After All This Time

After all this time, scanxiety is still a bitch. It will be 8 years since diagnosis in October for me, and I’m impatient with myself. I’m soooooo jaded about EVERYTHING in cancer world (and elsewhere) yet I can’t seem to be jaded about my own fear.

Some annual mammograms are worse than others. I was tense last year, but not very much. I kind of figured it would “all be OK” and it was. This year I’ve had some pain on my right side, around the breast and under the arm. That would be the other side—my cancer had been on my left. I’ve also had some nagging throat/gland pain, so my paranoia is quite high. So naturally, as you can imagine, I’ve been a massive asshole for the past month or so. Super irritable. Quiet. Too much in my own head, up my own ass. What little “acting upbeat” energy I mustered, I saved for my job, and I’m ashamed to say I didn’t manage that quite well either.

When I went for my mammogram a couple of days ago—the oncologist always schedules a diagnostic, not just a screening one—I brought up the pain, and was approved to get an ultrasound too. All is well (with that; my throat issue will be dealt with next week). Two things struck me so hard during that hour or so it took to do all of this. The first was an idea that maybe I’m good at manipulating this situation. There is a sort of—not privilege exactly—being a former cancer patient. I was believed, there was no question. I know how to phrase it in med-speak: “I’m experiencing pain in the lymph area, and the side of the breast,” I say, so calmly. And they are all over it. It just seems to be in great contrast to things I’ve read (at random, they just seem to pop up in feeds lately) about womens’ pain being dismissed, chalked up to mental/emotional stuff. And while I still carry around a grudge about my first ever mammogram totally missing my giant-ass tumor back in 2010, I no longer mention it in the threatening manner I used to use to let imaging techs know–hey, you fucked up with me before, don’t let it happen again. What a weird status, to be a former cancer patient in the imaging center.

Second thing that struck me was just how much I HATE all of this. I hate the mammogram, it freaking hurts, especially on my left—the impacted side, the nippleless one. I always think I’m going to faint, but luckily I manage to get through. I hate sitting there in the ultrasound room, I hate the gel. I hate going into any medical facility, if I get right down to it. I hate being older so that the likelihood of potential diseases increase each year—any disease—whatever that will force me to take meds, see doctors. Yeah yeah, aging is a privilege denied to many, too many that I’ve known. So I’m not doing the “getting old isn’t for the faint of heart” thing—but, dammit!

When I was making my treatment decisions during that year, I remember a friend advising me to just “chop ‘em off”. So insensitive and I’m still sore about that. But on the other hand, before my diagnosis, I probably held the same view. It was only when faced with the reality that I recoiled from that caviler notion, and decided to take the lumpectomy the oncologist and surgeon recommended—because my chemo had done “so well”! Not sure why I didn’t want to lose my breasts, they aren’t great or anything, and I’m NOT a beauty queen, it was kind of out of character for me, really. Afterward, I was a bit smug, as I read all the articles during my early blogging days saying women were over-treating, jumping the gun in bi-lateral mastectomy, which does NOT increase survivability, does NOT decrease recurrence (cancer very rarely jumps from one breast to the other). I was prideful of a rational decision. But really I was just afraid; of what I don’t know. There are days I regret it. I know full well this is stupid, removal would prevent very little, but when scanxiety kicks in, rationality flies out the window. And I would just redirect my paranoia to other body parts—I’m doing it right now!

(NOTE: I’m not a medical professional, don’t let my confession of regret inform your decision—hell, don’t take ANYTHING I say or do as a factor into a decision—I am the worst, trust me, I’ve lived with myself for 46 years, I repeat, I’m the worst.)

I think I started this blog in 2012, so it is nearly 6 years I’ve been at this. I bet I can find complaint posts from as far back as 2013-14 regarding my frustration with the bi-annual “mammograms are not that great” debate, the cyclical debates about war metaphors, just everything. Feels like I’ve heard every angle to every argument about a million times. As I’ve said on this blog repeatedly, I’m short on patience. I cycle through things quickly. I get jaded fast before others (new patients I guess) even discover some of this stuff. So now I’m a bit jaded and impatient with myself. So often in the past year I’ve written posts here and on Facebook that cancer culture and the pink shit has GOT to move forward, the stagnation is choking me! Now I’m gagging at my own stagnant self, because I am still reduced to jelly knees when the annual trek to the imaging center arrives.

Longtime readers know, I’ve been absent here because I’ve switched focus to politics in the past 18+ months. But I’ve even been lame with that. Every day is a new low, a new outrage, and I am very burned out. This is not good for someone who has no patience (like, uh, me!). So I’ve been careful on Twitter, on all 3 of my accounts—nothing worse than an angry tweet, screenshots are forever! And Facebook’s algorithm is so stupid I just keep seeing the same stuff over and over; I do little 1 minute scrolls on my phone, but I barely register what I see.

I guess you could say I’ve disengaged a little bit. I needed a distraction for April and May so I concentrated on the end of the TV series “The Americans”, interacted with other fans—it was nice. I needed that escape.

Of course, I cannot stay disengaged for long, real life intrudes. I was stuck in traffic the other day (summer at the beach, y’all) behind this car with a multi-colored ribbon sticker that said “support cancer awareness”. It took all I had to not leap out of the car and shake the other driver: “what the hell does that even mean?!” I was so overcome with hatred for the word “awareness”, for the fact it has lost its meaning. And just a few minutes ago I was trying to listen to the 50 freakin’ podcasts I’ve downloaded on my phone and an interview with Amy Robach popped up. It was only a 15 minute thing (or so—I listen at 1.5 speed or I’d never catch up). But she managed to say every damn cliché known to breast cancer narratives (yes narrative is a damn cliché too). I only agreed with her on one thing: that it can kind of suck that docs tell us our treatment is “our choice”. I mean, I appreciate not having some god-complex-afflicted doctor command me from on high like in the old days, but on the other hand, I am paying for their expertise, because I sure as shit don’t have it. Everything else she said was just a mess. She started right off with the whole cancer makes you a better person myth that is oh so damaging. I would’ve turned it off, but I was washing dishes, and I just didn’t want to take the time to stop, dry my hands, then go back to it. I guess I should reign in my harshness. New patients might find solace in her “story”, others still, who are more like myself—and probably like you if you’re reading this—have to come to their realization in their own time. I can’t just stand up and be like, “hey can we all collectively, as cancer patients, no matter what year of our journey we’re at, just stop with this tired old script?” I want to do that, but then, I’m a bit crazed of late.

quotes-Where-is-my-mind-

Well, I went off the rails a bit didn’t I? This has been a periodic, classic Cancer Curmudgeon word vomit, stream-of-consciousness ramble. It is the written, electronic, blog post equivalent of me poking my head out of the little cocoon I’ve developed, looking around and going “what the fuck?” and diving back down.

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Just Got Fooled Again

Well hoo-ray for The Who, always singing how they won’t get fooled again—but I did. After all this time I’ve spent in CancerLand, and all this time I’ve spent being a Curmudgeon and skeptic (that would be my whole life), one would think this ol’ Cancer Curmudgeon would not get suckered into a Breast Cancer Awareness marketing trap. But I did! I guess my defenses are not October-ready yet. (Although this heat and beach traffic has made me more than ready for Labor Day, actually. But I digress.)

Weight Watchers is partnering with American Cancer Society for a Pinktober event/stunt/thing, and it is everything that is wrong with the notion of corporate giving. I stumbled upon it via a Facebook post, and no, it was not an ad or even a sponsored post. I was hooked in by the opening question, did I experience weight gain after breast cancer. Well, YES! I’ve spoken about that before. The post went on to talk about Weight Watchers and American Cancer Society partnering on something called Project L.I.F.T. So I clicked to the article.

Now, I have to pause here to explain my state of mind as I clicked. First, I had an expectation, likely an unreasonable one. I know that expectations are the source of disappointment and suffering, yet I still have them, crazy me. Second, I confess (again, see linked post) that I know very little about any weight loss programs out there, especially the ones where one has to sign up and pay a fee, including Weight Watchers—so I was totally blind about what exactly their service is and how much it costs. As mentioned before, I was very thin growing up and could eat whatever I wanted. It has been in my cancer-induced, post-menopausal life that I’ve had to really think about what I consume. These days I really understand the jokes and memes about just looking at a piece of cheesecake and gaining weight from that act. In short, so much of this is all new to me.

So I read the article and clicked onto the website(s) to see if I could get maybe a free month’s worth of whatever services WW offers. Nope. This annoyed me. Now, some of you might be saying, the weekly fees of WW are not that much, surely if I were serious about my health I’d choose to spend my slim spare income (very slim) on WW, than say, a Netflix plan. True, but I’d counter with—how I spend my money is no one’s business, and also, if the WW fees are indeed so reasonable, would it kill them to offer a free month to breast cancer patients to get them to try it? My guess is that one month is not enough to see meaningful results, one has to stick with the program for much longer, like 6 months or a year. A year of those “small” weekly fees adds up, BTW.

At any rate, my expectation was probably out of whack.

As I continued to peruse both the article and the website, I began to realize that the “free resources” WW offers to inspire and guide breast cancer patients are really just more of the same old rah-rahing thing.

From what I could tell from the Yahoo press release, the “offers” were repetitive. The article mentioned at least twice the content for breast cancer “survivors” to help us understand why we gained and how losing will help us prevent more cancer. OK, so why does that piss me off? Because the losing=prevention of recurrence is too close to the blame game and is out there enough. I don’t need “special content” to tell me about it. Also, I’m not sure the “why” of the weight gain really matters—at least to me. I suspect some of the reasons will not apply to me, since I was E/P negative. And even if I’m wrong, so what? A mental health professional once told me she was not interested in that clichéd psychotherapy thing of going back to one’s childhood to unlock the why behind people’s current mental health issues. Why bother? She used a tennis analogy. So what if a rising tennis star has some bad serve habit instilled by her old coach for whatever reason? The point is to eradicate the bad habit—no matter how it got instilled—in order to improve her game to win. Same with mental health. I know why I have some bad mental habits, but since I cannot change the past, they do not matter. To move forward, I need to learn how to change some ruts my mind goes into. Same with my weight. I actually suspect I know why I gained some weight post-cancer treatment: I was so glad food tasted GOOD again. During that first round of the Red Devil, all I ate was mushy peas from an imitation English pub in my American beach resort area (I know, it is weird, but they were kind of the only thing I didn’t hate). Needless to say, my weight plummeted while in chemo. Now that I can have rare steaks, sushi, and whatever again—and I don’t hate the taste—I tend to just eat! It is certainly tied to my fear of recurrence. And yes, a bit tied to my thoughts of—well, I didn’t have to watch my weight before, but I did tend to make healthier choices—but forcing myself to eat yogurt and whatnot did not “save” me, so what the hell?! Bring on the chocolate cheesecake!

OK, I’ll stop, I’ve written that post before.

Another aspect that bothered me about the WW partnership was all the “celebrating” of survivors. Again, this was repeated twice, to make it seem like more stuff is being offered. Selected women will be featured in their October magazine. OK, so how does that help me lose weight? I know, I know, I should be happy that all breast cancer survivors are being honored because some “good” patient representative is in a magazine. But I’m not. Other patients do not represent me. And after all this time, this blog gives a smorgasbord of examples of how I am so NOT a “good” example patient. I’ll never be a representative, and I rub my hands together gleefully at my badness.

Finally, we have the shopping and showing aspect, which has always bothered me in ALL cancer/disease-of-the-month/issue-of-the-moment walks/runs/whatever awareness-raising event.  The press release talks about the exclusive products for sale. So instead of something free—which is what I wanted, free assistance in losing weight—no, I have an opportunity to SPEND. Uh, no.

And it isn’t just an exclusive product to have—no, the product is to wear, especially during the on the ground presence WW will have at the walks taking place in October. Go back and read my post from last year, Supporting The Show? This is not just about doing something good, this is about WW being SEEN doing something good, and getting their minions, whoops, I mean customers, to be seen as proof of goodness. Breast cancer patients need to lose weight—yes, I concede that point—so they become the precious commodity/resource (to corporations) of all: COSTUMERS. I actually counted the links in the Yahoo press release posted breastcancer.org, because I guess I’m just that petty. One for WW itself, one for WW’s Project L.I.F.T. itself (which is what this whole party is about, right?), two for Making Strides Walk (the WW page), and four for the WW shop. Guess I know what is most important here.

Now, it may seem like I’m picking on WW in this post. Maybe I am, but I see this as a microcosm of all the corporate philanthropic efforts toward breast cancer. Always the one/two punch: one-breast cancer patients and their loved ones (and potential future patients) are customers eager to shop in hopes to somehow buy karma so they don’t get breast cancer, and two-everyone, the corporations and the customers get to show off how much they care about this issue. Because doing something good doesn’t count unless everyone and their brother knows about it (yes, sarcasm).

Perhaps this post is a result of me being mad at myself mostly. I’ve seen this stuff a million times in my life—background noise before I got cancer, and infuriating examples I examined as I entered the cancer social media world. I’m angry because my worries about my weight made me a bit vulnerable to one of these campaigns that I’ve seen and scrolled by with an eye roll oh so many times. I got suckered. I got fooled, when I really do know better.

Won’t get fooled again.

SELL!

I am re-posting what I wrote a year and a day ago. Why? Because the issues are boiling up again. (The relentless repetition in CancerLand Culture deserves a post of its own some day, I’m beginning to view relentless repetition as a weapon.) In my view, and I think others share this view, medical establishments are misleading the public with their ads focusing on patients fighting cancer, and winning. Rather than leading a change in the discourse, a change focusing on science and facts, some large “name”, as well as some small-town no-name, facilities have chosen to perpetuate the dominant, persistent, same story-different day narrative of cancer as this opportunity for personal growth, so patients can rise to the challenge and beat cancer–along with a little help from staggeringly expensive treatments provided by the facility in question, naturally.

Some would say it’s just as bad when a fundraising organization does this, since they are often a resource for medical facts for the newly diagnosed. I don’t completely agree, but I still think the images they sell with the narrative are repugnant. But it certainly is not new, it keeps popping up, as I say in this old post. Lots of folks were upset with the Stage 4 martial arts patient in the Komen ad last year; I just thought it was BUSINESS as usual.

I don’t know what the answer is-yes there needs to be funding for research and so far the selling of positive, upbeat, winner patients (and boobies–don’t forget ta-tas and immaturity as a selling tool) has worked. To me there is no use in denying this, in fact, it needs to be recognized and discussed. I am simultaneously repulsed and grateful (see Burden of Gratitude). Cancer patients are commodities. Some others in the community likely think: “So what? As long as the money pours in to do research so maybe I can survive, who cares?” And maybe they have a point. But it comes at a cost (again, see Burden of Gratitude).

No I don’t have a better idea–that is not my field of expertise, so it is not very fair to expect a solution from me. I’m just complaining as usual. Wondering what you all think of all this. All I know is, there is something very unsettling, very creepy about it all. And certainly a whiff of dishonestly, of deception.

Anyway, am I a Cancer Patient or Blender? What are you?

Heartstrings

My cancer “story” is not cute, nor triumphant (arguably, I mean, I AM alive still), and it does not tug any heartstrings. I put story in scare quotes because lately I’ve been so very tired of every single cliché in cancer—even clichés I use, like “tell your story”. I don’t really object to the phrase, I just hear it too much. Anyway, enough of that ramble.

I’m responding to the Dog Day picture posted by Komen, of dogs wearing bras with balloons in them—you know, for “the cause”, for “awareness”. I and so many cancer bloggers I read objected vehemently to the photo. How can those of us objecting to the sexualization of breast cancer combat this?

Well, for years bloggers have been combating this by writing about the other side—the one that includes pictures of ugly scars, stories of failed treatment/surgery, stories of recurrence or metastasis, stories of the lovely side effects of treatment (hemorrhoids + diarrhea, anyone? no? just me?). But the mainstream media (I swear, I’m not Sarah Palin the way I go on about the mainstream media, there is just no other way to phrase it) prefers the pretty boas on women who kicked cancer’s ass. That does not represent me.

But neither do some of the stories that tell the other side.

I “only” had a lumpectomy, luckily because my 5×6 cm tumor was shrunk by chemo (I’ve had an ugly post about breast cancer competition stories in the works for ages, and one day I’ll calm down enough to finish and post). So I have no traumatic surgery photos to post. In fact, the photos on this blog show a masterfully completed surgery with a neat and tidy scar, covered with a tattoo I got in “triumph”. I have no photos of my hairless self, pics of me in chemo. I didn’t want to document or remember any of that. I was photographed when my hair first started coming back for a work event; I felt I could not object to the photo being taken since it was publicity for the event. These days I wish I’d refused, that the photo did not exist.

I mean, I do have my original images of my first mammogram, that show a big white blob in the left breast, with no matching white blob in the right. It could be a cautionary image-story of how a tumor fools a radiologist into believing a woman just has dense breasts. But it isn’t impressive, eye-catching stuff.

I did not have as hard a time with side effects as other patients I’ve met in real life and online. I won’t say I “breezed through” treatment. Indeed, the fight with the nurse practitioner over whether I had shingles or Staph was a pain in the ass. Especially being put on meds I did not need and did not solve the problem, and the tenacity I had to use after chemo and surgery to get a correct diagnosis. But that is a minor speed bump compared to horrible stories I read.

Lots of metastatic stories I read bring up the fear of dying before seeing children grow up, go to college, get married, have grandchildren. I don’t have kids and never wanted them. So my story is not poignant, would not work in one of those ads designed to make people reach for tissues and credit cards. My story has no such tragic element.

Furthermore, I’ve made no grand contribution to society. Other than my parents and a few random relatives and friends, I’ve made no mark on the world. I’m just a smartass more interested in pets than people. My personality and my story will not send the masses to wipe tears and open checkbooks. My story and (lack of) pictures cannot combat and get attention for breast cancer awareness the way images of women doffing bras for the cause, funny dogs in bras, women pulling a warrior pose, and mothers afraid of not seeing their children grow up, can to get the public eye.

Of course, I am doing the thing I hate most: comparing cancers, getting into the cancer Olympics, who has it worse bullshit. I don’t have it bad—I participate in discounting, I “only” had stage 3, I “just” had a few side effects. Again, that comparison, who-has-it-worse, crap is a story for not just one, but two, future painful posts.

So why participate in all the “tell your cancer story” activity? I’ve admitted a few times here on this blog and other social media that at this point, this blog is mostly for self-therapy. And to lend a digital hand to others who have had or currently have cancer, who have similar crotchety views like mine—to let them know they are not alone—the way I felt in that post-treatment depression period. I’ve given up trying to convince those without cancer and those that embrace Pink-rah-rah-fight-like-a-girl stuff around to my way of thinking.

But then I think, perhaps the blandness, the ordinary-ness, of my story is in fact what is so horrific about it. Sure I had some family history—certainly not as much history as others I know of. I was just going along in my life, figuring cancer was a likely eventuality for me, although I expected blood pressure/cholesterol/heart disease issues first—that was the more common family history. Cancer would be my post-retirement issue.

I wonder what the non-cancer general public thinks when they see the trying-to-make-you-cry cancer ads. Do they hug their children, pause in momentary gratitude, and then move on, figuring “it won’t happen to me“? I mean, I sure thought that way. Even now, 5 years later, I’m still vaguely surprised I had cancer—that it happened to me. Shocking getting-cancer-young stories always happened to somebody else.

If I knew of a way to post a picture or to distill my cancer experience into a pithy quip or soundbite that would gather attention, that would combat the clichéd ads and pictures already creeping in before October, I would do it. But, I don’t believe in creating some pink boxing glove inspirational image, I have no tragic pictures or stories. All I have is an ordinary tale: I got cancer when I did not expect it; I elected to get treated; and now, so far so good. No heartstrings can be tugged—and I’m not the type that likes that kind of thing anyway.

Of course, it isn’t really that simple.

Cancer continues to have a profound impact on my life. Some of it is still physical; the tiredness unnatural for one in her 40s, the remnants of brain fog, the pain and tenderness to the point of abhorring touch on the breast that had cancer—and of course that dip where the nipple used to be. Much of the remaining impact is mental and emotional, and altered views—I won’t say cancer lessons. They are lessons, just not socially acceptable lessons—again, blog posts for future days.

I’m just so tired of cancer culture, especially breast cancer culture. And I’ve only loathed it for 5 years; I know there are other bloggers out there who’ve been criticizing this mess far longer—and so much of the culture remains unchanged.

At this point, my cancer experience is not one of inspiration, not one to tug any heartstrings—it just a story of weariness. It is not good copy for ads that get attention and money.

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!

I’m In Love With That Song

“I’m in love with that song.” –from “Alex Chilton”, The Replacements, lyrics by Paul Westerberg

I have been feeling utterly defeated by all the Pink this October, despite my earlier claim to Take October Back.  But a very welcome distraction arrived for me last week in the form of the 16 nominees for induction into 2014’s Rock and Roll Hall of Fame.

I pause here to acknowledge the absolute lameness of a former punk-alterna-girl being so invested in the Rock and Roll Hall of Fame. Rock in general is about rebellion, and the Hall of Fame is an institution, the sort of which rock should rebel against. And even if rock became “respectable” somewhere along the way, then things like early and classic rock belong in there, but the punks that came along later to rebel against the established stuff, and then the post-punks after that, I mean, wouldn’t they rebel against that former rebellion-turned-new institution/establishment? See the Sex Pistols’ infamous rejection of their induction in 2006.  Even worse, I have to pause and acknowledge that in the past few years I’ve seen a few of the bands that provided the soundtrack of my teen years creep in, which just really means, I’m getting old.

Yeah, yeah, this is a cancer blog, and that will come into play much later in this post. This blog is an indulgence for me; my view on cancer, my personal experience with it, and how I (don’t) function in an American social culture that surrounds cancer, which I find mostly distasteful. So I’m indulgently rambling about music, because it was the one respite I had once I found myself a bit lost upon exiting the treatment treadmill (“you’re all better now, see you in 6 months!”, ha ha). Proof of my allegiance to my method of beating cancer blues is everywhere; in the post Punk Rock (Breast) Cancer, my tattoo (Red Hot Chili Peppers, Hall of Fame inductees in 2012), hell even my gravatar (The Ramones, Hall of Fame inductees in 2002).

I skip over the crap like “rap doesn’t belong” (yes it does, and I’d argue that until I’m blue in the face, and even if I lost the argument, I’d still argue it), “Yes/KISS should’ve been in there loooooong ago”, or “the world is doomed because more people like Nirvana than Link Wray”. Yada, yada, yada. I love watching the arguments unfold on various websites, and agree and disagree with so much of it. “We all come from the damn blues,” said Chuck D. (Public Enemy) in his acceptance speech last year. That should be made into a sign and posted above the door to the museum in Cleveland, or maybe noted in every article about this comparatively (to cancer, for me) silly topic, to remind everyone with an opinion how the whole mess called rock and roll got started.

My humble opinion is any person or band that is inducted, or heck even nominated, including the 16 this year, deserves to be there. I do have my favorites however, and this year I’m voting every day for Nirvana, The Replacements, N.W.A., LL Cool J, and the fifth option is a wild card for me every time. I could write forever extolling the qualities of my choices, but it is the first two I’ve listed that matter most to me now.

As a lonely punk-goth girl (weirdo) growing up in the 80s (remember in the 80s, there was no interwebs, so radio and magazines were the only exposure to music available) I hated what was on the radio; I lived in a rural area where there were no alternative stations—D.C.’s WHFS was an hour out of range. I loved the left of the dial stuff like The Cure (nominated once), The Pixies (never nominated, an outrage) and R.E.M. (inducted in 2007 and yeah, gonna be a snob and reveal I was fan well before they got played on regular radio, and got all famous). I used to stay up for those one or two hour programs of “college rock” on the radio or “120 Minutes” on MTV just so I could hear stuff to my liking. It was on one of these programs I first heard Nirvana’s  “Smells Like Teen Spirit”.

People always like to talk about where they were when they heard the bad news of some horrible event, and lots of cancer patients remember all too well, and have written about, where, how, and when they first heard of their diagnosis. My own memory of that, still so sharp, I’d like to erase. But I always want to remember the feelings and thoughts when I heard first heard “Smells Like Teen Spirit”. I was beginning my junior year of college, tired from working my ass off all summer to pay for the privilege of extended education, but still unsure about my future (well, that turned out unexpected, what with all the cancer). I heard that song and knew it would change everything.

Reams have been written about the influence of Nirvana in rock music. To me it was much simpler: the weirdos won. Finally, I could hear music I liked on the radio—which was great because my car’s tape player was forever breaking. With the nomination and almost assured induction of Nirvana, the weirdos win again. And I cannot let this year or this post pass without expressing shock and joy at the nomination of The Replacements. Of all the precursor bands to the so-called alternative music revolution that happened after Nirvana got famous, those bands that faded back into obscurity after it was so quickly over, I thought that only Sonic Youth would get any eventual recognition, and I still find their lack of nomination scandalous. So I view this nomination of The Replacements as nothing short of triumph, even though I am sure lots of people heard their name last week and said, “who the hell is that?”

But here is the funny thing. I know it matters a great deal to me, but not much to most people.  All summer, I’ve worn my Nirvana t-shirt with the smiley face logo (see banner) on the front and the less offensive claim on the back that the band is “flower sniffin’, kitty pettin’, baby kissin’, corporate rock whores” (the other version is worse, look it up).  People I interact with saw my t-shirt front and asked about Buddhism!  Here’s this band that is still a great favorite of mine, that had this tremendous influence on my young 20 year old self, and on the music industry, and no one seems to know who they are/were anymore. Because I immerse myself in entertainment media, I’ve been barraged with details of the 22nd anniversary of the release of their album “Nevermind”, the 20th anniversary re-release of “In Utero”. I get a skewed view of the world, I think they mattered greatly.  And yet, I constantly interact with people who do not even remember them.

It mirrors how I experience cancer at times. As a breast cancer patient with a tiny blog, who tends to seek out info that reaffirms a notion that Pink is WRONG, I sometimes get the sense that Pink, ribbons, and cancer are bigger issues than they are to most people. I have to remind myself that most people are not as tuned in to the issues, the lies of Pink and that is why they ignorantly continue to buy into it. I have to calm myself down—most people do not deal with breast cancer every day and do not know or understand that some breast cancer patients hate Pink. I wanna scream, “why don’t they get it, there are a million articles about how pinkwashing is damaging.” Well, because not many seek out that info.

Sure, lots of people are “touched” by cancer via friends and relatives, but it is only a small (hopefully growing) segment of breast cancer patients that have done the homework behind what is really happening behind the Pink-party-charity explosion. Just like most people are aware of a Rock and Roll Hall of Fame, but maybe, to paraphrase Nirvana’s “In Bloom”, likes the pretty songs, likes to sing along, but don’t know what it means.

To avoid being strangled by pink ribbons and all the surrounding bullshit, I’ve reveled in the news of the nominations. For the past several days I don’t think I’ve played a song on my phone that was not a Replacements song—yikes, better mix it up with songs by the other nominees! I’ll listen to “In Utero” for the millionth time, I’ll vote (maybe pointlessly) for my favorites on the Rock Hall website for the next several weeks; it is a great diversion. And when Nirvana’s living members accept their induction next April, I’ll try to remember that every once in a while, the outsider voice becomes the mainstream, and I’ll hope that the small segment pointing out all that is wrong with Pink can capture the attention of the world, without smashing any guitars.

“To truly love some silly piece of music, or some band, so much that it hurts” from  “Almost Famous”, film by Cameron Crowe, 2000

Does Breast Cancer Owe It to Other Cancers?

A/N This is a potentially offensive post, please follow my train of thought to the end, I am trying NOT to be a jackass, and failing. This is just how I am seeing this issue at the moment. I beg you to change my mind in the comments.

Here is yet another criticism of that 2020 deadline, Can Setting a Deadline Put an End to Breast Cancer?  by Geoffrey Kabat. I’ve already blogged about this issue, when that editorial in “Nature” appeared few months ago.

Honestly, I have a few problems with the 2020 Deadline myself, even more now than when I originally wrote about it. My biggest problem is one of the main issues confronted by these editorials: that discovery cannot be forced; it will not answer to a deadline. I agree with this, and even the idea that setting a goal that has a real chance of NOT being met is a bit risky.

But what irks me is in both of these pieces, there is this suggestion, no, AN EXPECTATION that breast cancer activists, advocates, organizations should focus on other cancer problems, not just breast cancer. These activists/organizations have done such a good job of creating awareness (really?), the energy should be applied to other cancers, so the thinking, I assume, must go.

Is it really the best solution for National Breast Cancer Coalition, or any other organization DEDICATED to breast cancer, to handle other cancer problems? I mean, National BREAST CANCER Coalition, see? BREAST CANCER right there in the name. There probably are already some organizations taking on other cancers in baby steps now; goodness knows the damn ribbons for all other diseases exist (stop reducing diseases to ribbons!), and I suspect these groups have adopted some tactics of breast cancer awareness. If so, let us hope these groups learn from pink marketing’s mistakes before they go too far. The deadline has a focus of ending breast cancer, misguided or not, but that is because the whole point of the organization is…wait for it…BREAST CANCER. That is why it formed. Its objective, according to an old address by its president Frances Visco, is to end breast cancer and cease to exist because it would no longer be needed. Why would anyone think it should do other work—to self-perpetuate?

It’s just that the logic demanding breast cancer organizations (which were formed for WHAT disease, again? yes I’m being sarcastic) work on other cancers is flat out faulty. Go with my flow here for a second. This author points out lung cancer kills more women, and says a breast cancer organization should do something about it. This implies breast cancer is just a women’s problem, breast cancer organizations are just women’s organizations. Well, no, men get it too, and a breast cancer organization is about all breast cancer no matter what the sex of the body it’s in; and the breast cancer organization is not focusing on all health issues suffered by women (because it was formed to focus on what disease again? Say it all together now: BREAST CANCER). Yes the opposite is true; breast cancer can be under the umbrella of women’s health. So when he says “The exclusive focus on breast cancer skews one’s perspective by blotting out other opportunities,” does he really mean we should get rid of some breast cancer organizations, and pay less attention to breast cancer because other diseases kill more women, and are therefore more important? Because that is kind of what it sounds like, and that would be incredibly stupid.

Also, I am a little confused and bewildered at the author’s suggestions that breast cancer organizations work specifically on lung and cervical cancers. According to the information in his editorial, the causes of these two are known and preventions available. The reason the 2020 project is in place is to find the cause(s) and some preventions for breast cancer. That would mean, work on breast cancer is far behind the work on these other two cancers. So, is he suggesting breast cancer organizations work on these projects because, what, it’s easier? And what, just say to future breast cancer patients, sorry you’re SOL, it was easier to sell what we already had or knew, because we did not want to invest in even trying to make a discovery?

Perhaps the bug up everyone’s ass is jealousy because of all the attention breast cancer has amassed over the past few decades. I KNOW lung cancer AND heart disease kills more women. Not this article, but plenty of other articles about heart disease always seem to start off with a sentence about how heart disease kills more women than breast cancer, as if the authors are personally offended that breast cancer gets more attention than their cause (read this fabulous rant by a blogger on Tumblr). I know everyone has their own agenda, their own pet cause because it is something that impacts them, and each individual is entitled to their viewpoint and their cause. But picking on breast cancer is just getting tiresome.

Breast cancer organizations are most likely run/staffed/founded by those with personal knowledge of it, which is why they work on it (duh, it is what they know best), rather than, say, heart disease. I blog about breast cancer because I had it. When I get heart disease, I’ll blog about that too. It is the nature of the beast. Should diseases that kill more people get more attention? Maybe, but how does that make those diseases more important, more devastating, than a rare disease to someone who has had loved ones die from said rare disease? Who the hell goes around saying “my disease is more important than your disease because it kills more people”? Breast cancer patients, imagine saying to your ovarian cancer friends “breast cancer is more important because more women have it?” How much of an asshole would you have to be to say that? But it seems OK to imply these other diseases are more important than breast cancer for the same reason. Breast cancer may be viewed as a big ol’ pink bully in disease world, but it is starting to be the one bullied. Apparently payback is a bitch.

color pink

The blessing and the curse of pink marketing is that it made breast cancer seem like the most important and desirable cause in the world; getting a lot of money and research which resulted in treatments that saved lives, including my own, for which I am grateful. But the fact is, pink dollars didn’t stop breast cancer from happening to women, it didn’t even really slow it down, just stopped some of the dying. But not all of the dying. Breast cancer patients still get mets and die, no matter how much pink marketing pretends this doesn’t happen (remember, cancer patients don’t die, they lose their battle). In short, pink has not been a blinding success. So when advocates for other health causes complain about how much attention breast cancer gets, I suggest taking a long hard look at that, and understand there is a dirty underside to pink that needs exposure. And there are plenty of bloggers exposing it, it wouldn’t be hard to learn the truth.

Back to the question at hand, do breast cancer organizations owe it to other disease problems? I’m certainly not suggesting here that breast cancer groups should just turn up their noses and say “not my problem” about other cancers. There are more breast cancer survivors because incidence has not decreased like the death rate. I may feel a personal obligation to advocating, yelling, on behalf of those causes, but I don’t think an organization devoted to a certain focus should split that focus; that is unfair to the people the organization set out to serve. It is difficult to say which is the more compassionate choice here, if there is one. And yes I do realize that new organizations for unrepresented causes/diseases cannot just be created with the snap of fingers. I don’t have the answer; I’m only asking the question. It will take many minds to come up with the solution.

Ramblings On That Word Awareness

Seeing the success of Breast Cancer Awareness Month, so many other diseases are using the word “awareness” to bring attention to “their cause disease”. But the word is overused and has lost meaning.  My knee-jerk, smart ass response these days is, ”I can’t get any more aware, thank you”. In articles and online discussions I often see the comment when the NFL is wearing pink, or when you can buy pink kitchen appliances, or when you see (name random thing) pink, we’ve reached our awareness saturation point (in terms of breast cancer). I’m inclined to agree, especially since when the comment comes from someone with whom agree on the point of being sick of all things pink.

But maybe this view is wrong. Awareness may be at saturation point in the target audience for breast cancer cause marketing, which is middle class white women with the money to spend on any product with a little pink slathered on is. Are poor and non-white women being reached? I know that special education and outreach programs exist to remedy this, but I cannot see results beneath all the pink (and white). Unless the target audience can see themselves getting cancer, they will never really be “aware”. Where is the pinkification of products preferred by African-American women, by Latina women, or affordable to the poor?

Which leads to another, larger point—I was “aware” of the pinkness and assorted hoopla each October prior to my own diagnoses, but as someone under 40, I didn’t really see myself as the target…I did not see myself getting cancer. I was aware I could get it, aware of my risk factors, etc. I’m sure some would point out to me that awareness led me to get a mammogram that caught my cancer and saved my life, except in my case, that is not true (see my about page).

So I’m aware, you’re aware, she’s aware, he’s aware. Big whoop. What is being done about it? I modestly propose a change of focus and title for all these disease campaigns. Cancer is too complex for a cure, I get it, I read The Emperor of All Maladies. How about something like stop X cancer from killing people? Or better yet, dare I ask…Prevent ALL Cancer?