heard about a month ago, it actually seemed impossible. It was already impossible enough, for me to have had breast cancer at 29. It was already impossible enough. I have imagined a million ways this cancer thing could go. I have imagined a recurrence, and how I would break the news. I have wondered if I had a recurrence, if I would be like those rare few who survive despite the grim 0% survival rates for metastatic breast cancer. I have wondered if I’ll never have a recurrence, and if many decades from now, they will have found a cure and I’ll tell the story of when it was still so life threatening, so harrowing, so different. I have wondered if I’ll have a recurrence and die before I turn forty, and what the world would look like without me in it. I have wondered if I’ll ever spend a whole week, a whole month, a whole year even, where I don’t think about cancer. I have wondered if my cancer friends will all make it with me into the next decade, and the next, and the next. I have wondered about a million ways this cancer thing could go.

In none of these multiple scenarios that I’ve imagined, dreamed of, and worried about does my mother have breast cancer. Cancer was mine. Is mine. Not hers.

When I first heard, I told my cancer friends, “Whatever. Everyone has cancer. It’s not a big deal. A little surgery, a little chemo, its fine. Just another one with the cancer. Whatever.” Sweet, wise Ashley, Ashley who’s adorable chemo curl is straightening back to her pre-cancer hair texture, looked at me and said, “OK well when you do wanna talk about it, we’re here.”

Our beautiful, squishy, sweet twin baby girls are due in three weeks. Like I imagined how the cancer could, I have imagined how that will go. We bring them home, we feed them Angela’s expressed breast milk, sometimes they wear matching clothes, they cry a lot and we give them baths, people come over and rock them and we eat chicken soup and drink iced tea because it’s really hot, and then the babies need to be fed again.

Will everyone descend? I hope so. People always say we will want time alone, we will want not to be bothered, they say we will want- they say we will want- they say we will want. They think they know what we need. Except they don’t, because they’re not us. I hate when people use their experiences to tell me what I need, instead of asking me what I need and respecting, knowing, even celebrating it will likely be different from what they needed even in the same scenario. Because you know what? I do not need people to stay away.

When I have a crisis, when something enormous happens, when there are big and exhausting and magical and trying and hopeful and heartbreaking things happening in my life, I want nothing more than to bring everyone close, and have people fill up all the sofa cushions in the living room, and to visit and laugh and be together. Sam always reminds me that when I had cancer, I needed people like crazy, and the house was always filled with friends. Even though I’d had a Bye Bye Boob Party only the night before, the evening before my mastectomy I needed peeps. So I called them. And they came. And we were together, even though they were about to cut my left tit off in twelve hours, and I was comforted.

Likewise, when we have our new babies, and things are crazy and beautiful and unexpected and hard, I will need my peeps.

It’s so confusing to me why you would want people to leave you alone when you have twin newborns. Based on every other experience I’ve had in my life, and based on the fact that I know my own heart pretty damn well, I know what I’ll need: and it’s not to be left alone. It’s all the people. The many dear ones. The family. The friends, together, tired, eating, laughing, being our selves. It’s a gringo thing, Sam explained, the-leave-the-new-family-alone thing. In Mexico, everyone descends. There is no space. No one asks the new parents if they need space to form a family bond. Space means your story echoes into the ethers and no one hears it, no one catches the tears or mirrors the laughter. No thank you. Everyone comes. Because its a big deal, and people come for big deals. They don’t leave you alone to figure it out all by yourselves.

So I wanted my mom to descend. To come. To hold the baby girls. To rock them to sleep. To organize my pantry. To mother me while I mothered them.

She was going to. But, cancer.

Sure, she’ll still come. But not for as long. Not as many days. She’ll still come, but she won’t be able to lift her arm up to get the glasses down from the top shelf, because of her recent surgeries. She’ll probably have to hurry back home, to get infused with cancer poisoning chemo. She might be between chemos, a few days here and there, days she will spend getting to know the side effects of chemo. Fucked much? Yes, yes indeed. She’ll come, but she won’t be able to mother me and Sammy and our baby girls as much as she would have, before cancer.

And also, what does it mean? What does it mean for my babies? Do we carry a gene they could not find? I tested negative for BRCA 1 and 2, and they found no gene mutations. They think my mom will test negative, too, but since more mutations have been found since I was tested, they will test me again if she is positive for anything. So, probably not a gene. So, then what?

It’s profoundly weird.

Were we both exposed to something toxic? What was it? We cannot think of anything. Will we ever know? Probably not.

It’s profoundly weird.

I’ve thought of changing the name of this blog, because I am kind of out of cancerland. I mean certainly, I still get check-up appointments and take hormone therapy every night before bed and schedule scans and make lists of questions for my doctors. But my hair is back, my scars are fading, and some days I don’t even think about cancer for the whole day. Other days, of course, I can’t stop thinking about it.

But clearly, even if the cancer is out of my body, we live in a world that is cancerland. The bees are dying- entire colonies, extinguished. The numbers are rising of people with cancer- my mom, sixteen people under forty at the young adult group the other evening, that friend of a friend’s cousin who someone was telling me about, my cancer friends’ dog.

This cancerland you inhabit, with me? Because we all live in it, cancerland. My initial response was, at least in that way, correct: everyone has cancer. It’s an epidemic. It’s everywhere. It’s so much that it’s not even shocking anymore.

And our cancerland, this one we all live in? It’s profoundly weird.

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…