Uniform

Once upon a time, while walking a dog, I ran into an acquaintance and he introduced me to his wife. During the chat, it came up that I was a “survivor.” No lie, her immediate response was, “but you aren’t wearing your pink!” Actual quote—those words are seared into my brain.

I swallowed my irritation and said something inoffensive about how Pink does not really represent breast cancer in my opinion.

We left it at that. These are acquaintances after all, the kind of people to have polite, how-about-this-crazy-weather kinds of chats with; it can be hard to have deep conversations as a dog walker while trying to control barking, pulling, wriggling pets on a leash. I do not think my words about my disdain for Pink went far. I went on with daily tasks, and the incident haunted me the rest of the day, hell, it haunts me now. It was a one-two kick in the gut, that reaction, that statement. First (BAM!), the assumption that I had that particular cancer, and second (POW!), the assumption that as a result of having that cancer, I am obligated to don the Pink uniform.

Is it any wonder folks with other kinds of cancer, especially gynecological cancers, are so sick of breast cancer? I stood there, my female-with-cancer self, so within a split second the assumption was made I had breast cancer, because of the loud messages of Pink that breast cancer is the only one worth paying any mind.

To be fair, breast cancer is way more common than any other cancer except lung, and no one ever assumes lung cancer, at least for a younger woman with no cigarette stuck in her lips. So yes, most people are going to safely bet the favorable odds and assume a female “survivor” had breast cancer.

OK, I can maybe give her a pass on that assumption. But the second punch, aaarrrgghhh.

I had breast cancer, and therefore I MUST wear PINK every damn day? Really?! It was like, not only MUST I join in the Pink army, I have to SHOW IT by donning the uniform? Do folks really expect that?

Here’s the punchline to this story: the woman is a semi-retired nurse—who teaches intro to nursing classes at a local college. So I—unfairly, perhaps—expected more and better. I expect any medical professional to be a bit more savvy—would not their experiences, even for non-oncological nurses, inform them that there are all kinds of cancer? Don’t they see a more varied swath of patients and ailments? Am I really the first breast cancer patient this nurse encountered who disliked Pink?

This incident took place about a year ago. I did not write about for a few reasons. I was very busy, and in the few moments I did have to write a post, I was often distracted by other topics. Plus, I figured most breast cancer patients who are not fans of Pink have similar stories.

So why write it out now?

I keep remembering the incident because to me it seems almost like a fable or tale, telling what it is like to be a breast cancer patient–except it really happened. And the message of the story is simple: this is what the general public expects of breast cancer patients. We are to join the army, battle, and don the pink uniform—there is no room for different opinions, questions, challenges, or anything. Patients who do not conform just befuddle others. Those of us here in Cancerland know that there is no one right way to do cancer, but the general public does not understand this.

The recent months have been full of celebrity cancer stories, setting standards for ALL cancer patients, and much has been written about them—and yes I’ll contribute to all that chatter (when I get a chance to think and write). I know I will refer back to this story again. While I and others know it is acceptable to do cancer differently, that is not what the story on TV tells. And so, we are expected to don the Pink Uniform literally and figuratively.

365

Sometimes I think the universe gives me the middle finger at random times.

The previous post, Some Word Problems, was about a few words and phrases wearing me out recently. It took a long time to write—I kept going down many paths, packing in too many topics that annoy me. I struggled to keep on point and wound up making a list of other possible blog posts. Finally I got it down to a somewhat manageable and readable ramble, posted it, and immediately embarked on the rest of my busy day.

As I’ve mentioned before, I live in a rural, yet beach resort area, with a growing retiree population. This means lots of rural roads, traffic congestion—not just in the summer—that causes me to get stuck behind some cars for miles on end.

So what do I get stuck behind, just after posting a rant against the phrases about awareness and support? A large SUV, with a pink ribbon sticker over the left tail light bearing the phrase “breast cancer awareness”, and over the right tail light, a sticker bearing the official Komen version of the ribbon with the word “supporter” under it.

No, no, no…I’m not trying to criticize or belittle the car’s owner. Clearly this person’s heart is in the right place, and has made his or her choices about Pink. S/he has no issue with it—I do. I think the ubiquity of the ribbon has damaged, and will do more damage, to the conversation and the “cause” and to women in general. The damage of Pink for this specific Curmudgeon—well, that is what most of the posts on this blog are about.

But I don’t want to get into that.

It was just an odd moment that made me snort with grim laughter. So often, many breast cancer bloggers point out in the throes of Pinktober–hey breast cancer is every day for us, not just one month. Seeing those stickers I realized that it isn’t just the disease itself that is every damn day. With these stickers and other items folks buy and adorn themselves, their cars, their….argh…everything, with—there is no escape from Pink ribbons, 365 days a year. For me, the desire, the need, to spread the truths about breast cancer that Pink omits, is a 365 days a year task.

Or maybe the universe was just giving me the finger.

Some Word Problems

I was fairly lucky this Pink season to not be too irritated by all the Pink products and events. Sure I ranted here about one particular subset of events, but mostly I’ve been successful at just turning the page, clicking away, changing the channel. But I’m a Cancer Curmudgeon, so of course I’ve found something else to be annoyed about.

What has been plucking my nerves over the last few weeks is the repeated use of certain words and phrases. One certain word, when attached to other words, has been especially upsetting to me pretty much all year. That word warrants its own special, lengthy, likely unpopular post. Hopefully I’ll get around to it soon—time and energy have not been my friends of late.

So here are some words/phrases that made me weary last month:

Awareness

Well, duh.

Many bloggers have written excellent pieces on the need for education rather than awareness, that full awareness has been reached when the NFL wears Pink, and so on. I agree, and have little to add. The word is meaningless to me.

I guess I especially hate the word awareness when it is used in arguments against critics of Pink—hey, don’t criticize pink ribbons because: look how successful, we can talk about breast cancer without shame! I’ve said this before: I don’t wanna talk about it; I WANT TO NOT HAVE IT.

What is the goal of awareness anyway? From what I absorbed from Pink propaganda prior to diagnosis, it seems to be that one simple message: get a mammogram to detect cancer early, fight hard and put on a smile and the pink uniform, and then survivor status is achieved, and it is all over—all is well. My experience—being 1 in 233, not 1 in 8 because I was 39 years old, being ER/PR negative and HER2 positive, having a false negative mammogram, now knowing the likelihood of recurrence—just did not fit into the story. I felt, and still feel, I was spectacularly unprepared.

Hindsight being what it is, I certainly wish I’d known then…ah, you know. It would’ve made the frenzied time of diagnosis a little less confusing, trying to learn so much backstory, UNLEARNING the messages I’d swallowed each October. Plus, I don’t think I’m alone in thinking that the early-detection-is-the-best-shot-for-survival is not good enough. I want better odds for not getting cancer again, even after that magical 5 years out number. I want prevention for everyone. Need I say more? For all the hoopla of awareness, I still see breast cancer as pretty grim (duh, I’m a curmudgeon after all).

The whole story is not being told by the mainstream Pink information distributors. I admit, before I got cancer, I did not “buy it”, but I certainly did not do anything to find out what was not being told. I’m not sure most people are able to understand all the little details about breast cancer—people like sound bites and the whole story of cancer is too complex for quips. And certainly many are unwilling to know that breast cancer is anything but the festive version as seen on TV (eat right, exercise, blah blah blah to help prevent it, curable and never the metastatic kind that leads to death, and chemo is a party). But good grief, even if all the little details don’t fit into a perky slogan, don’t pretend that breast cancer is just a singular disease with a happy ending. The story that folks think they know because of awareness is not my story, and I get tired of trying to explain it: yes I had a mammogram, it failed; I kept going for infusions after chemo because I had a weird type of cancer so I needed a drug called Herceptin; no I don’t need Tamoxifen; and no I’m not all done, I still see the oncologist because it might come back. (Note—I don’t think HER2 positive cancer is weird, but explaining to the uneducated, even other breast cancer patients, well, it might as well have been weird.)

My story, and many stories, cannot be distilled into a slogan. Slogans will never go away, I get that. But how about just a little asterisk next to the slogans: “not applicable to all breast cancer scenarios”. Is that so wrong? Don’t ignore the complexity!

Show Support/Support Awareness/Support Breast Cancer

Another set of meaningless terms.

What does it even mean, to support Breast Cancer Awareness? Like, “oh yeah, telling people about breast cancer, that’s good, I support doing that?” And clearly people do not even know that what is being told about cancer is not the whole truth (see section above).

I KNOW many have complained about that stupid question asked by cashiers at various check-out lines: “would you like to donate to support breast cancer?” I try not to judge cashiers too harshly; I’ve worked retail, I know what it is like to repeat the same question over and over. It gets so monotonous, of course the words get shortened—but this is a time when words matter greatly. I cringe when asked if I’d like to support breast cancer. And in the case of the stupid No Bra Day graphic a few years ago, the one with the woman raising her black bra above her head and the slogan on the bottom “support breast cancer”, I just have one word: unforgivable.

I’m afraid to take on the “show support” issue in this post; I want to concentrate on words that annoy me. The need to not merely support a cause, but to SHOW off that support, makes me uncomfortable. A life working in the service industry and a non-profit managing volunteers, has made me a bit jaded. So I’ll tackle this subject another day—maybe. I know it is a touchy subject. For now, I suggest checking out an interview Gayle Sulik participated in earlier this year about the Boston Strong branding. The transcript puts into words some of my thoughts that I’ve had, long before getting breast cancer. Those folks who were interviewed pissed off many listeners, I’m sure.

Instead of “showing support” for “awareness”, may I suggest just supporting actual patients? Donating directly to reputable organizations like Metavivor? Or just helping out the nearest cancer patient with the everyday tasks that can be so overwhelming during treatment?

Every Single Slang Term for Breasts, Especially Boobies

Look, I read lots of bloggers who use the word boobs in the blog name, a Twitter name, or a tag line on the blog, FB page, whatever. I get that “boobs” is a recognized word, not really offensive to most. Hey to each their own. I’m not offended exactly by that word or the others, but I’m not a fan. I had breast cancer. Not titty cancer. My ta-tas were not saved. I saw my cancer; I did not find it by feeling my boobies.

More than I want to, I see founders of the organizations with names that include these slang terms hotly defending their organization names and mission statements. I understand that the intention is to raise funds that help patients, that a kicky, fun name is meant to attract younger, or male, attention—although the names imply that ta tas are the only thing meant to be saved (not lives). I understand that feeling boobies is meant not to support SBE but to encourage familiarity with one’s own body, so changes that might indicate disease will be noted sooner. Hearts are in the right places, but I still don’t like the names and slogans. I cannot quantify my dislike. There are many more talented bloggers and journalists who can explain the harm that results from the sexism, the sexualization. I agree, and cannot add to all that has been said before.

All I can say is—I don’t like the slang slogans and organization names, and I don’t have to like them.

Yes, many, MANY times it has been pointed out to me that the sexualization I loathe has benefited me. Even those “tasteful”, professional corporate ads featuring beautiful actresses and models naked with their strategically placed arms garnered donations that went into the development of Herceptin, which might help me live a long time. Someday, I will write a post about how I try to reconcile this in my mind: being grateful for benefits I’ve received from the way breast cancer has been sold with sex. Some interesting incidents this recent Pinktober have made me think hard about this quandary.

I can be called ungrateful, whiny, prudish—maybe it’s true, but it is not how I view myself. I just think of myself as a patient who wants to be treated with dignity. The slang words and the way they are used in Pinktober events just don’t seem like breast cancer is taken seriously anymore. There are millions of examples out there described by bloggers sick of the sexualization. The worst I personally witnessed this year? Oh just a little “walk” in April. Pictures taken at the event I stumbled over on Facebook featured women wearing hot pink bras and panties pulled over their athletic apparel. It reminded me of a bachelorette party, not in a good way. Hmph, breast cancer fundraisers as bachelorette parties…I hope some smart blogger with education about feminist issues can explore that. Do women have so few opportunities to “party” and let off steam that breast cancer parties are now our “thing”, like bachelor parties or tailgating? I mean, it seems like this to me, but maybe I’m the only one.

I’m not suggesting anyone stop using the slang for breasts, it is an accepted form of vernacular, fine, it is my problem to get over. I have no alternatives  that will be as successful as using sex to sell a disease, and like I said, I’ll confront the issue later. I’m just a little tired now, at the close of Pinktober.

OK I’ve rambled on too long about words that irk me, so I better end it now before I find more!