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?

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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”

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”

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!!!

Cells Don’t Have Brains

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 (see this old post Why This Smart Ass Does Not Kick Ass for early thoughts on the subject).

I’ve been writing this post, off and on, for a long while now—maybe years. I got started one day reading a post I heartily agreed with; a discussion on why cancer is not a gift (roll my eyes over that old cliché, gag!). I read through the comments and one patient vehemently declared, no, cancer is not a gift—it’s evil!

While yes, I certainly am on board with the whole “not a gift” thing—nooooo, it isn’t evil either. Without a brain, cancer cells cannot have purpose or intent. Without purpose or intent, cancer cannot be evil. Don’t get me wrong, it feels that way to me much of the time. My first reaction, like so many other patients, was cut this thing out of me now! I envisioned the classic “invader”, the idea it was some sci-fi “Alien” thing.

It took a long time, and I still must curb my thoughts and reactions, to ground myself and my view of cancer as some fantastical creature, some demonic possession to overcome. It is easier to think cancer is some evil invader, not one’s own body gone wrong, failing, betraying. Cancer is not sci-fi, it isn’t even alien. It’s just me, my cells—but gone wrong.

I have nothing to say to cancer, because cancer doesn’t have ears, so cancer ain’t listening. And yes, again, I realize letters are a coping strategy—like journaling or, cough cough, blogging! I realize many of us must frame cancer experiences as a story. And as someone who has shared her story via blogging, it is a bit unfair of me to criticize the storytelling of cancer—this beast or invader who must be met on a battlefield, and vanquished like a dragon or something from King Arthur times.

I guess some of my discomfort stems from a growing unease with the storification of cancer, and yes I do it too. But sometimes it strikes me silly. Like, did I battle the traffic to get to the grocery story, fight my way through obstacles (other customers in the check-out line), to emerge victorious and return home with my booty (groceries)?

I know, I know, having cancer is not as mundane as a trip to the store. But on the other hand, I fear making it too epic. I mean, maybe I have made it epic too much my own stupid self—I’m still blogging about it all these years later after all.

I guess what I’m saying is—my coping strategy is quite different. I NEED to know that cancer was not deserved, that it was in fact, maybe quite random. Something happened that triggered the cells to divide improperly—and it is just that simple. It is tempting still, to view my body as a traitor, but it isn’t. My body just isn’t smart enough to make a plan of betrayal—my body contains a brain, but each cell doesn’t have one. I NEED to know that my current status of not having any evidence of cancer is just a result of methodical medical interventions, not any of my lackluster abilities (because if it depended on me, well, I’d probably still have a tumor). I take perverse comfort in the randomness. At some point, maybe someone will discover cell division run amok is not random, that there are triggers, and I NEED to think about that, to know that science, not epic tales, will be the end of this.

*Special thanks to one of my clients, The Engineer, for playing midwife to this post.

Rare Curmudgeonly Cheer

I am prone to shouting “this is why I love the Internet” when I see dumb stuff that makes me laugh. The meme with Joaquin Phoenix’s head progressing toward the east coast to represent the hurricane threat. A video of a bird throwing cups all over the place. Cat videos. Cat videos. Cat videos.

Oh I know, ire in comments and on Twitter, idiots sharing misinformation (“I’ll be right with you, someone on the Internet is wrong”—I love that cartoon), outrage at the slightest infraction, yeah the internet can be an ugly place.

But on the other hand, the Internet kind of saved me when I was in my white-hot-anger-at-Pink phase that October after treatment. Via blogging, and eventually other forms of social media, I learned I was not alone in my loathing of Pink—the rah, rah, the sexualization. Granted, I’m not as active as most, don’t have a huge follower base or whatever, but what little interacting I’ve done has been a comfort.

True, I’m a Curmudgeon, not particularly social, not as involved in the “community”—just my natural shyness and solitary tendencies (it’s an only child thing) at work. But, I know the community is there, and I am in it a bit. And I know there are thousands of patients who share my views and feelings. Knowing about those thousands became very important today.

I was in a conversation with a woman I run into often in my line of work—not a client, but another who provides services for my client. She is a very forward person—if she thinks it, she says it, regardless of tact. I am generally polite with most everyone, and try to keep my conversations about innocuous topics (“how about this weather?”). I tend to steer away deep discussions with people I do not know very well.

Today she brought up some NPR broadcast about how some cancer patients don’t like certain words—survivor and war were the ones she seemed to have latched onto—and how new words have been invented by patients. I think I’ve heard the broadcast she was talking about, but maybe not. Didn’t matter; I know this topic well!

She point blank asked me what I thought of these words. I calmly said I agree; I dislike most of the language in cancer. Of course, it is hard for me to not get very “deep” when discussing this topic and I found myself saying how much I hate things like “save the ta-tas”.

She said something like, “well, I think that is just how YOU perceive that phrase, that is not how—“

And I cut her off right there. I did so with great conviction.

I pointed out that yes, the intent behind that phrase is a clever, attention-getting ploy to “raise awareness”, but I am FAR from the ONLY person who dislikes the phrase. Not, by a long shot, the ONLY one who realizes that getting breast cancer often results in the amputation or mutilation of breasts—and how a slogan like “save the ta-tas” seems like it yanks support from the ta-ta-less, that it should be save the lives. No, there are thousands of us I told her. Maybe millions, tired and fed up with all the pink, with the baggage of October, of all cancer issues. I stated it as fact. It is not hard to find this anywhere on the Internet, voices raised in criticism of all the pink nonsense.

She quickly changed her tune, and pointed out that it should be about “saving the lives”. From there we progressed to a quick, but lively discussion about cancer, AIDS, patient blame.

Our conversation ended well—and perhaps I opened her eyes. Maybe not.

But for me the point was having that conviction. I KNOW there are soooooo many of us out there, loathing that old cancer-is-pretty-and-sexy thing.

No, it is NOT just how I perceive it.

Standing there holding my smart phone, I could’ve pulled up MANY articles that would prove that nope, it ain’t just me and how I perceive it.

As I tend to be less motivated to write blog posts for a number of reasons, I try to remember that every single criticizing post about all this pink crap—even if mine are on page 100 of a Google search for this stuff—are out there. The sheer number proves that NO, it isn’t just how I, or you, or anyone new to this breast cancer mess who just hates it, perceives it. When the newly diagnosed and disgusted are told, “that’s just how you perceive it, that silly slogan is harmless”—she can whip out her device and point out to all the ones who perceive it exactly the same way, and the ones who can explain why the slogan is far from harmless.

This is why I love the Internet.

(OK, OK, this post wasn’t exactly cheer, sunshine, and rainbows, but it is about as syrupy and cheery as I get. Next up, back to my regularly scheduled curmudgeon-ing.)

You’re A Mean One….

My fave piece of holiday wear.
My fave piece of holiday wear.

I have not been able to write and post lately. The final two months of the year are busy for a pet sitter, what with all the client travel. I’m so tired, when I sit down at any point and get online, the only thing I want to do is find Vines of animals mewing or barking, to entertain the pets I’m sitting. I really need to start making Vines of my own of my pets reacting to the sounds emanating from my devices.

The other reason is of course, I’m a Cancer Curmudgeon. This time of year CancerLand blogs are filled with posts about gratitude and joy, still alive in the face of cancer. I AM grateful to be alive after cancer, and grateful to be super busy right now—for the money, and the distraction that keeps me from focusing on my anxiety. 2014 has been my year of fear, and if I just keep moving, I don’t think too much. So I move.

It’s just that my blog is mostly an outlet for my rants, complaints, gripes, etc., and this time of year does not seem to be a good time to post such things. So I don’t. But that does not mean I have not found things that annoy the hell out of me.

I worry my curmudgeon-y-ness has made me incapable of seeing the good in anything. My ability to grouse even in the season of good cheer makes me think, oh man, what if I’m The Grinch?

I’ve found myself at odds with so many articles I’ve read about cancer lately. News tidbits that so many folks seem to rally around just piss me off. I do not like anything anyone says about breast cancer at all—whether they support the rah rah Pink stuff or criticize it. I don’t like Pink’s message, but I cannot seem to even agree with those trying to counter it! I don’t like anything—what is the matter with me?!! I am the worst breast cancer patient ever!

OK, maybe not. I’ve been doing some soul searching, thinking about why I blog, what I hope to achieve, etc., lately. I know I cannot offer counsel or advice, only a testimony of cancer as I see it, with the idea that if anyone sees cancer in some of the same way, they are comforted they are not alone in their views that are not exactly the “norm”. Because during and after treatment, I often thought, “am I the only one that thinks…”, I sought out blogs and began one of my own. I am the Cancer Curmudgeon, no more, no less. I notice whenever I tend to gain a few followers on social media, I lose a few. Guess I should post warnings about the nature of this blog and my attitudes more frequently. My only message is: if you think this, I thought so too. There are times I disagree with everyone, and everyone will disagree with me. “Oh well, whatever, never mind” (do I really need to list the source of that quote?). I hope that is enough for some.

Lovers of Dr. Seuss’s “Grinch” (the book and the 1966 cartoon, not that horrible Jim Carrey/Ron Howard film) know The Grinch finally learns the power/magic of Christmas, joins hands with the citizens of Whoville, sings that silly song, and carves the roast beast. So maybe being The Grinch is not all bad. I’ll likely never start holding hands and such in CancerLand, but I am capable of growing my heart—I hope that comes through in all of my grousing.

Maybe this post is just a roundabout way of saying: look out, more grousing to continue in 2015!