Beware Before I Compare

Truth be told, I have about 20-odd drafts of blog posts on my main laptop. I’ve even had to put the drafts into a few categories, such as “currently working on”, “fix in the future”, or the doomed “maybe never folder”.  In the current folder are 3 different drafts about cancer comparison competitions, or so-called Disease Olympics. I’ve been thinking about this topic for years, from different angles. You know, like when other illness/cause advocates use cancer to draw attention to their issue (hello women’s heart disease month), or when those with other kinds of cancer lash out about all the attention breast cancer gets, and of course, the hierarchy of who has it worse within breast cancer itself.  I swear I will finish them all someday, I hope. But I have a great little anecdote to share right now, because I doubt I’ll remember to put it in the appropriate post draft when I get around to it.  This little tale is a reminder to everyone, my own self especially, to stop wailing: “no other disease uses the battle metaphors; only in cancer are we expected to fight and win!” 

WRONG! (Play game show wrong buzzer sound in your head now.) Continue reading “Beware Before I Compare”

Broken Brain

Whoops it’s been about 2 months since I put a new blog post here. I have written one, just didn’t post–it isn’t quite good enough, and it’s just a little too personal to share, just yet.

Mostly I’ve just been tired, bored, unmotivated. I always see writing advice claiming one should write for some amount of time each day because good writing comes from practicing, working on it, not waiting for “inspiration”. Sadly, I have yet to learn this lesson. I kind of need to be fired up to get inspired and then I write in a giant spurt. I just can’t force myself to sit down and write something unless I really have something to say–it feels unproductive to me. So I don’t like to “waste” time at it; there are too many other things I could/should be doing. Yeah, I know it isn’t really a “waste” of time, I just can’t convince my brain of this.

I’ve still been posting on Facebook, a little, though for a few days there I just didn’t.  I didn’t feel like engaging in conversation with others on their pages. I was and still am jaded. I’m tired of having the same conversations over and over. I cannot join in repeating the “breast cancer is not a Pink party” mantra anymore. It’s not that I’ve become some convert to perky Pink thought, or tolerant of Pink. No, I’m just beyond it and my brain cannot wrap around the fact that the rest of culture has not caught up with me on that point. My view is: “of course cancer is not fun, we are not all warriors and losers, and everyone knows by now that cancer charities are not spending money wisely”. But of course, most people do NOT know these things. I just lack the patience to continue trying to educate people. I know that is wrong–that I’m being VERY judgey when I consider the general population to be so stupid, when I, my own self, did not know these things before I got cancer. I just didn’t think about it much, like most people, who don’t think about things not directly impacting them–because there are a million other things to worry about. And more importantly, I see the Pink/win/warrior tropes of cancer culture as not THE problem, but a symptom of a larger problem in culture, in general.

I posted on FB something recently about “leaving” a problem, some anon quote that was not intended to be about cancer, I just applied it to my current thoughts about cancer culture. Someone asked me how on earth it was possible for anyone to “leave” cancer. Once a person has it, that’s forever. But that wasn’t what I meant. I did not “leave” cancer, I just had to leave the social media part of it–or at least take two ginormous steps back from it. No, indeed, I did not leave cancer in April, on the contrary, I was very much down in it.

In the middle of May I had my annual mammogram, with the big dollop of paranoia that comes with the looming appointment. After all the events of 2014 (see Complicated Relationship with Hope and Scar Tissue for the details of how I got called back for MRI because of a suspicious area and how that threat of recurrence is shitty), somehow I was more calm in 2015. I guess I just thought, no use getting all wound up, it all turned out OK. But somehow this year, I got wound up. I figured since it all worked out the last 2 times, well, this time would be the sucker punch–much like my original DX in 2010 was the sucker punch.

It turned out OK and everything, ultrasound was approved right away and turned up only a cyst, and I am truly grateful. My brain just indulged in some overactive imagination of worst case scenarios. My brain just broke down for a little while.

So, no, I hadn’t left cancer–I just took a breath, for a minute that turned into 2 months.

So this meandering post is just to keep my toe in the waters, so to speak. I will indeed try to motivate my butt into finishing some of my posts, and get moving. I’ll figure out a way to get over my jaded state of mind, and get back to my curmudgeoning, it just might take on a different flavor. Who knows.

What’s Good for the Cat Is Good for the Cancer Curmudgeon

I was slow to the social media thing in my cancer career. No, scratch that, I was slow to the social media/internet in general. I mean, in the 2000’s I used the internet for work, but nothing else. I got my first laptop really late–2005–and just so I could work while away from the office. So it was not until I completed treatment and quit my 9 to 5 that I really USED the internet the way it was intended–to watch cat videos! To share silly memes! Oh yeah, and to find others who shared my disgust with breast-cancer-as-pink-party.  I began my cancer blog late 2012, around the same time Grumpy Cat started to get popular. So I’ve always felt a little kinship with the cute little critter–partly because I began living on the internet so much and she was everywhere, and most importantly those “I had fun once it was awful”-style memes featuring her.

Now, before I continue, I should say I love Grumpy Cat and understand she is not really grumpy–the “look” on her face is a result of dwarfism. But I love the hoopla that surrounds her–messages of holiday joy interrupted with “NO”, or the aforementioned “I did xyz once, it was awful” line that pops up a lot. I love the attitude, her face–the whole grumpy she-bang.

Well, of course I do. I’m a grumpy cancer patient! Continue reading “What’s Good for the Cat Is Good for the Cancer Curmudgeon”

“She Was A Human Being”

This post started in my head as a rant about the expectation that cancer patients be good role models to other cancer patients, or people with “lesser struggles”. You know, that inspiration-porn thing in which a disabled or ill person does something inspiring like run a race or whatever, so a slogan of the what’s-your-excuse type can be attached to it. As the rant churned around in my head it morphed into my usual kicking against all the little boxes cancer patients are put into: if not a role model, how about rebel? Except I don’t wanna be a rebel–rebels need rules as much as the role-model good cancer citizens do! I just wanna be! Why can’t I just be?! Why there gotta be so many rules to follow and boxes to occupy in this effen CancerLand?

OK, let me back up.

Continue reading ““She Was A Human Being””

Turning My Stomach

I know what you’re thinking: you see a picture of Joan Lunden in a post and think this is another celeb-with-cancer bashing piece. Not exactly. I’m certainly no fan of Lunden or any of these celebs sharing their “inspirational stories”–and in my opinion Lunden IS one of the worst of them. But this picture is only partly her fault. Let me explain.

You see, this is an ad for People magazine. That issue of the magazine, that cover, is old. Yet the ad containing the cover picture, with the little items around the magazine cover, yeah, it’s new. I tore it out of my most recent issue of Entertainment Weekly. I’ve been seeing the ad in a few other magazines this weekend–I was, um, sifting through a huge backlog of magazines to clear some out. Yes, I still read actual magazines, sometimes for recipes (glossy, colorful pictures motivate me better). And man, I’ve been behind in reading-‘n’-recipe-reviewing, so this weekend was all about reducing my backlog!

OK defensive digression over.

Are these items holy relics or something?
Are these items holy relics or something?

So in short, I saw this ad a few times and as I reached the last magazine in my pile I yanked out this page and took a good long look at it. As I did so, I understood why it turned my stomach more than the usual celebs-with-cancer stuff I see. Have you seen this ad? Have you really looked at it, thought about it? (I kinda hope you have seen this ad, since I am no picture/computer wiz–and this scanned copy of the ad is not very clear and probably too small, but if you click it, it should get bigger.)

The ad, which IS for People, chose this older issue to tug at heartstrings, to sell magazines (yes everyone seems to use certain kinds of cancer patients to sell product). People magazine is touting their attention to the details as one reason they are so good at telling stories about people worth being in their magazine (that last part about worth is questionable, but I’m going with it for now). Continue reading “Turning My Stomach”

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”

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!!!