Greener Grass – The Disease Olympics Part 2

OK, Part 2 has 2 heads, how appropriate. See Part 1 here.

Where to start?! I’ll just plunge in with inter-disease races first then move on to the intra-cancer comparisons. Please note, that while this post is going to be critical of how other illness advocates present their message, I am so NOT saying their messages are not valid. Indeed they are valid, but the lack of knowledge and understanding is distracting for me, so I’m calling it out.

tumblr_na66sksUrN1qg3yejo1_1280My annoyance with the disease comparisons spiked over a year ago (or 2 years?) when I saw this screen grab of a tweet from a comedian I’d never really heard of. It set me off because of the fight language and the blame issue. Puh-leeze. I’ve written enough about how people with cancer are blamed, and so have others (see Blaming the Cancer Patient). My first thought was, has he never spoken to a lung cancer patient? What is the first thing lung cancer patients hear? “Oh did you smoke?” News alert! That is blaming at its finest, most insidious! And we blame cancer when someone dies do we? Um, no. If that were true the headlines would always read: “Cancer Kills Another Pop Star”, rather than the one we nearly ALWAYS see: “So and So Lost Their Battle with Cancer.” Language, word choice and placement matter greatly. But perhaps I’m being too harsh on this guy. Maybe it’s only when we live here in CancerLand that we notice these subtle language gymnastics.

My frustration with the mental illness awareness campaigns intensified even more when “Supernatural” star Jared Padalecki, in a “People” magazine interview promoting his new charity, said, “If somebody has cancer, they’re not embarrassed to have cancer – they know it’s not their fault. They know it’s a struggle. But, for some reason, if someone says they’re depressed, they assume that people are going to look at them like they have three heads.” Again with this bizarre notion that cancer patients are universally supported and never blamed, do not suffer from feelings of self-blame. Again I wonder if Padalecki even knows any lung cancer patients, who are notoriously blamed for their predicament.

At the bottom of this post I include a few links to articles about cancer patients and guilt/self-blame—it isn’t just me who blamed myself. As I noted in my “Did You?” post ages ago, we are bombarded with headlines on magazines, or just any media at all with quotes like: “eat this magic food to prevent these kinds of cancers”, or “50% of all cancers are preventable by modifying diet and exercise,” (it is Otis Brawley, Chief Medical Officer of the American Cancer Society who often says something like that). Cancer patients “know it’s not their fault”????!!! Really????!!! I guess big stars live in a bubble and don’t read headlines on magazines in grocery check-out lines. Because it was those headlines while waiting in lines that really contributed to some of my post-treatment depression, my constant self blame.

Look, I agree, mental illness has a stigma. In writing this post I pondered whether to reveal the fact I’ve been on medication before and after my own cancer diagnosis for mild depression—I’ve been on it for years. I figured people would think 1) that my depression is why I’m a Curmudgeon (no, I’m medicated and still like this) and 2) I’m trying to validate my stance by saying I’m part of the mental illness community. I’m not; I’m merely trying to consider this from all angles.

But here is what I suspect is going on, and I might be 100% wrong. The messages of “if we have not been personally touched by cancer we know someone who has” have convinced society that everyone “knows” cancer. That really isn’t the same thing—a lesson that crashed down on my head soon after my own diagnosis. For me, and I suspect many others, cancer is nothing like the way it is shown in media fiction and PSAs. But now the general public is convinced that cancer patients are never blamed because they are not blamed in the TV ads—and so there is a bizarre disconnect from reality. But that disconnect doesn’t seem to stop spokespersons for other causes from using these falsehoods as a frame of reference to push their own agendas. They buy into the notion that the cancer patient is universally supported by the races and loved ones. They know nothing of the Institutional Knowledge I think comes to a cancer patient who has done a little time in cancer social media circles.

This frame of reference is used to the extreme every February, women’s heart disease awareness month. Sure, the stat about heart disease being more deadly than breast cancer is bandied about all year long, but February is intense. Breast cancer patients and the general population don’t even have time to recover from Pinktober shoving breast cancer down our throats when heart disease spokespeople begin over-using the phrase “breast cancer” all over again. I’ve long suspected the tide is turning in the perceived support for rah-rah Pinktober—there are more and more critiques and complaints about it each year.  What does this do to people’s minds, their subconscious? Are they hearing the warnings about heart problems or are they hearing that damned phrase “breast cancer” and turning their mind off? Breast cancer awareness suffers from over-exposure, and this is made worse when advocates for other health issues use that over-exposure to sell their own cause. Gee, thanks a lot.

Still, advocates for heart illness awareness have a point. Breast cancer has wrongfully become a bigger monster in the minds of women than heart disease. Breast cancer organizations AND the medical industry both are directly to blame for this. Early this year I wrote about a new cancer center built in my area dedicated to women’s health, but the advertising was all about breast health. Breast cancer is a proxy for women’s health. No mention of the more deadly heart disease in the magazine article/free advertising I read about the new center. No wonder heart disease advocates are frustrated. Cancer is the boogeyman the health industry uses on us, to the detriment of education about other, more pressing disasters.

Full disclosure, my maternal grandmother was diagnosed with breast cancer as she was hospitalized while dying of heart disease. She was not treated for her cancer, obviously. Both my mother and her sister (the aunt who was diagnosed with breast cancer 2 months before I was) were on blood pressure and other heart-related medications at an age younger than I am now—I am currently not. I always figured heart-blood things were going to be my future. Cancer was not even in my peripheral vision. Just another reason why I always say I was blindsided or sucker punched by breast cancer. So in many ways, my personal story is the opposite of what is considered “the norm”.

Again, I think the heart disease advocates’ message is valid, I’m just frustrated with the way they choose to present it—by using breast cancer. I was told on Twitter just the other day that saying heart disease kills more people does not diminish the breast cancer issue, it is merely an attempt to bring awareness. But the truth is, saying one thing is worse than another is inherently making a competitive comparison. Is heart disease worse in this particular competition, due to its higher body count? Yes. But it still causes me to wince—because as the previous paragraph describes, cancer seems to be the bigger problem for me at this stage of my life.

Please note I’m not taking sides here—everyone is to blame. This situation is just beyond fucked up. And no, I don’t have a solution to offer except: stop using cancer/breast cancer as a tool in your campaigns. The assumptions made about what it’s really like to have cancer are not always accurate. And using breast cancer to make a point, as a frame of reference may not result in directing attention where it needs to go–in the instance of this tired Curmudgeon, I merely stop listening altogether; I wonder how many others do too.

I get tired of seeing graphics created by a variety of organizations saying their disease-afflicted body part is just as important as “boobs” (I hate that word, see Some Word Problems), that their disease is not pink. (Thank you to @bccww for helping me find some of these things and helping with this post!) I know some folks have gotten riled up about it on Facebook. I see both sides of the argument. The advocates for other diseases see all the attention breast cancer gets and are motivated to both strike out at it and use it to get attention for their own cause. Advocates for other kinds of cancer use the tactic too, with the ever-present “Not all cancers are pink”, featuring a ribbon of some other color, associated with the cancer being represented. What everyone fails to realize in these moments is that many breast cancer patients hate Pink, does not recognize those who say repeatedly, cancer is not pink, or the color pink is not the actual cure. I hate the color divides. Sigh.

And with this I turn to the intra-cancer comparisons.

That Pancreatic Cancer Action PSA is a shining example of how frustrating the whole “this kind of cancer is easy, mine is much worse” scenario is. The best response to the whole ad was I Hate Breast Cancer’s line:  “If you’re going to wish for breast cancer, make sure you put in a special request for the non-metastatic kind.”

Because guess what, so many people think breast cancer is all solved, never causes death anymore! And yes, I realize the metsters will point out breast cancer is NOT deadly, only metastatic breast cancer is—I’ll deal with one downmanship within breast cancer patients in the next post.

Like the mental illness, heart disease, and all other health issue campaigns, advocates for other cancers have swallowed the Pink Kool-Aid and concluded that all of us with breast cancer are wearing pink feather boas and having some kind of party—or so it seems to me when I see crap like this. I guess this makes it easier to use breast cancer as a scapegoat (see What Is It About Breast Cancer That makes It Everyone’s Scapegoat?

I’ve written about this issue a few times before: Does Breast Cancer Owe It To Other Cancers, First Ribbon Problems, and Want Attention? Just Say Breast Cancer. I’ve probably said most of what I think in those posts, but here is just a little more.

The biggest divide I perceive is between lung cancer and breast cancer—again because of the higher body count lung cancer causes. I once read an article by a woman who had both cancers and unequivocally claimed lung was worse because of the stigma associated with it (I cannot locate it or I’d link it here). She claimed she was never blamed or asked behavioral questions about her breast cancer. Well bully for her, I did not have the same experience. Even with that sentence I see I still have resentment toward her and her article, when it really should be aimed at the public—for asking stupid questions out of fear, out of a need to have imaginary control over their own cancer risks (again, read Did You?—I said all I need to say there). But I remain frustrated at the reinforcement of the idea that no breast cancer patient ever has had to put up with some blame, yes, even when it is significantly less than lung cancer patients. I don’t like anything that does not give a full and clear picture of the truth.

Some time ago I read another piece about the lung cancer stigma, and it was fantastic. It posed the question if lung cancer patients who had smoked deserved less compassion than those who had not, a very scary question and response. I agreed with the author on so many fronts except maybe one. She was a big supporter of all pink races and activities and was not suggesting that breast cancer awareness should tone it down. I’m not so sure about that. I’ve said it before and say it again: awareness is a two-way street. Are the pink-crazed party, oops, I mean, race, organizers at all aware of the fallout they’ve created? The animosity?

I’m not “picking on” lung cancer, I just know it has the higher body count. There is quite a bit of bad blood between breast cancer and gynecological cancers too. A local breast cancer ONLY support organization is called Women Supporting Women. (Disclosure–yes they were good to me upon my own diagnosis, although ultimately I got more support from the center at which I was treated, near my work, not my home.) WSW was founded by a breast cancer survivor for women with breast cancer. They took a beating on Facebook some months ago–several people piping up and asking why there was not a race for kidney, pancreatic, etc, cancer. Their answer was that breast cancer was what they were founded for. I get that, but their name is misleading–at the very least include the gynecological cancers! But I don’t sense change coming anytime soon.

I’ve had people tell me quite bluntly: “If I get to pick, Id (sic) rather get boob cancer. You can live without those and people tread(sic) you with love, caring and compassion when you get that cancer.” People get very angry when breast cancer patients, with our perceived advantages, complain, when we bite the hand that feeds. I used to think yes, breast cancer patients have an obligation to advocate for other kinds of cancer because of the bullying of the Pink ribbon. But these days I don’t think so. Too many have bought into the ideas of breast cancer, and think we are ungrateful (see Burden of Gratitude), and I’m not sure their minds can be changed. I’m sure to get flak for this post too, and I can direct people to all the older posts I’ve written, explaining my ambivalence about this topic, but it will be to no avail. So I ask my questions and expect no answers or solutions.

Breast cancer patients contribute to the misconceptions at times, too. There was an awful piece in HuffPo a couple of years ago—I will not link to it because I am aware that the author of the piece was sorry about the insult to other cancer patients. She did claim however, that some cancers, such as thyroid, are easier than others in terms of treatment and survival. Needless to say the thyroid cancer community roared back in the comments to the point that it became just piling on, with later comments not contributing new insights, just being nasty. Her overall piece, a list of truths or realities one only gets upon actually getting cancer, was quite good—it was a shame the Cancer Olympics got in the way–and yes she put it there.

I’ve also read MANY times breast cancer patients, soooo angry about the sexualization of breast cancer, ask, how about we treat other cancers the same way? It is a tone deaf question, and a foolish one. Many patients with other cancers, lacking a good prognosis due to lack of research, from a lack of—you guessed it—funds from silly sexy breast cancer awareness campaigns, would be oh so glad to have a butt cancer campaign, or whatever, to get the same “status” breast cancer occupies. As much as I hate the sexualization, this is a bad strategy in my book. Again, I explained all of this in Burden of Gratitude. When I see that kind “let’s sexualize prostate cancer” crap I groan–this is exactly why I hate comparing cancer.

Ultimately we all suffer from a common disease: The Grass Is Always Greener On the Other Side of the Fence Disease. Mental Illness patients look to cancer and think all cancer patients get tons of support and no blame—they only see the green grass of having cancer. Heart disease advocates see a disease with a lower incident rate yet higher funding income and just see our green grass. Patients with any other kind of cancer that isn’t breast see our green grass—or pink as the case may be. We breast cancer patients wonder about the greener pastures over on other sides of fences too. None of us completely see the brown, dead grass patches on those other sides. And I think those brown patches are spreading, maybe they’ll be harder to miss.

I’ve written this before but it bears repeating: the high or low body count doesn’t matter to the one doing the dying, or to the ones that love them. I think often of the example of Beastie Boys’ Adam Yauch, who died not long after I completed treatment, of salivary gland cancer. It’s an extremely rare cancer, so it won’t be labeled an epidemic, people won’t make signs and t-shirts exclusively for it; it will merely be lumped into the fights for “all cancers”. But how is that rarity a comfort to his family, to his fans? His death at age 47—a number I’m fast approaching—was still horrible. We can argue about which disease community has it the worst all damn day. The answer will always be not one community—no, it will be the dead, regardless of the cause, and their loved ones. They have it the worst. There’s no competition.

The blame or guilt of cancer patient links as referred to above:

http://well.blogs.nytimes.com/2012/06/14/life-interrupted-feeling-guilty-about-cancer/?_r=0

http://www.cancer.net/coping-and-emotions/managing-emotions/coping-guilt

http://www.huffingtonpost.com/barbara-jacoby/stop-making-cancer-patien_b_6169134.html

https://vimeo.com/60463850

Part 3 is on the way, about how horrible we breast cancer patients can get toward one another.

 

 

 

Advertisements

Being Disturbed Calls for Another Re-post

That recent article about rejecting the breast cancer warrior role (written by a doctor whose wife died of breast cancer) has provoked some interesting reactions in social media. I’m actually kind of annoyed by BOTH the supporting and protesting reactions. I’ll write a post soon explaining what I mean by that. In the meantime, I realize I still have the same strong convictions about this issue as I did well over a year ago. Here is what I wrote then. Hope to have a new post about it this weekend.

Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once & For All
Posted on March 28, 2013 by Cancer Curmudgeon

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.

A Cancer Free Mother’s Day

A/N: This post will address my discomfort with what I perceive as the way Mother’s Day is now linked with breast cancer. I’ve read a few blog posts about mothers recently, and I think I’m in the minority with my discomfort at this association (again, maybe this is just what I see). I can only speak from where I stand: a woman with breast cancer who is not a mother, whose own mother does not yet have breast cancer, and who was my primary care-giver during cancer. I realize several bloggers I read had mothers who died of breast cancer, and as I do not, so I can only empathize. I hope this post communicates empathy, and is not tone deaf.

That said, I will try to be delicate, but I still think this post will offend some readers. Please proceed with caution, or maybe don’t read.

Later March through mid-May now mirrors October for me, in my Mid-Atlantic American resort area. I cannot get down a street or open a local paper without seeing a poster-sized advertisement for some race, walk, softball game, or other activity to benefit local breast cancer organizations.

In many ways, Pink invading this time of year makes more sense than October. Pink is often associated with springtime. The days are usually warm—great for races or outdoor games. Plus, so many harvest/back-to-school/holiday season events happen at the end of the year, I suspect moving breast cancer races to springtime means less competition from those other events (this may only be true in my region, I don’t know).  As I wrote about wanting to reclaim October last fall, I wondered why October is designated as Breast Cancer Awareness Month; I thought a spring month would be more appropriate. I think I used good ol’ Google, and never got a full answer. Or maybe I’m just being wishful—I hate Pink painted all over my beloved golds and oranges—so a BCAM move to a spring would be a relief in my view. *My apologies to those reading who are not in the Northern Hemisphere, for my American seasonal POV here.

Some of the shenanigans associated with the local fundraisers this year are the topic of maybe another post, but I’m grappling with another painful area right now. What is bothering me is the linking of Mother’s Day to breast cancer.

I noticed it last year, in March, when I got a post-card from a local breast cancer organization regarding a project of sending photos and/or stories about Mom. Of course, there was also the suggestion of a donation in mom’s name for the holiday. I got the same card again this spring, too. As far as I could tell, the moms to be honored need not be breast cancer patients, I think—but to be honest, I did not look too deep into it; I found it too disturbing. My quick scan of the website led me to a donations page, and another suggestion of donations in anyone’s honor for any holiday—including Father’s Day. I admit I was impressed by that—finally an acknowledgement that men can get breast cancer, however indirect that acknowledgement. Donating in honor of someone for a gift can be positive, if done wisely and so long the honoree’s charitable giving preferences are respected. But only a donation in honor of Mother’s Day warrants extra special attention, I see.

So it isn’t the money that is necessarily bothering me (too much) in this situation. Perhaps this post is me trying to put my finger on just what is bothering me about the fact I keep seeing the words: mom/mother and breast cancer together on one page so much lately.

There is a subtle whiff of marketing of course. I understand non-profits need to seize every opportunity to make money. It’s just, why the automatic leap that seems to go like this: mothers = women = women’s issues/health = breast cancer, so suddenly the holiday becomes all about breast cancer? Perhaps my view is too narrow here; I did not investigate organizations for ovarian or any other cancers, to see if there were campaigns to fundraise to honor one’s mother.

But it wasn’t just local breast cancer support organizations that seemed to link mothers to breast cancer for holiday festivities—local and national media linked the two as well. I opened the Sunday paper, and the magazine insert featured Christina Applegate and her mother, both famous breast cancer survivors. Why not feature them in October? Why not feature, I don’t know, a successful mother and daughter-owned business—as in, something women achieved rather than had to deal with? Or a mother and daughter both with any other cancer? I mean, any gynecological cancer would’ve been appropriate for Mother’s Day, right? Or are those diseases not common enough to suit everyone’s needs? Well, that argument doesn’t work—I’ve pointed out enough on this blog about how awareness advocates for diseases such as lung cancer and heart disease use breast cancer to point out how these diseases harm more women than breast cancer (Want Attention? Just Say Breast Cancer). So why no cover story of a mother and daughter team taking measures to prevent hereditary heart disease? As more intelligent women than I have long pointed out—why is breast cancer a stand-in for all women’s health?

I turned on the local news that night, and a woman who overcame a number of odds—widowhood, breast cancer—to return to school for her degree was featured. The cynic in me wondered if they started by looking for this news story by researching local “older” college graduates who were moms, or did they start at breast cancer support organizations to find her.

Is having breast cancer a prerequisite to be considered a mother worthy of honor? Is breast cancer the one and only threat to health and well-being of mothers all over? Is overcoming breast cancer the only achievement women can be publicly lauded for? Because that seems to be the message the media gave out that day, in my view.

Again, I cannot stress enough that I do not want to be insensitive here. Much is written about hereditary breast cancer—because breast cancer has that family link, even for this Cancer Curmudgeon, so it is natural for this mother-daughter + breast cancer topic to be written about. And most of the bloggers I read acknowledged the deaths caused by all hereditary cancers.

So maybe what is making me uncomfortable is this.

My mother’s mother had breast cancer at the very end of her life, over a decade ago. It went untreated because she was in the process of dying of heart disease. Then in 2010, my mother watched her youngest sister, that she cared for as if she were her own child, get breast cancer around age 50. A few months later her own, only child (yours truly), got breast cancer. My mother has had enough of breast cancer. I know there is no such thing as a trade off in the world of cancer (wrote about this a long time ago)—just because everyone around her has had breast cancer does not make her exempt. And that is what frustrates me so much. I was constantly barraged with subtle or direct messages over the past few weeks that seemed hell bent on making me understand something I am only too aware of: mothers get breast cancer. Breast cancer is a clear and constant threat to us, and we cannot ever get away from it.

My mother should be honored because she had to, and still has to, put up with my whiny, angry, annoying breast cancer patient self. Hell, my mother should be honored for putting up with the annoying person I was before breast cancer. So I honored her by shutting up about breast cancer all day on Sunday.

I’ve been tied up in knots about writing this post. I know that many women have had mothers and/or grandmothers die because of breast cancer and I do not mean to imply that their pain should be ignored—of course Mother’s Day is difficult. But it is also difficult for anyone whose mother is no longer alive for any reason; something a friend’s story reminded me of sadly last Sunday. I could not help but wonder if there were adult children out there, again resentful of breast cancer being shoved down throats on that day just as it is in October. I mean, it only stands to reason that this would happen, given the backlash to breast cancer that is happening in other cancer organization campaigns (Pancreatic Cancer Action PSA, anyone?).  Are other children perceiving a message that their own mother’s lives were somehow less significant because they had/have other cancers or challenges? And I very much resented the fact that a day meant to honor and celebrate, for me, was under a cloud of cancer, the same cloud I see nearly every damn day.

So I took one day off from cancer. And I want an end to ALL cancers. I’ll take that any day, it doesn’t need to be saved for a holiday.

 

Did You?

Did you smoke, and for how long?

Did you drink, how much, how often?

Did you have kids?

Did you use a tanning bed?

Did you even try to lose weight?

Did you take hormones or the Pill?

Did you eat enough blueberries?

Did you eat tomatoes?

Did you eat meat?

Did you buy organic?

Did you eat a lot of sugar?

Because if you have cancer, you did it to yourself.

Several days ago, Dr. Otis Brawley of the American Cancer Society wrote on some news site that most cancers are preventable and made bullet points of the usual laundry list of prevention measures. He did not say that everyone, or me personally, Curmudgeon Q. Cancer Patient, had brought cancer upon themselves/myself. But I still feel a zing when I read or hear this sort of thing. I am still trying to figure out why I get that zing.

Now, I know should avoid comments sections on mainstream news media sites. They cause me much stress—another cause of cancer, naturally. So why read them? Well, it does give a glimpse into how and what people think. Of course one person whose husband died from cancer protested the idea her husband brought it on himself, and another responded along the lines of: all these damn cancer patients are too sensitive, this article isn’t blaming them.

Ah there is the rub. Why are we sensitive? Well, because we get asked those questions I just listed at the start of this post, and more. A lot. Or at least I did. And yes, I brought some of the paranoia on myself, every time I looked at a magazine cover while waiting in line at the grocery store, each one touting some food I hate (fruits, including those cursed tomatoes) as a sure fire way to prevent cancer—and it usually says “prevent”, not “lower your risk”, at least on the cover, the story changes a bit on the pages inside.

Yes, I know, breast cancer patients are not blamed for their situation as much as lung cancer patients or people with heart disease. I just read another article about the latest mammography mess in which the journalist pondered how women think of heart disease as a result of bad behavior, while breast cancer is considered something bad that happens to women. I really have a hard time with this particular misperception that I see in articles more frequently than I’d like. Because from where I’m standing, when I got asked those questions, there was a flicker of a suggestion that this cancer did not just “happen”, but rather, I’d engaged in actions or non-actions that resulted in my getting cancer. I think that could be called blame.

I constantly see pieces linking smoking, and especially alcohol, to breast cancer. Yes I see it more than average folks because, you know, I had breast cancer, so I hone in on these items. But I am sure a few others are seeing it, and it is getting lodged at least in the subconscious. Well, OK, maybe not, given that most local breast cancer fundraisers in my small town are sponsored by bars and other businesses selling alcohol, and yes, alcohol is generally served, never mind all the chatter about alcohol causing breast cancer. Ugh, that is a post for another day.

It’s just that, for anyone to think most people, even on subconscious, unspoken levels, are not blaming the cancer patients, any cancer patients, for getting themselves into their fixes, it’s just…naïve. We must be blamed, we must endure those insulting “did you do this, did you not do that” questions. Some folks MUST blame us, because it is the only way they can assure themselves they’ll be safe from cancer. Anything they do that is different—eating, drinking, having kids—well, that is the get out of cancer free card, isn’t it? If only that were true.

What will it take to end the blame the patient game? Maybe cancer patients are too sensitive, but there is a reason. Too bad sensitivity isn’t transferable to others in need of it.

Your Mom’s Cancer is Not My Cancer

There are only a million things to say about Telling Knots’ recent Larry Flynt piece, and all the comments, and I may or may not write more about it. But I have to tackle a weird thing first.

One of the defending comments came from a Hustler Club employee, and in her defense of the event (perceived as offensive by many) she states that two female relatives had breast cancer, one of whom died. Kudos to Telling Knots for expressing sorrow right away in response. Not that I am not sorry for the woman’s loss, but my irritation at this disclosure is strong.

This is not the first time I’ve heard/seen this kind of “my (relative) died of breast cancer, and my (other relative) is a x number of years survivor of breast cancer” comment; it isn’t even the first time I’ve heard/seen it used by a person participating in or supporting an offensive type of “ta-ta” event as a reason why the speaker is doing it. What is this phrase supposed to achieve? That because she witnessed breast cancer she has special understanding of what it is like to have it, and all the issues surrounding it? And that this is somehow a rational argument as to why the event should not offend patients, simply because it does not offend patients she knows? Does this claim of having relatives with cancer give her some authority?

But then I think, cool it with the perpetual outrage Curmudgeon, perhaps she is trying to be empathetic, and most people don’t even try to do this. So am I bitching because I think it is the wrong kind of empathy?

It would be absurd to always be annoyed if one person speaks up on behalf of another. I think back to a post I wrote months ago, where I, as someone who chose a lumpectomy, pondered unfair judgment made of women who chose the so-called “unnecessary” mastectomy. I think back to a recent awful IRL incident: “Well he smoked for soooo long,” an acquaintance said of a person dying of lung cancer. “And, what, so he deserves this then?!” I sputtered back angrily. Perhaps I was out of line to speak up; certainly I was, ah, a bit aggressive. I know I cannot speak for lung cancer patients, but it seemed wrong, in that moment, not to point out how awful it is (and always will be) to blame the patient, any patient, or to imply anyone deserves cancer. I remember once hearing an anecdote about an ovarian cancer patient wanting breast cancer patients to speak out for ovarian cancer patients, because there are so many more breast cancer survivors, given that ovarian cancer patients have a lower survival rate (and yes lower incidence rate as well…but that does NOT make the cancer less important—read this). What a horribly practical view on the part of the ovarian cancer patient, and totally understandable. So then I think, yeah, there is a need to speak up for one another, but not always to speak for one another, if that makes any kind of sense.

But on the flip side, none of us experience cancer, or even breast cancer the same way. Sure, many of us have lots in common, and that is how bonds are formed and so on, but there are differences. Heck, there are a great many breast cancer patients who have no qualms with Flynt’s event, or other slogans, events, and organizations I find so extremely offensive. Just because I’m offended, doesn’t make me right, I keep whispering to myself, unsuccessfully, because I can get a little self-righteous on that topic. I cannot speak for them and they damn well can’t speak for me. In fact, I am pretty certain most readers are not going to agree with my irritation here.

For me, “my (relative) had (some kind of) cancer” is going to have to go into my list of things I don’t want to hear as a cancer patient. I just think, if I went around saying I understood all about any kind of cancer because I know a few people with other cancers, it would be utterly ridiculous. As if other cancer patients did not already feel marginalized enough by the Big Pink October machine! Me, with breast cancer, the most well-know, probably the most funded and researched cancer, might as well just use the insulting phrase, “well, some of my best friends are (whatever type of cancer patients)”. As if I had some special insight into the issues or problems people with other diseases face; puhleeze, snort of derision. I can’t speak for people with other kinds of cancer, or other breast cancer patients, hell, I can barely speak for my own self!

Look, all I know is that however unfair I’m being, when I hear someone say “my relative had/has breast cancer”, all I want to say is, “that doesn’t mean you know or understand ME, or all the bullshit baggage I bring to my own personal case of cancer. I don’t have cancer the same way your relatives have it.”

That baggage we all bring to our cases of cancer is a topic for another day. But in the meantime…am I being unfair to those who drag out a faux cancer card, the “my relative has cancer” card for whatever reason?

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.

Addendum to It’s Not a Trade Off—Better Me Than You

See, what I withheld from the It’s Not a Trade Off post (a few days ago) is that my own mother, who was my primary caregiver during cancer, went for her annual with her general practitioner. And he found a lump near her stomach so she had to have a CAT scan and we are still waiting for the results…for the holiday. With a sister and a daughter having just gone through Stage III cancer each, and one with a recurrence, the odds are not in Mom’s favor. The fact that I’ve had cancer does not give her the free pass, it only seems to increase the likelihood that the news will be bad.

So you see, this is why I have no patience for the “glad I had it rather than my loved ones” It doesn’t work.

Yes, I realize I am jumping ahead and creating worry that may not be warranted. But life taught me to expect the worst, well before diagnoses. Cancer caught me off guard once. Never again.

Ramblings On That Word Awareness

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

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

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

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