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Breast cancer survivor awareness

Earlier today I had to link again to a post I did earlier this year regarding my take on the memes that periodically go around the social networks (Facebook is where I’ve personally seen this happening but it wouldn’t surprise me if it showed up elsewhere) and encourage women to post cryptic status messages in the name of raising breast cancer awareness. I think I’ve made it pretty clear at this point what my stance is on those memes, and the convenience of linking back to that post is one small part of why I posted it–so I won’t have to post it AGAIN.

This post is a followup to that and has to do with breast cancer awareness in general. As I asserted in that previous post, in my experience it’s pretty nigh impossible, at least in North America, to NOT be aware of breast cancer. For the last several years, I’ve found that in order to NOT be aware of breast cancer, you pretty much have to avoid going in a store or looking at the Internet for the entire month of October in particular. Shelves in American stores get flooded with products branded with pink ribbons. The Safeway I usually get my groceries from holds month-long in-store fundraisers to get people to donate a few dollars along with their purchases, so yeah, I get reminded of what month it is every time I set foot in the place, all throughout October.

So yeah, I don’t think the lack of breast cancer awareness is the problem. If anything, I think there’s so much awareness of breast cancer that it’s taken on this amorphous existence and frequently doesn’t seem to have much connection to reality. Or to the women (and sometimes men) that have to fight the disease in the first place.

This particularly goes through my mind when I see well-meaning campaigns with names like Save the Ta-Tas or Books for Boobs going around. Notice where the emphasis on those names is? It’s on the breasts. As if the breasts themselves are these independent entities that are in danger of extinction, and which must be saved at all costs.

And while I got off pretty lightly in the whole battle with breast cancer thing, I nonetheless have had it change the course of my life enough that I’m really, really tired of seeing so much emphasis placed on saving the breasts and not much at all on saving the women.

Let me tell you a bit about what it’s like to be a stage 0 DCIS patient, Internets.

It means that you have to negotiate with your workplace to take time off to go do radiation therapy. And that even if you’re young and in reasonably good health, it will be a significant drain on your energy and ability to handle life in general. If you’re fortunate, you’ll have a workplace that’s supportive of your medical needs and the simple fact that if you’re having to go do radiation therapy, this means that sometimes you will not actually be in the office. Not all breast cancer patients are that fortunate.

It means that you have to go through several massively stress-inducing conversations with your medical professionals about what exactly this means for your life. Especially if you have a family history of cancer. It means you have to spend many months trying not to flip out because your mother died of cancer, and you’ve been diagnosed at about the same age as she died, and even though you’re not particularly prone to depression or anxiety, you still can’t escape the fear of shit am I doomed?

It means that you have to have mammograms every six months, and if there’s the slightest irregularity in the results, your stress level gets to spike back up. And it means you get to go in for periodic new MRIs, too.

It means you wake up from a mastectomy to discover half of what you used to see every time you looked down is gone. You have body dysphoria because that just does not make sense to you, and your center of gravity is off, and wearing a prosthetic only helps when you’re actually wearing a bra.

It means that when you opt for reconstruction surgery, you get to prolong the months of going in for medical activity as a chunk of your back is moved around in front to build a brand new breast, and that tissue has to be stretched before a proper implant can be put in. This is not fun, and it’s not comfortable, and even once the implant is in it feels distinctly weird.

It means that when your reconstruction surgery is done, you’re going to have some big lingering ugly scars even if you’re more or less symmetrical again. Emphasis on the “or less”.

It means that because a significant portion of your musculature has been rearranged, the entire right half of your upper body is prone to tensing up in odd ways. You have to be careful about twisting in the wrong direction if you want to avoid cramps along your back or chest, and you have to go in for semi-regular massage by way of pain management. Especially during winter months when it’s cold. Or damp. Or both. Like it gets in Seattle. (I don’t so much mind the gray of Seattle winters, but I’ve gotten a LOT less fond of the damp.) And it also means that you have to be very careful not to take too much aspirin or ibuprofen, and that eventually, you have to accustom yourself to a low default rumble of pain in your consciousness. An entirely pain-free day is a blessing and a gift.

Speaking of pain management, it means you get a lot more aware of your personal pain threshholds and you still have to struggle to acknowledge when you’re cranky and stressed because you’re in pain. And you have to still periodically remind yourself that it’s okay to step back and deal with that.

It means you get to be skittish about wearing a one-piece bathing suit, and never mind a bikini, for reasons that have nothing to do with your figure or your weight.

It means that even if you have a decent paying job with good medical benefits, you are still going to sink several thousand dollars into your medical care costs. And let’s not even talk about what a cancer patient who doesn’t have good medical benefits is going to have to deal with. (Hint: see previous commentary re: the fucked-up state of the American health care system.)

It means that you get twitchy every time you see articles like this one circulating the Net, because yes, it has in fact occurred to you to wonder whether you were over-diagnosed, and whether there was any possibility whatsoever that you might have avoided three years of stress and massive surgical procedures. And then you have to just deal with it, ’cause it ain’t like you can go back and change what happened now.

And I was a stage 0 DCIS patient, Internets. Kick this up a few more orders of magnitude for every additional stage of severity a breast cancer patient might go through. I was really, really fortunate and I’m grateful for that to this day. But I’m also very cognizant of what other women I know have gone through fighting this same fight.

So I’d like to ask you all, this coming October, when you see the inevitable Breast Cancer Awareness campaigns fire up… please think about it in terms of the people who have to deal with it.

We are working women and retirees. We are writers and musicians and mining engineers and product managers and countless other professions. We are mothers and grandmothers and adults without any children at all. We are sisters and daughters and wives. We are young. We are old. And we are every age in between. We are countless colors and creeds and sexual orientations.

We are women, and we are defined by much, much more than our breasts.

Thank you.

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