something slightly off

There is something slightly off about this most recent breast cancer “post” everyone is sharing on Facebook. You know the one, this one. It’s about a woman who’s ten or so friends shaved their heads bald for and surprised her, all at once. I can’t quite exactly pin my finger on why the constant sharing of this video is unnerving, but every time I see it on Facebook I kind of wrinkle up my nose and roll my eyes.

Noticing the amount of eye-rolling I was doing every time a Facebook friend shared this thing, I started to wonder if I was jealous? Was I jealous because my friends didn’t all shave their heads at once for me? No, not really. It might actually be kind of weird if my friends did that. Or maybe not, maybe it’d be totally awesome. I don’t know. That wasn’t it, though, the reason I was so annoyed. Someone told me people sometimes shave their heads to be “in solidarity.” Then I remembered a conversation I had with one of my closest friends, about solidarity. That was it.

Gerdi’s friends say they realized that shaving their heads was the least they could do, and that they learned hair didn’t matter. Umm. Ok. I wonder how actually shaving your head actually does something for Gerdi, or for breast cancer? Enter this whole “solidarity” thing. Of course, shaving their heads doesn’t make them “feel” what Gerdi feels, and I imagine they know that. So, they were in solidarity.

Except Gerdi wasn’t there with them. The video shows them shaving their heads, to later surprise her. They were in solidarity but they forgot to get Gerdi’s consent to be in solidarity with her. The head-shaving was about them, not about their friend Gerdi with breast cancer.

Being in solidarity with someone or with a community requires partnership. Conversation. Ongoing consent.You don’t get to just pick someone or some cause or something and be in solidarity. It’s an ongoing, negotiated relationship with the people/person/thing/community with which you are in solidarity. I am certain we have feminists of color and those writing about advocacy and ally-ship to look to for advice, insight, scholarship, experience about this particular relationship. Solidarity isn’t something you get to do to someone else, especially when you claim solidarity without discussing, including, negotiating with who ever you are in solidarity with, in an ongoing way. You don’t get to decide to be in solidarity: you get invited to participate precisely because you can check your own privilege and own up to the times you f*ck up, because you will, and that is OK. Being in solidarity is a privilege, and claiming solidarity without a negotiated relationship is seriously disempowering, invisible-izing, and even hurtful to the community of people you are “in solidarity” with.

The sharing and re-sharing of this video seems to say, “I am sharing this, and this is my act of solidarity, too.” And yet, no one asked. Sharing doesn’t imply actual engagement with breast cancer, or those of us who have it. It merely is a contribution to an over-saturated communicative environment where sharing this video shows a kind of awareness, a softness, a sweet hopefulness about cancer. Ya know? And this thing gets shared without any relationship to the actual community of people living with breast cancer. When someone shares this video, they are situated as caring, aware, oh gawd, even “in solidarity.” They get to be part of/in solidarity with/sympathetic to the cancer community, and sharing lets you do it without any engagement with the actual cancer community. That is what irks me so about this video and the way it is traveling rapidly through my networks.

So again, it’s not the video. It’s the way it moves. And if you want to be in solidarity with someone, anyone, something, somewhere, some issue, then get close to that community, know that community, ask to support that community, deal with f*cks ups between yourself and that community, actually engage with that community.

And then maybe you can be in solidarity.

zombie babies

In my fridge, there are boxes and bags filled with syringes, glass capsules of powdery hormones and saline solution, alcohol rubs and these tiny little medicine mixers called Q-caps where I concoct medical solutions from different viles before injecting myself in the belly. It’s literally a science experiment, and I’m the mad scientist shaking, injecting, pinching fat, tapping bubbles out of the syringes.

You see, chemotherapy often results in decreased fertility or sterility in young women. There’s basically a black hole of research when it comes to very young women and breast cancer, particularly in terms of fertility and chemotherapy, likely because most women with breast cancer are over 45, and most of those are over 55, and so of course, most of the research dollars go to that bulk group. Most folks are not frantic about baby-making, because they’ve already made babies by the time its time to use modern medicine to kill all dividing cells in the body. Cells that make eggs are cells that divide. Cells that chemotherapy kills.

And so here we are. Sammy and I were just waiting to think about what city we’d raise our bilingual, bicultural, rockstar babies in. We were waiting ’til my medical chart would read “Dr. Chelsey” for the birth of the newborns. We had a vision, of these bilingual babies and the home we would decorate with bright colors and the pups that would roam the land around us and the professor and composer/musician jobs that would fill our bank accounts with enough money. And we were so close. Close enough to smell the soup simmering on the stove and close enough to hear the symphonies and concertos filling our home with sound and close enough to think about which publishers might turn my diss into a book and close enough to imagine the next projects in our research and musical careers.

That was life B.C.. Life Before Cancer. Then, now, there is life A.C., After Cancer.

In this life, we freeze embryos. We are part of a special program where fertility preservation is seriously subsidized— all you need to do to get affordable, nearly free IVF is get cancer.

Some people think I shouldn’t be so public about this. That getting ultrasounds of my now-swollen ovaries every 48 hours, and that injecting my belly fat with three different needles every night is private business. But you know what?

This cancer is not private business. Cancer is about plastic and toxins and the stunning realization that the careless way we treat our environment, the world, others, profit, capitalism is manifesting in my body in ways that I cannot control, manifesting in such ways that it could eat its way through those dreams, cutting away the time I needed to publish more books, to paint living room walls bright blue and vibrant red, and to cuddle in front of the fire with tea and popcorn and lovers and best friends. So it often seems like an old and tired argument, but here it seems apt. The most private, what happens inside our breasts, breasts who’s image is torn between the pornographic, the sexy, the motherly, is absolutely political, public, and practically bursting to be discussed, to be chewed over, to be written about thoughtfully, carefully, complexly. Cancer is most definitely a public issue, a political issue, and especially when it comes to breast cancer in very young women like me. Its wildly hot, insanely unjust, and urgently in need of radical, responsive attention. It’s an over-boiling zone, where environmental justice, feminist theory, cultural studies, globalization and toxins, biology and fertility are in red-hot collision, producing sparks and flames and smoke.

So yes, I think its absolutely appropriate to write about this journey through heartache, where the dreams shatter and the babies become not babies, but frozen embryos. Neither dead nor alive. Which makes them ZOMBIES. That’s right. The doctor told me today it looks like we’ll end up with about fifteen embryos from eggs in my oh-so-swollen ovaries. And those embryos will be frozen in time. Neither dead nor alive. How odd it is, to think we’ve come to a place in the world where we can stimulate ovaries to over-production, harvest them from a woman’s body like apples from a fall tree, and fertilize them with the sperm from her man lover, and then hold them indefinitely, suspended in time and in ice, until there is a uterus, probably not mine, that they can call home for long enough to grow and become human, alive, long enough for them to grow eyes and ears and hair and a pair of lungs. Inside someone who is not me.

Not me, because I will most likely be on tamoxifen for 5-10 years. 10 years! We know young women with estrogen positive breast cancer do better when they stay on tamoxifen, which inhibits estrogen production, for ten years, instead of the standard five. Some young women go off this drug to get pregnant, and there are very mixed reviews about this practice. On can find studies arguing its better to get pregnant and that pregnancy decreases the rate of local and distant recurrence in young women, and one can find studies arguing the local and distance recurrence rate skyrockets with pregnancy. Recurrence is a really big deal, because its mostly the second time women get breast cancer, in the form of a recurrence, that they die. Once breast cancer spreads beyond the breast and lymph nodes to the bones, liver, lungs, or brain, where breast cancer cells like to set up shop, there is no cure.

So, I hope someday our zombie babies, the frozen embryos to be made from my swollen ovaries, will take up residence in the uterus of someone I love. It’s really so much to ask, for someone to give up nine months of their lives, hold a baby in their bellies, and then hand us the baby upon birth. We are fortunate that maybe a sister or two, and maybe a friend might be able to donate their warm and healthy wombs. But who knows if that will work out, with visa laws and flight-bound-embryos… that said, we’ve been through enough visa and border trials that if anyone can make a zombie baby into a real baby across borders and with visas, its us.

I know lots of people struggle with fertility: that is evidenced in the swanky service-for-pay offices the fertility doctor inhabits, and that it’s not easy for anyone to have swollen embryos. Many people have reminded me of this, and yet this, I think, is distinctly different. It’s not the ups and downs of living from a human body, the necessary but frustrating tribulations of human imperfection. It’s cancer, it’s deadly, it’s caused by human malfunction, human abuse, and environmental trauma. So I feel some solidarity with the women crowding into the fertility office, hoping to make a baby and throwing all those carefully socked away funds at their baby-dreams. And also, I feel nothing like them, I feel entirely out of place.

Lots of folks deal with devastating illnesses, infertility, disabilities, challenges. I don’t think its worth comparing. I know it’s entirely unhelpful to think about who has it “worse,” and what “better” is for different bodies. What I know certainly, though is this. I am insanely, imperfectly, horribly jealous of everyone without cancer. That feeling is ugly, especially in the face of “cancer is a gift” and that feeling is rough on the ears, especially when folks need me to affirm I will be OK. Jealousy is harsher than sadness, anger, and spite, and it speaks to the kind of relationality that allows us to think about who we are, we were, what we might become. Jealousy makes painfully clear that we are all implicated here, knotted together in a web of toxic, plastic capitalism. Jealousy is the feeling of capitalism.

I have no idea if I’ll be OK. And what is OK, after all? Is OK just alive? Is OK a PhD? Is OK fear of recurrence? Is OK avoiding terror of cancer in the other breast with a bilateral mastectomy even though the medical community assures me it won’t improve my survival? Is OK a baby in someone elses’ belly? Is OK a house with colorful walls? Is OK breast cancer in my bones and a prognosis? What percent is OK? Is OK having a few breast cancer buddies who get it? Is OK when my BFF comes to visit and I wish she’d never leave? What prognosis is OK? How is OK a percent chance at five-year survival?

So for now, zombie babies. We’re making them. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is.