Category: Uncategorized

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?

Not Full Circle Yet

Maybe there is a backlash to the backlash in cancer culture. I’ve mentioned it a few times in assorted posts on this blog, how those of us criticizing all things Pink and rah rah are finally being “heard”, at least in CancerLand, and I think there is a push back or defensiveness resulting from this. (See here)

I am not a breast cancer historian; if I were not so busy/lazy, I’d re-read the sections in Gayle Sulik’s “Pink Ribbon Blues” chronicling the rise of the Ribbon and the adoption of warrior, I’m-a-survivor-kicking-cancer-ass slogans, to understand when they began to permeate our culture. Was it the early 90s, maybe? I have no idea when the criticism of this culture began—I only became aware of it when I moved to CancerLand. One of the first things I managed to read was Barbara Ehrenreich’s “Welcome to Cancerland” essay as it appeared in “Harper’s Magazine”. Re-reading it today as I write this, I’m reminded the roots of the women’s health/breast cancer awareness campaigns had a gritty, less pretty start. There were demands about the environment, demands to be included in medical decision-making. Somehow and somewhere along the way it go co-opted. Yes, by Komen primarily, but other groups, and more importantly, millions of patients, went along with it. And then our society became all about fight/win/be positive when it came to illnesses and many other issues.

So when did the backlash begin? Well, Ehrenreich’s essay appeared in the November 2001 issue, so at least as early as 2001 breast cancer patients were uneasy with the “tyranny of positivity”. I’m sure there are earlier examples—but the fact that I don’t know about them, that I only learned about others expressing how I felt when I went looking for them, is kind of my point! The pink/rah rah/think positive to beat cancer was, during my time in treatment, and is still today, THE dominant cancer experience narrative. Continue reading “Not Full Circle Yet”

Cells Don’t Have Brains

Reblogging my own piece from a few months ago. Why? Here ya go:
I am getting very tired of the over-dramatization of cancer, of giving cancer human or monster attributes it cannot possibly possess. That is why I do NOT write “letters to my cancer”.
Those ACS ads that came out at the end of 2015 were awful; I tried to avoid them. Didn’t know about the one in which “cancer fears love” until my friend Luna wrote about it. On the whole this ad campaign is terrible, but this one really plucks my nerves for this “make cancer a person/monster” angle.
Look, some people clearly need to anthropomorphize cancer to cope–but organizations that provide scientific info should NOT do this. I don’t write letters to cancer because cancer can’t read. But I assume someone at ‪#‎AmericanCancerSociety‬ can read. So Dear Person In Charge of this Campaign, STOP IT!

anotheronewiththecancer

Or: Why I’ll never write one of those “dear cancer” letters

Cancer is not a person, or even a sentient being, or even a separate life form. It is not an invader. Cells divide, that is what they do, except with cancer, it’s an anomaly of cell division. My cancer is just of my own cells running amok.

I see lots of “dear cancer” letters, especially in October, and they always make me uncomfortable. I know, I know, it’s just a way of coping with cancer. For me, it is sort of in the same category as going into “warrior mode” then “kicking cancer’s ass”.

Except I’m that jerk who points out that cancer has no ass to kick, not being a person or animal or whatever. This is one of the reasons I hate the “kick cancer’s ass” slogan—I won’t go into the bigger reason for that right now…

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Medical Obligations

I’ve been giving much thought to all the accumulated knowledge cancer patients get once we’ve lived in CancerLand a little while. Staying active in social media especially builds that knowledge as we interact with other patients in various stages of treatment. I’m not talking about strictly scientific, medical knowledge; I’m talking about cultural knowledge as well. Not only are patients filled with this knowledge, but so too are medical facilities and fundraising and support organizations.

Or are they? Continue reading “Medical Obligations”

Free Remedial Journalism Lesson Here!

OK, I HATE that I noticed this mere minutes after learning of Alan Rickman’s death. I even hated making a small note on Facebook about the language surrounding David Bowie’s death:

I didn’t want to gripe about language so soon after ‪#‎DavidBowie‘s death. But, damn, one UK headline I saw actually said Bowie “lost” his battle to cancer.

Now, it’s bad enough that the people behind the official Facebook announcement used regrettable language about his “courageous battle”, but at least they did not say lose. I cannot blame the media for using “courageous battle” when it was part of the official announcement. But putting “lose” in there–for fuck’s sake!

As I’ve said MANY times I just don’t even buy into this whole battle structure. But if I were to go with that flow for a moment, and concede that perhaps Bowie was framing the last months of his life with cancer as a battle…who in their right mind would say he lost? He released this album–kind of made it all like his art….seems to me he did his death on his own terms. Hardly a loss!

I mean, Bowie just seemed so alien, such an Artist with a capital “A”, that bringing up the old CancerLand semantics quibble seemed silly, petty, small.

But this morning I’m seeing that Rickman “suffered” from cancer, while Bowie “courageously battled” cancer. What the hell? Who is writing this? What idiot editor is approving this? Continue reading “Free Remedial Journalism Lesson Here!”

“I Know It When I See It”

US Supreme Court Justice Potter Stewart said this phrase in 1964 describing how to define obscenity. Yeah, I looked it up because I was trying to remember how/why the phrase was familiar. I seemed to remember it in relation to either the Robert Mapplethorpe exhibitions, or with the “Piss Christ” exhibition, or was it the Tipper Gore/PMRC/Moral Majority stuff back in the day? Which time did the phrase pop up, from my late high school and early college memories? All three? Probably!

It is interesting to note that Justice Stewart said this line in a ruling about a film (“The Lovers”), proclaiming it to NOT be obscene. Film, ratings, and obscene content pop up every now and then. I’m thinking most recently of the film “Blue Valentine”. Remember Ryan Gosling criticizing the MPAA over the initial NC-17 rating? He pointed out that when men receive oral sex in film, it is “acceptable”, but when it is a woman—well much gasping and pearl clutching ensued (my words, Gosling never said “pearl clutching” that I know of, but I’d love to hear him do so!). Go back about a decade and check out the documentary “This Film Is Not Yet Rated” for an illuminating look at the sex-obsessed, secretive, MPAA board. Filmmaker Kimberly Pierce (“Boys Don’t Cry”) makes the same point as Gosling in the first few minutes of the film. Filmmakers interviewed in the film gripe the most gruesome violence merely gets an “R” rating, but too much use of the word “fuck” and too much, or ahem, “certain”, read: gay, intimacy scenes gets you a “NC-17”. There are many gripes in addition to this—such as the accusation that the MPAA serves the big studios and punishes the small independently made films—but the pearl-clutching, community standards claim is what I’m interested here. It seems the standards—if there are any—are based on personal prejudice rather than what most of America thinks. The documentary explains all this much better than I; go check it out.

Continue reading ““I Know It When I See It””

What Gets Lost in Translation

This is another “cancer language sucks” post. And yes, it is about the celebrity stories and wacky headlines bombarding the entertainment news sections: Rita Wilson and her 100% healthy and cancer free—which it seems she actually did say; Former President Carter’s cancer free status, though I think that was said about him, not sure what he actually said; and the completely baffling story of Lorna Luft and her seven ribs. I admit, I gave up reading pieces about her, could not figure out the details and her clichéd quotes, her need to adhere to the culturally approved cancer script, just sickened me and I gave up.

I’ve written about my rejection of the terms like survivor and warrior (here and here, that’s two in my mind, too lazy to look for more), and no doubt will again. I’ve especially written about my confusion about remission. I cannot recall exactly what phrases any of my oncologists have ever said to me. While never grim, they were always cautious. I do not remember anyone using NED with me; I picked that up via social media. I’m sure no one ever said “cured” or “cancer free”. The vibe was always: “we don’t see any cancer, and your chances are good, but let’s keep an eye on it all”. I was told from the very first meeting with the oncologist the odds of my kind of cancer (HER2+) and stage coming back. I was always aware it could go other places, and was told how lucky I was the cancer had not reached the chest wall—tho’ it almost had reached it.

But the general population just cannot understand all of that. I’m learning some cancer patients don’t understand it fully either, and nor do they try. I am still in slight shock, all these years later, when I think of that little “live healthy post cancer” workshop I attended—in a room with about 10 other women, none of them understanding what I meant when I announced my stage and type at the meet and greet part. “HER2? What does that mean?” Guess they were all estrogen receptor positive? Good thing a triple negative patient wasn’t there that day.

People like a beginning and an end—a cure, and end to treatment, and the absence of ever needing to think about cancer again. They like slogans and soundbites. And everyone especially likes a happy ending. A story about a former president’s cancer, the idea it might come back, but given his age, something else will cause his death earlier—that is too confusing! Better to simply think he “won”. An aging actress on the road with her play needs to reassure potential ticket buyers all is well; she’s going to be in the show coming to your town next year. Sell the joy! And so what if, 15 years from now, a small news item in the back pages appears announcing her recurrence and quick death—“I thought she beat that”, people will think before quickly forgetting the story and moving on to the latest young pop stars’ exploits.

But here’s the thing.

When celebrities and headlines go on and on about “cured!” and “beat cancer!” it confuses the people we—regular average cancer patients—have to interact with every day. What do I mean I have an oncologist appointment? Didn’t I finish up with cancer years ago? Old old old Jimmy Carter beat cancer, why can’t I? Look how peppy Joan Lunden is, why isn’t my breast cancer over and done with? Do I really need to point out that celebrities stick to a cancer culture approved script? Am I being too hard on actors and TV talks show hosts for needing a script rather than thinking and speaking for themselves? Whoopsie, did I just write that out loud?

Words matter, as so many inspirational posters like to remind us. A little celebratory slip of the tongue: “I’m cancer free” confuses the cultural conversation around cancer. And that is why so many of us in CancerLand got so bent out of shape about these stories. People without up close and personal cancer experience will happily go back to their fairy tale (My Reality and Your Fairy Tale), and assume the celebrity is “all done”, and cancer is curable.

It seems once I got my cancer diagnosis, I learned a second language. NED, estrogen receptors, chemobrain, pinkwashing, argh, do I need to go on? I do find myself translating at times. And it seems that the area of language in which we CancerLand residents must be MOST careful is when discussing the after-treatment (if there is even a post-treatment status, because generally for Stage 4, there is not) time. So when Rita Wilson says something like cancer-free, we find ourselves having to explain so much. And it is tiring.

This brings me to another little tidbit of translation, or more like re-defining words.

Reading FB comments is always a hazard, I know, but of course I did and the typical stuff happened in threads about Wilson’s news. A few advocates attempted to explain and correct the “cancer-free” issue. Naturally, those who believe that any kind of truth-telling automatically equals negativity, began to scream about it, calling the comments “toxic”. I’m not as active or strident as breast cancer advocates; unwilling to “get into it” very much. But I could not help but chime in with my annoyance at this. I mean, come on, why call a different opinion toxic? Isn’t that a bit overdramatic? In my mind’s eye, I saw a person clamping hands over ears to shut out the opinions they disagree with. And yes, I over-dramatized myself, picturing Gollum saying “not listening, not listening!” LOTR nerds will know what scene I’m referencing.

It irritates me that thoughtful dialogue cannot occur without the situation devolving to this. I found myself wanting to engage in a little careless re-defining or mis-translation myself. I get sick of reading about false positives (because I was a false negative). I know what it really means here in CancerLand, town of breast, but I have this fantasy. I want to call all these people who redefine words like toxic, who think cancer is curable by eating right and keeping a kick cancer’s ass attitude, I want to call these people “false positive”. Because to me that is what is going on: thinking something is one thing, and maybe it isn’t. So part of me is like, OK fine, embrace the positive-negative dichotomy and let’s hope you don’t end up bitterly disappointed in your mistaken idea cancer is really, really gone.

But of course, it is not in me to do that. I don’t like the misinterpretation of words and concepts. And I am tired of the strict black and white boxes being forced around the cancer conversation. Spouting facts does not equal being negative—looking at stats and numbers can actually be quite apart from such silly notions as “don’t be a negative nelly, be positive”. That kind of black/white, half-full/half-empty thinking must come to an end. Embrace the complexity of life, people!!!!

But then, who am I kidding? Everyone wants pat slogans that translate to their liking: “cancer can be cured!” Conversation over, and what have we lost in translation?

But Not Too Real, OK?

I was trying to avoid all effort of any kind last weekend. I wanted to just sit on my butt and do nothing—well, maybe read or watch TV. I chose the latter, and landed on a “Brady Bunch” re-run.

I do not remember the episode from childhood, although I’m sure I saw it back then. In it, Mrs. Brady attempts to write a magazine article about her life with 6 kids, the blending of 2 households, all that jazz. Her submission is turned down by the head of the magazine for not being positive or uplifting. So she rewrites and sanitizes her piece, makes the kids seem like angels and their lives ideal. Of course the fairy tale version gets accepted, and an appointment with a group of magazine staff at her home is made to photograph her, do a little background on her family. Naturally everything goes wrong—miscommunicated time leads to her answering the door in hair rollers, the kids are arguing, one of them has poison oak—you get the idea. Normal life with kids (I guess). Mrs. Brady is mortified of course, but the magazine staff is delighted, and wonders aloud to her why she did not write THIS—real life with troubles and disappointments—challenges of a modern household. She does, it gets published: happy sitcom ending at last.

Despite my aim to not do ANYTHING as I vegged out in front of the tube last Sunday, I could not help but contemplate the meaning of “real life” in Brady Bunch Land, and compare it to our current cancer culture. Now, given that it is the weekend again as I write this, and it is the holiday season and I’m just exhausted, my thoughts aren’t going real deep or anything—more of a passing ponder. I’m sure some social/pop culture critic/anthropologist can take a better crack at this.

Things like poison oak, screaming and arguing kids, answering the door less than camera-ready are not disasters compared to cancer. (I know, I know, I HATE the comparison thing, and I know that just because someone’s struggle is minor compared to others I should not diminish said struggle—but indulge me here, OK?) In fact, as someone who once answered the front door wearing pajamas at 3:47 PM one December afternoon (hey I was ready for bed!)—I found Mrs. Brady’s hair-in-rollers-yet-makeup-perfect-and-cute-lounge-robe-at-the-door laughable.

This weekend, catching up on blog reading, I came across a gentle criticism of pictures used on social media when another metster dies—always an old photo from the time the deceased was still relatively healthy, or at least not in the final days of wasting away. The blogger prefers the VERY few times patients have posted those less than photogenic pictures of what those last days really look like.

I think about this blogger’s words. I think about Facebook constantly removing pictures of breasts in the process of reconstruction. I think about how bald heads are now considered “real”—think about that fracas in October 2014 when a morning TV program did not want to feature a Stage IV patient because she was not bald like a “real” cancer patient. Even society’s version of real is kind of fake! We have this language of “grit”—the warrior/soldier with a bald head—but otherwise looking hale and hearty—wearing boas and heels, or tastefully/professionally photographed mastectomy photos, the new breastless nude that is maybe just as fetishized as the bald beatific smiling warrior (see Random Thoughts On Baring the Scars for my worries on that subject). I think about that scene in the final “The Hunger Games” book, when Katniss is “too scarred/ugly” for the propaganda video to be filmed—no, they make her pretty then artfully use make-up to create new, less scary, more visually appealing and inspiring scars. (Just read a fascinating essay reminding me the books were inspired by our current reality TV shows, and all the implications of that.)

A fake real is what we want. Don’t make it too real. Or hopefully your reality is just Brady Bunch cute.

The debate about how much to “show”, about deathbed selfie culture/oversharing will rage on. I recently read a piece that took a jab at the country star and how the blog/pictures chronicling her final days are boosting record sales. A paragraph about Jolie’s publicized surgeries and how her essays allowed her to control her image while appearing to share “realness” for reasons of awareness-raising struck a chord for me. She was real—but only in a managed “I woke up like this” way, maybe? Is it annoying when celebrities do it because they might gain fame and success, but in cases of regular patients who are really trying to tell it like it is, it’s OK? I admit, I was reminded of the Keller’s attacks on Lisa Adams when I read the piece. Not the same, but the underlying sentiment made me wonder if the writer was even aware of that fracas a few Januarys ago. (And the near universal praise for the “real” surgery dancer, see here.)

What is real and when is it too much? I don’t share pictures of myself very much because I dislike the way I look. But I’ve not held back (too much) on exposing my ugly thoughts. Are they too real? Do you recoil?

I’m not sure many people are ready for REAL reality, despite the popularity of reality shows.

“I fake it so real I am beyond fake”

“Doll Parts” by Hole, Courtney Love knows a few things about real/fake I wager!!!

Take Away This Ball and Chain

This is a sequel of sorts to a post I wrote this summer, Burden of Gratitude. I’d struggled for over a year to write that post. I still wrestle with my feelings of tainted gratitude. I still get a knot in my middle when I see/hear critics of the sexualization, commercialization, and etc. of breast cancer told they should just be thankful for the achievements of the ribbon, especially the just being alive part.

In that previous post I noted that gratitude is used almost like a paddle to smack the hands and mouths of these “naughty and ungrateful” critics. I still think this is the case, only more so. I’m not sure I stressed that point enough in that previous post. While I view gratitude as an internal burden for myself, I also think it is becoming a huge obstacle in moving forward in breast cancer culture, and yes, even funding/research/cure/prevention.

I’ve complained VERY often on this blog about how cancer culture seems to be stuck in a rut, stuck in TV re-runs. Watching this latest episode of Pinktober this year, the business-as-usual races, beer-and-boobs parties, and pink shopping bonanzas, I’m more convinced than ever of the existence of this rut cancer is in. Each issue acts like a ball and chain, shackling breast cancer culture to the same old song and dance, preventing forward motion.

pinkblack

Side note: I get really sick of metaphors in cancer language, but it seems we cannot talk about cancer without them, so I am giving in. So, yep, I’m gonna call anything preventing progress in cancer a ball and chain.

There are many ball and chain combos I could criticize—the never-ending debate about mammograms, the argument that fussing about sexualization is a waste of time—but I think gratitude is the biggest ball and chain.

Why do I say this? Simple. Because when ANYONE—whether they be the head of a major cancer organization, or a mere Facebook commenter—uses the “be grateful for all that pink has done for you” argument to anyone asking for more and better, they are looking back, not forward.

Hey, I said it was simple.

I realize how oddly timed this is. With the holidays and end of year around the corner, most people will be writing about all they are thankful for, and here comes the cranky ol’ Cancer Curmudgeon, saying stuff like “gratitude is bad”.

Of course, I do not mean all gratitude is bad—I’ve made it very clear (seriously, read that previous post) that I am grateful that I am still alive, that angry women decades ago became vocal about breast cancer and the disease got attention, then funding, then treatments. In fact, let’s think more about those women of the past. I am sure that women who “complained” about going under for surgery and waking up with a disfiguring, extreme mastectomy were told “you should just be grateful you’re still alive”, too. Just like those of us “complaining” now.

I’m glad they didn’t just sit quietly with deferential gratitude. Because of their actions, I was able to have chemo first to avoid a disfiguring surgery, to only get a lumpectomy.

You see, I am looking back, considering all that has been done in the history of breast cancer. Why do so many people think only the pink ribbon parades ever did anything for cancer? And why do people assume it was easy to put a pink ribbon parade (or whatever event) on in the first place? Do they really think it was always easy? It ALWAYS takes agitators—yes, complainers—to move things forward.

If I see one more comment on any article or on Facebook tsk-tsking those of us asking questions, raising objections, asking for more, I will scream. It baffles me that whenever anyone criticizes something they are automatically labeled ungrateful and negative. It is possible to be grateful AND critical/analytical AND angry all at once. I am again reminded of a scene in the Harry Potter series, in which Ron thinks a girl with conflicting emotions will explode from it all. Hermione points out that he must have the emotional range of a teaspoon. I cannot help but think anyone resorting to the “haters gonna hate (oh that phrase MUST stop)/you should be grateful/you’re negative” hand-smacking comments, also has a limited emotional range. Being human is complex and involves having conflicting feelings at times. Grow up.

As the saying goes, some people prefer bathing in compliments and being ruined by that practice, rather than listening to criticisms and ascertaining if there is a legitimate need for improvement. Of course there is always room for improvement. Why does anyone ever think things are perfect just the way they are?

It is fine to look back on accomplishments, to acknowledge achievement. But at the same time, one must ask, what else is to be done, what improvements can be made, how much more is there to go? Otherwise, one is just resting on laurels, and I think that is happening in many areas of cancer culture. Yes, lessons can be learned from past examples, but don’t ever think the job is done.

I implore everyone to remove the shackles of gratitude. Gratitude is good in small doses, but don’t let it lull us into a sense of thinking all problems are solved. If the old methods (races, ribbons, and the like) have taken us as far as they can, time for something new. No, I don’t know what “new” is. But I do know when something is at an end.

“While I’m singin’ to myself
There’s got to be another way

Take away, take away
Take away this ball and chain
Well I’m lonely and I’m tired
And I can’t take any more pain
Take away, take away
Never to return again
Take away, take away
Take away
Take away this ball and chain”

“Ball and Chain” by Social Distortion

Thanks And Feel Free!

Big THANK YOU to everyone who likes my last post–a response to Nancy Brinker’s “Seeing Red” letter to the New York Times. And special thanks to those who are sharing my post–even directly to Brinker.

I did consider sending it as a letter to NYT, but their hoops were ridiculous. The suggested word limit is far too constricting for this topic–at least for me. And I want it to be an open letter–I’m not going to wait to see if they deign to give a redneck small time blogger space in their paper. Puh-leeze.

I’ve been tweeting my post to her, Komen, and NYT, but I do not have many followers–or social standing to make much of an impact (remember, Curmudgeon, I’m not very cuddly!). So if you think my post says the things you’d like to say to Brinker/Komen, please feel free to use it–tweet it at them, post it wherever!

And thanks again!!

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