As you may know, I’ve been writing a book of essays about my experience as a breast cancer survivor. Last month, I decided to publish a zine that collects some of the essays I’ve written so far, to put my writing out there and build some interest in my book.
It ended up being a very fun project (my first zine!) and although I didn’t end up with the old-school photo-copied look I originally planned on, it’s very pretty and the writing is very much the focus.
For weeks now I’ve been begging myself to write something, anything. But the words just don’t come.
It’s not that I don’t care anymore about the things I used to write about. Though I do click away from the news a lot of the time, I know I care, it’s just that my brain is usually too full with a buzzing sort of panic about my impending loss of autonomy, mobility, dignity, bodily integrity. That’s when I’m not panicking about simply dying.
I think about very little else anymore. The surgery. Researching everything I can about the surgery. Looking up and buying things for after the surgery, special clothes, pillows, anything to reduce my dependence on other people. Writing down lists of questions to ask some doctor at some point. I’m not always sure which questions should be directed to whom–the medical oncologist, the surgical oncologist, the plastic surgeon, the anesthesiologist, a social worker. Recounting to my parents my meticulous list of boundaries to retain whatever control I can over this impending horror–instructions about when they can and can’t see me in the hospital, when to give my phone back to me, who can touch or see what or how. Listing activities I may be able to do while I’m recovering–reading, writing, knitting, gaming, drawing–and making sure that I acquire everything I need for all of these things just in case something sticks. Planning out outfits that I will be able to dress myself in, independently. Asking the surgeon questions like, “Are you saying you don’t RECOMMEND that patients do this on their own, or just that they may find it uncomfortable and want to ask for help?” Because I will take the discomfort.
It has turned into a full-on obsession, and some part of me realizes it’s not healthy, but at the same time it’s also a coping method. It is easier, and probably healthier, to make packing lists than to let myself “be with” the fear, and imagine over and over being ripped open and stitched up again with tubes coming out of places they shouldn’t be and stuff that’s not supposed to be inside my body being inside of it and stuff that was supposed to be in there not being there anymore. And to be clear, I certainly imagine plenty of that. It comes completely unbidden. It’s a wild, untamable, primal fear. I’m like an animal being led to slaughter. My mind flings itself against the bars of its cage, over and over, despite the damage it does.
This is what it looks like to face down your worst, most paralyzing phobia. I used to say, half-jokingly, that if I ever required the sort of surgery that involved general anesthesia and opioids, I would refuse and simply die. Life called my bluff. I’m not dying, at least not yet.
Plenty of people have pointed out that there’s something maddeningly counter-intuitive about treating early-stage breast cancer, and that’s that it often feels like poisoning and mutilating a perfectly healthy body. I had no symptoms aside from an innocent-looking lump that nobody, not me and not the doctors who initially observed it, really thought could actually be cancer. Now that lump is gone thanks to an overwhelming response to the chemo, and I have to face the idea of having part of my young and tumor-free body hacked off so that I don’t die later. There’s also the thought that if I hadn’t noticed the lump, I might very well be dead now, or rapidly getting there.
The thought keeps going through my head: “And for what?” But I know for what. It’s so that I don’t die. That’s literally all. And though a double mastectomy doesn’t guarantee a cancer-free future, it at least offers a strong hope for one. Without it, that hope would be quite frail.
At the same time, and perhaps because I never exactly felt “sick” or thought of myself as sick, it feels like I’m sacrificing an awful lot just to have what I always naively assumed I’d have anyway–a reasonably long and healthy life. The surgery doesn’t feel like a treatment; it feels like the disease itself. I’m not healing from cancer, I’m healing from something I elected to have done to me, for reasons I can’t quite remember some days.
And yet, being the sort of person I am, I never seriously considered not doing it. Anything other than the double mastectomy seems like a betrayal of who I am, not to mention a betrayal to my loved ones who would have to spend the rest of their lives, like me, fearing recurrence. None of us deserves that kind of fear.
The surgery is a sacrifice that present me is making for future me, for some version of myself I can’t quite envision yet but will have to eventually become. That person will have accepted her new body, or at least gotten used to it. That person will, like the women in my support group, joke cheerfully about the awkward things that happen when you have no sensation left in your chest anymore. That person will maybe date new people again and find some way to explain the breasts, or not. That person will still think about cancer but not every single day.
That person will no longer believe that she’d rather die than get surgery. That person will also be much older than her years.
Don’t get me wrong, this isn’t the way I’d recommend doing exposure therapy for your medical phobia. But this is the way I’ll have to do it.
This is my longest, darkest winter, the winter time stood still. You don’t move forward when you’re fighting something like this; you’re just planting your feet, pushing back, and hoping not to be thrown off the ledge. My career is at a standstill—I have no idea when I’ll get enough supervision hours for independent licensure now. I forget the last time I met a new interesting person; it used to happen every week. I exercise and yet my body grows no stronger. I don’t really get to try and learn new things anymore. Everything I’d planned to do—practicing on the motorcycle, starting a vegetable garden, volunteering at the humane society or the botanical garden, planning a future coaching business, looking into selling my bread at the farmers market—is now delayed indefinitely.
That I knew something like this was probably coming doesn’t help much. For the two years leading up to my diagnosis—the two years since I moved to Columbus—I loved my life so much that I knew it couldn’t last. “Something’s going to happen to fuck this up,” I thought. I’d spent most of the first 24 years of my life pretty miserable, and now I finally wasn’t, and it couldn’t last.
And it didn’t.
And yet, unbelievably, it also did.
There is so much joy still in my life, if not every day then enough to carry me through. I spend entire days with friends sometimes, or else catching up on my library books with the cats cuddled up against me. My parents and sister and I laugh till our sides ache as my brother demonstrates parkour on the lawn in front of my house. Letters and cards arrive weekly in the mail from distant friends, some of whom I’d honestly thought had forgotten me by now. The teapot whistles urgently on the stove. Snow falls, and then rain, and then more snow again. There’s an orchid show at the botanical garden, and I went with my camera, struggling to kneel to take the pictures and stand back up but doing it anyway. It’s 8 degrees, but we go hiking anyway. The regulars at my yoga studio are starting to recognize me, and to know what the hat means. My older brother in London sent me a Switch for my birthday; now when I close my eyes I see beautiful scenes from Zelda instead of body horror. My body aches unbearably sometimes from chemo, so people bring me things. My oncologist calms my panic with his presence the moment he enters the exam room. A coworker finally learned to text just so she could check in on me when I didn’t answer the phone.
And, outside, the days slowly lengthen, and the January chills are gone. Three seasons will have passed by the time all of this is even on its way to being over. The mint in my backyard will have grown back. It has a way of enduring.
A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.
If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.
The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.
I hate these campaigns for many reasons. First of all, they make breast cancer all about boobs. Yes, it has “breast” in the name, but reducing an illness as complex and life-shattering as breast cancer into a cutesy “save the boobies!” campaign seems callous and inappropriate.
I’m not sure everyone would even agree that the prospect of losing your breasts is the worst thing about breast cancer, and yet that’s what these campaigns almost universally target. It’s not the “boobies” or “ta-tas” that need to be saved–it’s the human beings who have breast cancer.
It’s even worse when the campaigns are created by and/or targeted at men and involve that hint-hint-nudge-nudge assumption that men should care about breast cancer because men love tits. Never mind that men can get breast cancer too, and never mind that men care about breast cancer not (just) because they care about boobs, but also because they care about their friends, girlfriends, wives, mothers, sisters, daughters, and etc. who might get breast cancer, or who already have.
Campaigns like these also completely ignore women who have chosen (or been forced to) undergo mastectomies. If breast cancer research and awareness is all about “saving the boobies,” does losing your breasts mean you’ve lost the fight?
The text at the bottom reads, “One out of every eight women develops breast cancer in her lifetime. Early detection helps recovery. Get yourself examined before it’s too late.” So there you have it. If you get a mastectomy, you’re “making yourself ugly.”
This is all to say nothing of Susan G. Komen for the Cure, the hypocrisy and reactionism of which should by now be well-known. (Incidentally, the former Komen executive who was responsible for that move was not content with merely that; she just had to write a book-length screed against Planned Parenthood, as well.) This unethical organization seems to be the beneficiary of most (if not all) of the sexualized ads I’ve seen. I still refuse to give them a single cent, which is difficult given how easy it is to accidentally pick up one of those pink-ribbon-branded products at the grocery store.
On the bright side, this is a great opportunity to explain what feminists mean when we prattle on about “objectification” and “sexualization,” which are closely related concepts that often (but not always) occur together. Objectification is the reduction of a person to their body parts (usually the sexual ones; hence the frequent co-occurence of objectification and sexualization). An advertisement that objectifies women might show, for instance, a single female leg in front of a flashy car, or a woman lying in a martini glass–literally like an object to be consumed. Sometimes men are objectified too, but that seems to be rarer. Ads that objectify people often don’t show their faces (or eyes), thus making them seem less like people and more like bodies.
Sexualization, meanwhile, is when a person (again, usually a woman) is represented in such a way as to arouse the viewer or otherwise connote sex when the actual purpose of the representation has nothing to do with sex at all. You wouldn’t call pornography “sexualization” because the purpose of pornography is to depict sexual acts and to be arousing. But when an advertisement designed to sell cars or alcohol–or solicit donations for breast cancer research–portrays women in a sexual way, that’s sexualization.
The objectification and sexualization of women in the media has a great deal of negative effects, both on an individual level–for the people who view them–and on a cultural level. Check out the work of Jean Kilbourne if that interests you.
However, I am not a marketing expert. If I were, and if I were charged with designing an ad campaign that elicits as much attention and donations for breast cancer research as possible, there’s a good chance I would feel compelled to create an ad like this, because there’s a good chance that this is the kind of ad that works best.
Hence the misanthropy I mentioned earlier. Marketing people know what they’re doing. If this is really the best way to get people to pay attention to this important cause, I would say that not using ads like these is even more unethical than using them–at least until we shift our culture enough that we don’t need them anymore. But that still means that we’re choosing the lesser of two evils. I would rather more money went to breast cancer research than less, but I would also rather we stopped reducing women to their erogenous zones in our media.
After all, I don’t agree with this rubbish that men are “programmed” or “hardwired” by biology to be obsessed with breasts, at least not to the level that our society seems to think they are. As I already discussed when I wrote about public breastfeeding, the sexualization of breasts is not universal to all cultures and time periods. Even if “sex sells,” breasts don’t necessarily have to always be part of “sex,” and I think it would be beneficial to our society if they were not.
If you have ever seen a bunch of women posting Facebook statuses with a random color, or a location where they “like it,” and felt a mix of confusion and frustration, you are not alone.
These memes are part of an effort for breast cancer “awareness,” a word that I use cynically here and only in quotation marks. The color meme referred to women’s bra color, and the location one referred to where they like to put their purses. Of course, they made it sound sexual to attract more attention: “X likes it by the bed”, “Y likes it in the closet,” etc.
Now, an acquiantance of mine (who also happens to be the Director of Health Promotion and Wellness at Northwestern University, and therefore isn’t entirely ignorant about these things) has reported that this stupid trend still has not died.
Perhaps even less sensically, the latest iteration of this meme is people posting stuff like “is going to New York for five months” or “is going to Las Vegas for twelve months,” and this, too, is supposed to elicit friends’ queries and be met with the response that it’s for breast cancer “awareness.”
As anyone with even a modicum of critical thinking skills can tell you, such a status, when finally deciphered, tells you exactly one thing: “There is a thing called breast cancer and you should know about it.”
Yes, yes there is. But could we finally get beyond that?
For instance, here are some actual facts about breast cancer:
Women over 40 should have a mammogram once a year to screen for breast cancer.
However, young women can get breast cancer too; women over 20 should have a mammogram every three years.
There’s tons of research going on regarding risk factors for breast cancer. As with virtually all illnesses of any kind, eating well, getting enough rest, exercising, and maintaining good mental health are all important. With other possible risk factors, though, it’s much more up in the air. If you see an article claiming that x, y, or z is going to give you breast cancer, find the original study and read it carefully. Ask doctors about it. Educate yourself.
If you’d like to do some actual good, why not spread this information around?
Besides that, here are some other ways you can help:
Volunteer to provide support for people battling breast cancer. (This is even easier if you know of such a person. You can help by driving them to doctor’s appointments, making them meals if they’re too tired, babysitting their kids, or just being there to listen.)
If you want to go beyond simply giving money, participate in charities’ fundraising events, such as Susan G. Komen’s Race for the Cure. That way you get to raise money while meeting other people who care and physically showing your support for survivors and people battling breast cancer.
If you’re politically liberal, be an activist for government initiatives that fund cancer research, education initiatives, support for cancer patients, expanded insurance coverage, etc. One good place to start: ask your representative to support H.R. 3067, the Accelerating the End of Breast Cancer Act of 2011, which proposes an initiative to end breast cancer by 2020.
If you’re studying medicine or biomedical engineering, consider making cancer research your focus. Or work as a research assistant in a lab that studies cancer.
Buy products from companies that donate to breast cancer research (but beware of pinkwashing).
Similarly, if you happen to own a business or want to start one (and I know many of you Northwestern students do), consider donating a percentage of your profits to breast cancer research.
If you’re going into journalism and you’re interested in health, consider writing about breast cancer. Not everyone has enough knowledge to decipher academic articles; you can be the one who makes that information accessible to those who need it.
As you can see, some of these require your time and money. Others do not. The few seconds that it takes you to type your stupid status could be better spent posting a link to an important recent article about breast cancer.
And now, I get it. Cancer is a terrifying thing. The amount of information available about it could fill books upon books, and some of it is constantly going obsolete or being revised. Even I felt a bit overwhelmed just looking at the few websites I looked at to research this article.
I also get that when your friends are posting oh-so-funny things on Facebook, you want to join in the fun. Trust me, I was in middle school once, I know.
But I have some unfortunate news for some of you: neither I, nor breast cancer survivors, nor families of breast cancer victims give a flying fuck what color your bra is or where you like to put your purse, cutesy sexual innuendo notwithstanding.
If you’re old enough to make sexual innuendo, you’re old enough to educate yourself and others about breast cancer (and, for that matter, anything else you think people should be educated about). Let’s stop selling ourselves short here.
*edit* Another reason I just thought of to hate these memes–they are generally restricted to women only, and women aren’t “supposed” to tell men what they mean, thus constructing breast cancer as a “girl thing.” Not only do men witness their friends, girlfriends, wives, mothers, daughters, sisters, etc. fighting breast cancer, but some men actually get breast cancer, so it’s not only a women’s problem.
Anyway, there is enough of a stigma placed on men who get breast cancer without its promotion through this meme.
Update (2/2/2012): In case anyone’s going through my archives and reading old posts, let it be known that I officially withdraw my support for the Susan G. Komen Foundation in light of its defunding of Planned Parenthood.