lumpectomy – anotheronewiththecancer

How About a “What Cancer Really Does to Breasts Day”?

I wasn’t going to write about No Bra Day, because 1) so many other blogs I read have said most of what needs to be said, 2) why should I give it more exposure and attention, and 3) I wrote an overly long, overly wordy piece this summer already, back when there was this other No Bra Day (how many are there?!). The earlier piece, I Don’t Want to See It, is mostly crap I wish I had not written, only the final 5 or so paragraphs are worth reading, and some of the sentiment of those will be repeated here.

I changed my mind because as I started mentally ranting I realized that ignoring it won’t make it go away any more than giving it more attention will (more on this theory, keep reading). It deserves all the outrage that can be had.

Who the hell organizes these No Bra Days? There is no organizational name on that graphic (everyone has seen it I’m sure), so I guess it is just some idea someone passed around on Facebook (sorry, I still cannot have a FB page for personal, non-cancer related reasons, so I’m dim on Facebook things). How the hell does it benefit anyone? Don’t bullshit me and say it raises awareness, especially when the top line of the graphic reads “support breast cancer”. Sounds like the purpose of the day is to increase the incidence of breast cancer—the graphic doesn’t even bother to discuss support for patients in any way. It’s just another excuse to sexualize a disease, and to be childish and talk about boobies. Again.

What I am saying is divisive and angry; I know and do not care. I am so fond of the quote “just because you’re offended, doesn’t mean you’re right,” (Ricky Gervais) and I know that just because this event and the participants offend me, I’m not right. Lots of folks, including breast cancer patients, think all this is just fine, so it is doubtful that this event will cease to exist. But I AM offended and right or wrong, I’m going to gripe about it.

Setting healthy ta-tas “free” doesn’t support this breast cancer patient, again, not that this event even bothers to pretend to support any patients, it is supporting breast cancer, remember? It just reminds me of what cancer did to my breasts, and to other breasts. The scars, the ugliness, the pain and surgery. Need I go on? While I can begrudgingly accept that people who donate or participate in Pink have good hearts even if I hate Pink, I have NO appreciation for anyone involved in No Bra Day. Do NOT expect any gratitude or applause for the participation from me. I’m glad that these women are still healthy, still have breasts unmarred by cancer, but I really do not want to be reminded of what I lost. To those who organized this No Bra Day, I consider you insensitive, thoughtless jerks.

I know this day, the participants, and whoever organized it will get praise from many corners—but a quick scan on Google and other blogs gives evidence of some criticism about this event. I wish there more outrage about it. While I have no hope these days of the Pink machine slowing down, I yearn for more concrete ways to express my extreme dissatisfaction. This No Bra Day is one of the most egregious examples of how a disease has become the plaything of an adolescent, boobies obsessed culture. If I were rich, I’d buy a million very covering and very supportive bras and throw them—well, somewhere, since there is no physical headquarters for this idiotic nonsense. Maybe I’d just scatter them about a big city street, to stop traffic and get everyone to see how at least this one breast cancer patient really feels. Sure, that would just be me throwing a childish tantrum—but the organizers have proven that they are not emotionally or intellectually adult enough to understand the lengthy, smart essays criticizing the event.

Why doesn’t someone come up with a “What Cancer Really Does to Breasts Day”, gathering and presenting all the pictures of so many bloggers (myself included, I would do this) in various stages of lumpectomy/mastectomy, reconstruction or no reconstruction? There are certainly plenty of said pictures on the internet. I get why established groups or projects cannot do this—with establishment comes the need to “play nice”. Being a socially awkward, complaining Curmudgeon—in real life and in the blogosphere—means I seem unable to play nice.

I’m sure many would find a “What Cancer Really Does to Breasts Day” objectionable and offensive (see this is where I can use the Gervais quote to my advantage). But here’s the thing: not wearing bras, or even those “tasteful” Pink ads featuring topless, strategically covered, healthy-breasted models for that matter, do nothing to make anyone understand the reality of breast cancer—other than show off what to those who objectify boobies will be “missing” should cancer afflict any of these women. The current socially acceptable image of breast cancer is the bald-headed woman in a pink t-shirt at a run or walk, smiling and being strong. To me it’s like a sick before and after scenario: women before cancer can be sexy and flaunt naked breasts for cancer awareness, women after breast cancer surgery need to keep covered, need to become unsexy soldiers to admire for bravery, but not to be desired.

Seeing what breast cancer is capable of, and what women who’ve had scarring surgery are capable of, seems more logical and helpful to me. On a personal level, it certainly would’ve helped me when I was recovering from surgery and follow-up radiation, wondering what to do. Instead I saw bikini clad women in ta-ta breast cancer ads, and felt horrible, my emotional wound constantly re-opened.

I loathe the battle language in cancer, as I’ve mentioned often enough throughout my posts. What I hate most is that it is used mainly to blame “soldiers” who’ve “lost their battle with cancer” because they “didn’t fight hard enough.” I rarely see war talk applied in terms of a grand battle plan. Why isn’t it applied here? A good general goes into battle prepared, knowing as much about the enemy as possible—their weapons, strategies, the size and the location of the enemy, and what the enemy does to prisoners. Would it not make sense to show what the “enemy”, breast cancer, does to these “soldier” women? How can this proverbial “battle” be fought if everyone is refusing to acknowledge the “battle scars”? Oh right, we’re not supposed to be victims or prisoners, cancer happens to us, but there should be no lasting mental effects, and no one wants to see the scars (as the summertime fracas with Facebook and the surrounding conversations proved)—we either win or lose, and it’s all on us, even if the weapons (medicine) fail the soldiers, no matter how hard we fight. Yes I’m being sarcastic.

This mass delusion of only showing healthy breasts in regards to breast cancer has got to stop. Yes, it is good to think positive, to dream, and to champion the bright side of life—even if a Cancer Curmudgeon just won’t do that. But to completely ignore the reality, to not face the ugliness or pain cancer brings, I assure everyone, it doesn’t make the ugliness or pain cease to exist. Furthermore, wouldn’t seeing pictures of women ALIVE after scarring surgery be, I don’t know, positive? I remember being told on HuffPo this summer that these scars should not be shown. Hope she never has to go through it, hope she never has to see that ugliness in the mirror, hope she never needs to see my example of one who turned an ugly scar into a triumph.

I prefer to know what I’m up against and I’m tired of a socially acceptable conversation about cancer in which everyone covers their eyes and ears, singing “la la la”, like nothing bad ever happens. Sometimes, ignoring the bad stuff only results in a sucker punch later.

Only three types of people tell the truth: kids, drunk people, and anyone who is pissed the fuck off.” –Richard Pryor

Sometimes people don’t want to hear the truth because they don’t want their illusions destroyed. –Nietzsche

I Succeeded In Redefining Beautiful Breasts, For Myself Anyway

NSFW

A/N –This is the final part of my tattoo-instead-of-reconstruction story, click links for first parts. I’ve been lazy about finishing it, and now I realize I did not have the clear focus to say what needed to be said. I just got that focus.

Former Grunge Girl Attempts to Redefine the Idea of Beautiful Breasts Part 1

Former Grunge Girl Attempts to Redefine the Idea of Beautiful Breasts Part 2

Former Grunge Girl, Yada Yada Part 3

The band’s logo, the idea behind the tattoo design

I’ve renamed the page that contains pictures of my non-reconstructed breast after lumpectomy and after tattooing to make a very important point: The Right Choice For Me – No Reconstruction. Let me, the Cancer Curmudgeon, state for the record, unequivocally, in the event I’ve not made it clear enough, that yes indeed, this is a very personal choice, and mine was perfect for me. I love my Red Hot Chili Peppers band logo tattoo. My tattoo in lieu of replaced nipple looks fabulous in and out of clothes. I’m very happy about my choice. I made the right choice for myself and I’d do it again in a heartbeat.

This is not a comment in any way on others who’ve elected to reconstruct. I simply want to reaffirm that my choice is right for me, and it might be for others as well. The point of all this is to reiterate, as I and many others have said before, there is no one right way to do cancer.

What brought this on? Commenting on HuffPo, of course. When will I get it through my thick head to avoid that site at all costs, even when other bloggers I like post links to it?

A few days ago I read some HuffPo blogger’s essay describing in detail her reconstruction. That’s great, there are a lot of these stories of mastectomy, expanders, reconstruction and etc. on blogs I follow. Hell, nearly all the comments on the essay itself included additional personal mastectomy stories. But stories of non-reconstruction seem a bit less prevalent, and therefore I’ve had to work harder to find them. I mean, sure, there is P.Ink on Pinterest, but that is pictures, mostly, the stories behind are not there (or they were not before, keep reading).

So in the comments, I said:

“I wish more shared their decision to NOT reconstruct, as I have done.”

I thought this statement expressed a simple wish, not a lament that I’d regretted my decision. Here is a response to my comment:

“Why? I can’t imagine not wanting to look good in your clothes and feel good about yourself. It’s also a very personal choice.

I lost one to cancer and one for preventative measures. I am very happy with my reconstruction. Originally I did not intend to have my breasts replaced but after talking to women who had done it, I changed my mind. Like the writer said, the physical impact is minimal, it’s a fairly minor surgery. And the mental consequences are only what you make them. I chose to accept it as over and done with. Every woman should aim for that attitude. It’s just not that big of a deal.”

(My response to her is a condensed version of this post.)

Where did I say in that one sentence that I thought I did not look good or feel good? Where did I criticize anyone’s choice to get reconstruction, just because I’m curious about different stories? Why did this woman assume that any woman who opts out of reconstruction looks and feels bad, and that this bad feeling was the motivation behind my comment? The third sentence, in which she acknowledges that it is a personal choice, does not make up for the judgmental tone of the previous. To me, in my irritated state, it implies that the ONLY presumed way a woman can look and feel good about herself is to have replacements. It negates her following statements about mental consequence and attitude, which again, assumes that any woman who elects to not reconstruct must not be happy—like I’m just sitting here, crying over my scar, because that is the mental consequence I’ve chosen. Again, read the links above to understand fully the path to my decision.

Granted I might be a tad unfair here, she does not know me or my blog, or the story I’ve documented on my blog. But, again, that’s just it—she doesn’t know “me”; it was just a comment from another reader, one she has no knowledge of. I’m stupefied that anyone would just automatically assume some random reader (in this instance, me) made this comment out of being unhappy with the choice, would NOT have done something totally different—like get a tattoo—and do it on purpose and LIKE IT, and not consider many other women might also have made unconventional choices and were happy about them. Seems there is a whole world of cancer patients out here that refuse to fit into any a narrow world view. I happen to be one of them, and I’m blabbing my story.

Of course, her opening shot of “Why?” says it all. Not only does she not think anyone could be happy doing anything other than reconstruction, she doesn’t think those who’ve opted out should even speak up. “Why” she asks, as if we do not even deserve a voice, especially since she assumes that voice to be only whining about our “wrong” choice.

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I HATE breast cancer, that I had it, and that it damaged my breasts, anyone’s breasts. The pink ribbon’s “tyranny of cheerfulness” (Samantha King, “Pink Ribbons, Inc.” film) demands women conceal the sadness that can accompany loss of breasts falsely presents breast cancer as a party, whose attendees are warriors who never falter. I especially hate this notion that women who have mastectomies “just get new ones”, a comment I’ve seen/heard mastectomy patients REALLY condemn. I hate the save the ta-tas culture that blithely dismisses the lives in need of saving with that slogan, and that to save those lives ta-tas usually need to be lost, making the slogan a total lie. Indicating the loss is “no big deal”, to me, is incredibly dismissive of those of us who’ve really struggled and mourned our breasts, and by reading numerous other bloggers’ stories of mastectomy and reconstruction, sounds like many women I admire mourned their breast loss, and have written about it quite well. See Nancy’s Point and Chemo-brain, just for starters.

Another thing to consider in the story of how everyone does cancer: some folks have better emotional support and tools. Or some of us know the best way to deal with anger, sadness, and negative emotions is to let them out, not submerge them. And some folks have some incredibly tough personal situations in addition to cancer which can make the experiences much more difficult—it isn’t like every other problem in life ceases during cancer. If anyone is lucky enough to have a no big deal kind of cancer experience, great; now, stop lecturing everyone else. Stop telling others what kind of attitude is appropriate, because some of us choose to point out the dark side of breast cancer because we want to help the patients coming up behind us, rather than just glibly telling others to improve the attitude. And certainly stop assuming knowledge of others’ extenuating circumstances beyond cancer—it greatly influences the cancer experience—it is no one else’s right to determine for others what is or is not a big deal.

I may hate what cancer did to my breasts, and I once mourned the damage, but I love what I did to reclaim them, to own my scars and to own my experience, to make my cancer experience absolutely Cancer Curmudgeon-y. My scar and the fact I had cancer are a part of me now. Just like the time I got hit in the face with a clothes hanger, leaving a dent at the top of my nose. Just like the time I dropped a very large, heavy piece of glass on my foot which has left my left toenail forever screwed up. All of this is a part of me. So I took the breast surgery scar and used it as a backdrop, a canvas, if you will, that reveals even more important aspects of me than my cancer status— which is a lifelong love of GREAT music. For a year I avoided looking at my body, my scar, I just hated it so much. Now, I catch sight of my scar, I smirk, and laugh at the anti-reconstruction rebel in me, the late bloomer/formerly-uptight-woman-worried-about-how-a-tattoo-would-look-at-40 me who finally got a 90s tattoo, two decades later. I think about RHCP bassist Flea, one of the greatest, or maybe THE greatest, bass player of the rock era—sorry Geddy Lee, John Entwistle, John Paul Jones, and Les Claypool. Oh, well, lookee there—I’ve used my cancer scar to jump off and think about things far more important and interesting to me than my case of cancer. Mental consequences, indeed.

(Source: around---the--world) — (Source: around—the–world)

I pondered in a recent post about folks judging others’ “unnecessary mastectomies” what those of us making our choices public could and should expect in terms of criticism and applause. I concluded that it does not matter if it is tens or millions of people who know of any of our choices, no one has the right to judge decisions of others that only impact the person making those choices. I also acknowledged that it did feel good to get the compliments. So I pause here to thank anyone who has liked my numerous posts on my story and pictures, and for all the wonderful comments. I thank women who’ve shared their non-reconstruction stories in comments on my blog. I thank other women who’ve told their stories, anywhere. Mostly, I especially thank tattoo artist Eric, who helped me with the concept and design of the tattoo, and who made that particular section of having cancer the only good days in the whole mess. Visiting him for the first time to pitch the idea and getting an “I love it” response—well if there were ever a cure for my cancer blues, that was it. Going back to get the work done, having him tell me that he was so glad I wanted to do it, because he wanted to execute such a cool idea—it was a great feeling to be the source of an excellent opportunity, to make something good out of bad. I hated being topless for 15 minutes for those 30+ days getting radiation—I hated the whole radiation experience. But lying topless for 3 hours to get the tattoo, I loved that. I cannot express in words why this is so, but the fact I hated one and loved the other probably says more than I even realize.

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I stared writing this post over 5 days ago—my life got very hectic and it was too much trouble to sit down and finish. I began in a fit of pique at the response to my comment, but by now I’m not that annoyed anymore. More like, just rolling my eyes at the ignorance of it all. It is this ignorance that compels me to finish and post this, rather than abandon it, which I considered. Things may never change; people will never stop judging each other, will never stop thinking that everyone’s feelings and actions should be exactly like their own. But I don’t have to like it, and I can speak up as long as I have the energy and will to do so. If this rambling tale helps even one woman someday realize she does not have to go with the status quo if it doesn’t work for her, then I’ve done alright.

This incident inspired me to revisit P.Ink on Pinterest, and revisit my own neglected boards there (oops!). I’m not much for joining groups or picking one breast cancer organization as better than others—I am still a Cancer Curmudgeon after all—but I think I’ll do this. I asked to submit my pictures to P.Ink, and received a wonderful email informing me that they are adding a new dimension—interviews to get those of us with tattoos to share our stories to inspire others, to let others know that getting tattooed instead of reconstruction is a valid option.

Looks like I’ll get to read similar stories—the ones I asked for that kicked off this whole mess—after all.

If You Don’t Approve of Preventative Mastectomy Don’t Get One

When I recently came across yet another criticism of “unnecessary preventative mastectomy” I reacted angrily. It was on HuffPo, and the article wasn’t even about the preventative mastectomy or the decision to get one so much as the author describing her husband’s reaction, but of course a commenter started in about “unnecessary mastectomy”, thinking all these BRCA folks with their 90% chance of getting cancer just need a little vitamin D. Puhleeze, so tired of this nonsense—does it not occur to anyone that maybe the author did research, already knows and considered whatever tiny-ass piece of advice someone clearly without experience and knowledge—like that particular commenter—could offer? OK, tiny subsidiary rant over.

I am so tired of people judging others’ medical choices. If you don’t like preventative mastectomy, don’t get one. No one, not even other breast cancer patients, let alone anyone else, has any idea of the millions of little details of another’s situation, medical and otherwise, and therefore are never in a position to criticize the choices of others.

But then I think: by sharing her decision (this blogger had previously written about why she’d had the procedure) and writing about it—and by extension, when any of us who put our stories on the internet—are we inviting this judgment? I’m not suggesting anyone stop sharing, not by a long shot. While I’d like to shout at folks like the commenter, “how are any of our choices impacting you—it’s none of your business,” did we make it public business, by, ya know, sharing our business? She put her story out there and she should not expect only bravos and applause, nor should I, nor should anyone. People judge each other all the time, but do we have a reasonable expectation to have them shut their mouths, not share those judgments, when we publicize our choices?

I’m actually not asking a rhetorical question here.

As I consider this most recent fuss that has come into my line of vision, I revisit what makes me write my story and show my pictures. I put my story and my pic here and the complimentary comments are great—I do feel good when I get that support. And it hurt to be told one time in comments on HuffPo that ugly pictures of breast surgery scars should not be posted on the internet (this was during the Facebook kerfuffle).

I certainly am not providing advice about medical choices by sharing my information (see my About page), nor do I assume anyone else’s information or choices will work for me. The more I haunt the internet, the more I think every single case of breast cancer is totally unlike the next. But I like hearing about other options, about other experiences, and other opinions—it helps me think and process my own experience, my questions. For example, I know most breast cancer patients choose reconstruction. In fact, I’m starting to feel like a freak more and more for just going with a lumpectomy. It seems everyone I read on the blogs had at least a mastectomy, usually double. I wanted to show–hey there are other options and that’s ok—we all don’t have to do the same. So I present my choice, how I got there and what happened with it, as just another experience or example, and maybe someone can benefit from knowing about it.

If I inspire, great, if not, great. I’m sure the folks who complained to Facebook about the SCAR project would just accuse me and my posting of my nippleless breast of being some attention seeking exhibitionist. If people think that, I cannot help it. All I know is, it took a long time for me to find images that matched what happened to me (as I’ve mentioned a few times on my blog, I was clumsy at searching cancer issues on the web for a long while). So the more photos of breast surgery examples there are out there for people to find, and if they can help someone else who is just now going through it, then good. I remember how alone I felt, and I remember the relief I got from seeing images similar to mine, when I finally found them. That is why I do it, it is that simple.

I think back to the woman mentioned above who criticized the influx of breast surgery scar photos on the internet, and her comment to me in which she claimed that if she ever got breast cancer she would deal with it with a positive attitude and not post her pictures on the internet. Funny, I once thought I’d never post pictures of myself either. It is impossible to know what you will do in any situation until you are absolutely faced with it. The blogger inspiring this post was indeed BRCA positive. I got the test planning that if it was positive—not realizing how unlikely that would be—I would just get a double mastectomy and be done with it. It wasn’t, obviously, but even now, I don’t know for certain that if I’d gotten a positive result I would’ve gone through with it. I cannot possibly know that unless it actually happened that way. I literally do not know what I would do in any other situation other than the ones I actually faced. If I cannot even know what I’d do with one little situational change—how can anyone have the temerity to call it an unnecessary mastectomy if they’ve never even been close to such a choice? And even if they were close enough—then they should know how awful the choice is, and why not judging others’ decisions is so important.

Ultimately I think it does not matter if the HuffPo blogger, or me, or anyone, posts our story for anyone to read. If I’d just kept the info quiet, restricted to a few IRL people, I would expect none of those people to tell me if they thought I was right or wrong in my choice—I may have shared my business but it’s still not their call. What does it matter if 15 people, or 1500, or a million people know what I did, no one has the right to question my judgment on medical decisions that impact me alone.

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