A Baby Step

To all of those who’ve liked, commented or otherwise contacted me about the “Take the Mythical Image…” (on WordPress and Tumblr) BIG THANKS. Those of us who refuse or just cannot fit that image–because we know depression, or hate pink, or have mets, or omigoodness have some other cancer (heed the sarcasm there, please), I assure you we are not alone. Whether you choose to simply not be a part of The Image and step aside, or like me, you openly criticize it, good job…it is the needed baby step.
I know I am a broken record about things that irk me–The Image, the sexualization of breast cancer, BRCA testing (as research-good, sold as a tool to fight cancer-no it isn’t, yet), the over-study of the same causes of cancer over and over (alcohol bad, carrots good, we get it, move on people), the misuse of the words prevention/early detection…well, you get the idea…there are many things. IN my humble opinion, the only way to bring about change is to keep asking for it, keep the pressure up. I desire change in cancer and the world at large most desperately.

Ahh the Joy of Late Nite TV

Watching ‘Friends”, preparing for bed, I hear an ad come on for SC Johnson and company. The CEO, a guy named Fisk, was blathering on about the “family standards” of their products, so we as consumers, know exactly what (chemicals) are coming into our homes, in contact with our families. He says they go beyond the industry standard on this (although, I’m learning it is pretty easy to go beyond low standards).

Funny thing was, a few days prior to seeing this ad, I’d participated in a webinar run by Breast Cancer Fund, and it was mentioned how difficult it was to pressure SC Johnson to make these changes in their products. I think the moderator said something like, SC Johnson made a commitment to clean up their products…and then did nothing. BCF or maybe it was Breast Cancer Action (sorry, cannot remember and my laptop ate my notes–still struggling with technology) had to follow up and light a fire under the company’s butt! Then, and only then, did the changes come about.

Fisk failed to mention that.

So kids, beware of the truth in advertising. Some truth might be there, but we never see the whole story, do we?

Breast cancer survivors take back control with unique nipple tattoos

I’m not the only one!!!

Pendulum

I wrote recently that I think in the world of breast cancer the pendulum swung too far the other way from the days when breast cancer was not mentioned publicly to now in which it has become almost a rite of passage and we can not only speak openly about it, it is damn near an unavoidable topic at certain times of the year. That would imply that breast cancer is a normal thing, like menopause, when in truth it is not.

And I dislike the effort to normalize it.

It is not that I actively look for the dark side of every issue, I swear. Some up and coming actor that I used to think was promising–but I am quickly losing admiration for–said something about being an optimist. Nothing wrong with that, it was the follow up sentence that troubled me. He said there is much darkness and pain in the world and that we could choose to see it or see the joy. The quote ends with the “advice” that time is better spent responding positively to the world.

I believe it is possible to respond positively to the darkness in the world. But you gotta see it first, for Pete’s sake. Frankly, we all need to see both. To only see the darkness leads a soul to despair. To only see the joy is to deny the existence of the darkness and how the hell does that help?

I believe the way to fight the darkness is to shine a light on it. If there is a problem, speak up about it and suggest solutions, or see if others have solutions.
I am sure it seems that my blogs tend to be lots of complaints…full of the darkness. Yes, I spend much energy (in cancerland, not always in other aspects of my life, mind you) pointing out the things I think are wrong. The reason for this is simple: I want them fixed, I want to help fix it.

I know there is dark and light in the world, in life–the yin and the yang, the sun and the moon, and all that crap (I know it, maybe someone should enlighten the actor I refer to above). But the point is, there should be balance in world. In cancerland, especially in breast cancer, the pendulum has just swung too far to a point of a forced positivism, that fails to acknowledge the dark…at all.

Yeah, maybe I am like Kurt Cobain–a “Negative Creep” here in breast cancer world. I am only trying to center the pendulum.

Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once & For All

Author’s note:

If you are a breast cancer “survivor” who embraces that ideal image–the pink products, the racing for the cure, etc.– I am truly happy for you. I mean that sincerely, without my usual dose of sarcasm. And just as sincerely, I beg you to stop reading this post, you will probably find it offensive. As nearly always, there will be foul language, because that is how I speak.

This post is for the ones who got breast cancer, and went into it doubting, or maybe at first embracing, what I shall henceforth refer to as The Image. It is for those of us who at some point realized we could not live up to The Image. And for those patients lost and unsure, feeling set adrift, away from the pink anchor. This post is for them–you–us. -anotheronewiththecancer, AKA cancer curmudgeon

Why do I propose this burial? Because I think this mythical image is dangerous. I’m tired of hearing or reading about women who feel they cannot live up to The Image; becoming depressed, maybe suicidal, because of the way this pressure made them feel. I’ve encountered this sort of despair a few times recently, and enough is enough.

I’ve used this comparison before, I think. Let’s say a gun is pointed at your head. Maybe you get shot. There will be blood, there will be pain, and you might die. At the most basic level, cancer is just like that, a gun pointed at the head. You get cancer, you will bleed, you will have pain, and you might die. Most people, when having a gun pointed at the head, would shit themselves. Breast cancer patients however, are expected to run a race, smile, and fight, fight, fight! Like a good little girl. Whoops did I just say that? So when these women cannot live up to the expectations, not only do they feel awful because they have cancer, but they feel like they are letting EVERYONE down, especially those who’ve supported them, but also the world at large that expects certain behavior from the breast cancer she-ro.THIS IS WRONG.

I get it, there is a desire to fit in, to find support somewhere, and the smiling pink parades look inviting. Some women find solace in the support of a sisterhood. (BIG ALERT: I’m an only child and glad of it, so the notion of sisterhood baffles me.) We all want to belong. One of the many problems is, The Image pretends to invite everyone, but it does not; it is actually quite exclusive–I’ll stop short of using the d-word. Dissenters and doubters with breast cancer are ostracized. Don’t believe me? Read Barbara Ehrenreich’s Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. The first chapter is Ehrenreich’s description of her breast cancer experience, called “Smile or Die: the Bright Side of Cancer”. Some of the incidents she described were all too familiar (hint: a breast cancer patient suggested Ehrenreich get professional help for her “bad attitude” I got similar advice while making what I think is a valid point on Huffington Post). In my humble opinion, it should be required reading for ALL newly diagnosed breast cancer patients.

And notice I only mentioned breast cancer patients. But even not all breast cancer patients are invited, I’ve learned by reading blogs. I’ve read some ugly stories about the ones with Stage IV getting shut out of the “support system.” But of course, they are the awful reminder that breast cancer is not totally beatable, as we’ve been led to believe. “They” can never fit into the The Image. *I use they in quotes not to reflect how I feel about those with mets, but to reflect how I believe The Image machine views those with mets.

Guess who else is not invited to the pink party? Patients with ANY OTHER KIND OF CANCER. I hate that. Why are they excluded? That is a can of worms to open on another day, another post. I will offer this thought to ponder: is it because we just expect them to die, and by that I also mean get out of our sight, as an embarrassment like the mets breast cancer patients, because they cannot beat cancer and fulfill that stupid warrior stereotype? Ask your nearest ovarian or pancreatic cancer patient, they can tell you what’s up, in language you may not want to hear.

I knew pretty much from the get-go that I would not live up to The Image. For those who’ve read some of my other posts, it is pretty clear I was never the cheerleader-joiner type. So of course I’d be the glowering dissenter in the corner. Honestly, I did try to be a good patient (not just a good breast cancer patient). I followed orders, took tests, showed up at appointed times, eventually joined a support group. As treatment progressed I learned some hard lessons about following doctor’s orders, like the need to challenge medical proclamations handed to me, because mistakes were made, but that is another post.

I think I rejected the Pinktober stuff even before I was diagnosed. As an alt-punk Gen-Xer, I hate it when I am being sold to, and tend to look for the lies beneath all shiny images, and I knew The Image, along with the pink crap, was being SOLD to me. These days, as a breast cancer patient, the Pink just infuriates me, rather than simply annoying me on an intellectual level.

When some acquaintances walked in a pink event in my name, I was gracious, I love the little pink rubber- duckie they gave me, and I will never forget their kindness. But I won’t EVER walk or run, I won’t buy pink crap. I don’t need to go into the reasons why walk/runs are not effective fundraisers, nor need I explain that cancer simply cannot be shopped away. Other bloggers have done that, and if you’re still reading this post, you already know this.

That said, this post is not me saying, “Oooo look at me, I’m so clever and strong to have rejected The Image without ever falling into the trap”. On the contrary, the marketing, the peer pressure, in cancer communities is so prevalent, it is amazing anyone ever questions anything. No, this is me defending the ones–us–who don’t want to, or cannot fit into this distorted ideal, The Image. I mean that with more conviction than nearly anything I’ve ever said in my life.

I’m not going to go into how The Image developed, there are some good books out there about that. I am aware the advocacy movement started as a way to support women’s health, bring breast cancer out from the whispering shadows, so women could demand better treatment. This is a good thing. But in a few decades, the pendulum swung completely to the other side, to the point that we shout about breast cancer from the rooftops, and there seems to be subtle pressure to be damn near proud of having it while sporting pink clothes and bald heads.

Of course I’m glad breast cancer is out of the shadows, but in keeping with the insane American ideal of “if a little of something is good, a lot of it is better”, now it has gone over to the ridiculous. We need to bring the pendulum back. We need to slow down, find the middle ground. No more ideals, no more she-roes, survivors, warriors, no more hollow “you’re so brave” compliments. I’m no she-ro. I am no warrior. I am not brave, I screamed and cried raged often enough I assure you. I am simply a woman who found out she had a life-threatening illness, made logical, somewhat informed decisions to eliminate that threat, and tried to deal with all the emotional crap that came with it. I made these choices because I wanted to live, not die. It is that simple. Don’t ascribe these words and their hollow meanings to me and my experience, it is not your right to do so.

So to those breast cancer patients, or survivors or whatever you call yourself, who are struggling because you don’t think you are “doing cancer right”, I doubt this silly post will ease your pain. I can’t remove the pressure of The Image from your back, and maybe no one can do that but you. You will need to be the one to take this mass delusional Image and chuck her out the window, where she belongs. The only way The Image will cease to exist is if enough of us ignore her.

I am sorry if I come off harsh. A lifetime of being unable to conform to much has made me a bit rough around the edges at times. The cool kids or the mainstream (in breast cancer, in life) tend to be intolerant of “the other”, and since I usually fall into that category, I cannot help but be a bit snide about being an “outsider” all the time. I tried not to criticize or judge, but at times I feel criticized and judged by the mainstream pink community and it is hard not to reciprocate. I am ashamed of that because I am truly trying to be a better person.

I do not have any proposals on how to solve what I think is a problem (and yes, it is a problem if someone goes through cancer treatment successfully, and then wants to commit suicide for being unable to live up to The Image–no matter how you spin it). As usual, I am the jackass in the corner pointing out what is wrong without much of a constructive suggestion. I don’t have a degree in Sociology or Anthropology, which is probably what is required to understand the nature of the cancer subculture. If I could lead an army of like-minded folks down the highway in October, destroying every hint of pink I saw, I would do it, but I doubt that will ever happen. All I can think of to do is reject it for myself, and offer a helping hand to anyone else who wants to do the same.

Celebrities Are Not Qualified Health Educators (But Some Can Do a Little Good)

I had a great conversation the other day with a friend about, of all things, guests on “Inside the Actor’s Studio”. She’d been excited to catch up on the episodes on her DVR, she couldn’t wait to see a certain big name celebrity. But it turned out he was a giant boring dud. What a disappointment! But she watched her accumulated episodes and landed on one featuring Jim Carey. She was not a fan, prior to watching this episode, that is. Turns out he was pretty clever on the show, and she wound up liking him.

I know how she feels. I used to dislike Pam Anderson. Even though I knew she was a big animal rights supporter, I just could not tolerate her, so I changed the channel when she came on. Except for the time I didn’t. Much to my chagrin I found out she was not an idiot. She has a lot of heart and speaks quite intelligently about the topic so close to her heart (and it helps it is an issue near and dear to me). I won’t go so far as to say I’m a fan, but I admire her now.

I am a news-politics-pop culture junkie. I swallow stories, current events, and scandals whole. But I’m the kind of addict that sits in the corner making the snarky comments about it all. I am not the type to have any kind of hero worship for celebrities, and certainly not for any politicians. It cracks me up when parents get all outraged and start criticizing the pop tartlet of the moment: “Beyonce/Miley Cyrus/Rihanna should be thinking of their young female fans…they are role models, so they shouldn’t date abusers, act silly, shill for a soda company.”

Puh-leeze what world do you live in? Lots of stars go horribly awry and act out. Johnny Cash? Ray Charles? Names ring any bells, folks? I couldn’t bear to watch the biopics featuring their bad behavior…it was just all the same story. Struggle, get famous, get hooked on drugs, hit bottom, find redemption, make a big comeback. Same old movie, over and over again. Today I see on the news that the Biebs is going down the tubes again. How is this news or even remotely surprising? Repeat after me: these people are not role models I don’t care how nice and upstanding they present at first. They are humans; NOT better than any of us.

So where am I going with this complaint? Well, as with Pam Anderson, I’ve found another one I now begrudgingly admire: Fran Drescher.

I NEVER liked her. I DESPISE her voice and laugh, and I doubt that will change. I find the shows she is on just–unfunny. I never found her funny. As with Pam, I generally changed the channel or turned off the TV is she came on. I was dimly aware of her past with cancer and that she had a book or something about it.

So she was on my TV the other day, promoting something, and mentioned her website/foundation, Cancer Schmancer.

Stop right there. One of the most infuriating things in the world are celebrities who get some illness then suddenly start a foundation, or a campaign to raise funds/awareness/or some other benevolent action. There are those two rocker/country women who I used to sort of be ok with (can’t say I liked their tunes much), who write their own songs, actually singing them live on TV shows (unlike some mentioned above), and play guitars (they are separate solo artists, I do not mean to imply they are a duo). Both women got breast cancer at different times, and they embraced Big Pink.

I no longer like them AT ALL.

Hell, I’m even suspicious of celebrities who shill for prescription drugs. Yeah, that’s gonna make me want your product: and overpaid celebrity, getting paid even more by an obscenely wealthy pharmaceutical company. And don’t get me started on some big name model (sorry, in this case I actually forgot her name) who was in a car accident and went through a long recovery. She is back now and her publicist, manager, or who knows what entity, thinks she needs to make a comeback splash by associating herself with some likable health cause. So she goes on TV and proclaims blood donors saved her life. Granted, she needed the blood, but didn’t the doctors have a hand in it? Yeah, yeah, doctors are rich (so they don’t need a fundraiser), and are not popular enough to warrant fuzzy warm televised shout outs. But how about start a college scholarship fund for poor kids who have an aptitude for science who might become great doctors, or great researchers, if they had enough funds to get to college, or better yet support some of these young geniuses I hear about like Jack Andraka, coming up with better ways to test for cancers, but who had to struggle to get the “established” scientific community to pay attention to his invention?

So I finally made my way over to the Cancer Schmancer website. I have not yet had a long enough opportunity to explore it fully, but from what I did manage to see (thanks crappy internet connections that keep cutting out every time I want to go to a new page), looks like the stuff I believe in. Lots of info about the unhealthy additives in the products we use, info about environmental causes of cancer. Sigh, of course, there are still places to click that say “shop” or “what you can do”–as in how to avoid buying products with harmful ingredients, which are more prominent than the links telling us how to pressure industry from putting them in products at all (remember, it is up to the individual–so if you get cancer it is YOUR fault–yes I’m being sarcastic), pushing the concept that early detection saves lives, and we in (breast) cancer world know that some cancers, no matter how early they are caught will stubbornly be fatal, and my favorite–how to “prevent” cancer through diet and exercise…as if that info were not available everywhere else in cancerworld.

So, yes, I now admire Fran Drescher, because she is doing something intelligent and useful, unlike ABC news and/or Brooke Burke-Charvet with their stupid confusion of the words “prevention” and “early detection” (yes I will keep picking on them until they figure out the differences in these concepts and stop spreading lies to viewers). I will be happy to point the uninitiated-to-cancer to her website. Best of all, her website is a “gateway website”, leading to websites like Breast Cancer Fund (it takes a little searching, but I’ve seen the link), which features more heavy hitting info, and a staff of non-celebrities, who work it in the trenches everyday to do their part to fight cancer. They may not be famous celebrities, but their contributions are more important.

Don’t Speak

I’ve seen a lot of items on blogs lately listing the silly things that people say to cancer patients. This issue rears its ugly head every so often. I will not stop commenting on all of those blogs that we need a list of snappy, or thought provoking (as in silencing the person who makes the comment) comebacks that we cancer patients can use when it happens. I wish such a tool had been handy for me upon diagnosis.

Until then, I do have some advice for those who ask, “What can we say to our loved ones with cancer?”

Don’t say anything, it is no longer your turn to talk. It IS your turn to listen.

I grew up around lots of talkers. All the women in my family talk so much I rarely get a word in edgewise. And because some branches of the family hail from a Dixie state, they inherited that speech pattern of Southerners…in which it takes forever and a damn day to arrive at the point…that is, if they ever get there. Don’t believe me? Read the essays of my favorite humorist, Celia Rivenbark–she explains far better than I ever could. (Just look for her books with awesome titles like “Stop Dressing Your Six-Year-Old Like a Skank”, or “You Can’t Drink All Day If You Don’t Start In the Morning”–these books pulled me out of my post-treatment depression). Finally, at the ripe age of 41, I am able to say to my mother, when she interrupts me for the 100th time to jump off from something I said, midstream, to a point I was NOT heading for: “will you shut up and let me finish my damn thought for once!”

This inability to be able to finish thoughts without being interrupted is probably why I start blogging. Hmm. But, like a good Southern raised girl, I digressed, didn’t I?

The point is, cancer patients will usually ask for it if they need an actual answer. (Not always, however, and sadly, that is where it gets tricky.) When a cancer patient begins honestly expressing his or her fears, please, I beg of you, do NOT answer with those hollow platitudes like “Think positive” or “I’m sure it will be all right.” No, it is not alright and do not tell us how to think. No one is allowed to tell another how to think. Ever. Period. End of discussion.

Again, this is the time that YOU listen to the patient. If you think their thoughts are going in a dangerous direction, get professional help, for pete’s sake, do not tell them to just cheer up and think positive, you are so not helping if you do. If they are dangerously depressed, those trite comments are absolutely useless.

Don’t speak. Listen.

Not Nanny State, Nanny Phone

Politicians like to go at each other over issues like the giant soda ban, saying that government should not try to set laws to prevent people from engaging in behavior detrimental to their health. People should be able to make decisions that hurt themselves on their own…that is the idea of freedom Amurrrica was founded on, dammit!

Meanwhile, no one was watching that our devices are doing what some of these lawmakers want to do, or not to do, creating the Nanny Phone rather than the Nanny State.

Earlier today, hooking my (new, er, replacement) smartphone into my car stereo to stream some music, I guess I had the volume up too high in my phone’s opinion. Just a few seconds into the first song, either the app or the phone (I have not been able to figure it out–yet), flashes the message that listening to music at high volumes for prolonged periods of time will damage my hearing, therefore, it adjusted the volume to “well below the damaging level” (I think that is what it said, the message went away too fast and I was in shock).Are you freakin’ kidding me phone?

phone piece of shut

 

First of all, I went to tons of concerts during my misguided youth, loud aggressive bands in small halls & clubs, standing too close to amps. I know my hearing is already damaged.

Second, yep, gonna pull the cancer card. Hey phone, I just went through cancer. While I have every reason to expect to live another 40 years, I also have every reason to NOT expect that, because I know all too well how quickly health threats appear. So I’m gonna enjoy life, turn up the volume to 11, you can’t stop me!!

Oh silly smartphone, you so crazy!