Tag: breast cancer

Smiles to Smirks

Couple of weeks ago there was that little stupid news tidbit that some guy created a mirror that only shows your reflection if you smile while looking at it. There were a few “forcing cancer patients to smile” type of clickbait headlines, and I admit, I fell right into it. Now that I’ve taken a step back from the heat of the moment—I wish to ponder, as I so often do.

My smiles turn to smirks or something. Oh and yeah, flipping people off too!!

Yeah, “forcing” was a bit over the top. While making a mirror that only works if you smile at it is kind of “forcing”—it ain’t like there aren’t other mirrors to use. This was pointed out in the furor of comments on the mainly derisive think pieces written about it.

Oh no, I’m not giving the guy who created the mirror a free pass—Hell no! I still think he was wrong-headed even though he had indeed taken inspiration from an ACTUAL CANCER patient. (Just one as far as I can tell.)

I’ve used the “if you don’t like it don’t use it” argument myself. Don’t like a TV show, think it shows the degradation of our culture—change the channel! Ain’t nobody forcing you to watch racy things you disapprove of! I admit I had a harder time a few years ago when Needless Markup, whoops, I mean Neiman Marcus, was selling collard greens at a ridiculous high price for the holidays. Sure, it didn’t matter really—I can make my own Hoppin’ John and collard greens, I’m good at it if you must know. But there was something, I don’t know, “icky” about some fancy Big City company charging a high price for poor people food. (Anyone asks for my recipes, I kill ‘em, just so we clear, OK? #RedneckLife4ever.)

But hey, no one FORCING me to look into that mirror, I get it. The “you can change the channel/turn off TV/not buy overpriced White Trash food” argument can be used against me. So why does this mirror—that I don’t have to buy, and will likely never see, bother me?

Hahaha, anyone reading my blogs for a few years knows, I ain’t got an answer or solution or anything!

So why bother, why get into a lather?

I don’t know. I don’t want to invoke the slippery slope clause here. But it does make me wonder, why on earth did the developer think this was a good idea? Given the number of derisive articles and snarky tweets I saw, I think if he’d done a little research, maybe he would not have moved forward with his idea. But I don’t know. I mean, it IS true, if one smiles, it releases endorphins that make one happy. But I don’t wanna smile, I don’t wanna “fake it ‘til I make it in CancerLand”. Bottom line, why should I?

I think I got annoyed because for me, it reinforced the idea that just won’t die: “cancer patients need a push to be cheerful and all will be well.” It’s like it just never occurs to people to just ask us what we think, and to listen to us. Just listen. Not judge. Not comment. Not “do something” to cheer us up—because I still think that only benefits the people around us—not us, actually.

In other words, I’m not sure this was to benefit cancer patients, so much as it was a ploy to make everyone comfortable about cancer. And we all know I hate that!

So what about those that questioned why this mirror encountered such a backlash? What about those who thought, just don’t use the mirror?

I can never make them understand. People who only understand things once they actually experience them—ugh, that is a subject for a future post, I don’t wanna go there today. I can only comment this:

A culture that we occupy, in which an art/architect student thinks a mirror like this is a “good idea”, we have miles ago in our quest to make others understand so very much about cancer.

So in short, this mirror made me tired, like everything else that happens in CancerLand. Why do we have so far to go?

Annual Summer Blog Challenge Accepted

I’m a little late to the party but still want to participate in Nancy’s Point’s Summer Blogging Challenge!

See my participation answers for 2015 and 2016:

OK, here we go, answers to Nancy’s questions:

  1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

I went for my first ever mammogram in August of 2010. My maternal aunt had just been diagnosed with Stage 3 breast cancer. Her mother (my maternal grandmother) and aunt had had breast cancer as well. My grandmother was diagnosed with it as she was dying of heart disease, so was never treated for her cancer. Given that both my aunt and mother are on medications for blood pressure and heart issues, I always thought that was my bigger risk.

At any rate, that first mammogram received an “all clear” letter. A few weeks later I noticed my left nipple inverting. After a day of going to my new gynecologist (since the one who’d ordered the mammogram had suddenly left her position), and subjecting myself to numerous tests, well….turns out I wasn’t really “all clear”. On October 25, 2010 I learned via phone call I had breast cancer. An MRI ultimately proved it was about 5x6cm, biopsy proved it to be estrogen and progestogen negative, and HER2 positive.

I turned 39 years old on October 29, 2010. Starting in November had chemo, then surgery, then radiation (along with Herceptin infusions, simultaneously). I finished treatment in January 2010. I quit my 60+ hour a week main job to focus on my side hustle, and control my work load. I was exhausted

2.What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

Someone told me just to “cut them off”. Ultimately I didn’t do that, I opted for lumpectomy. I’d often thought that about breast cancer patients before my own diagnosis. I found it harder to do when faced with the reality of it.

3.What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

The sheer unwillingness of most people to understand and/or accept how complex cancer is. It’s not even the fact that people DON’T understand there are several types of breast cancer, not to mention the thousands of other kinds of cancers—it’s the fact they seem to glaze over or look at me like I’m lying when I try to explain E/P negative & HER2 positive. I remember being SHOCKED being in a room of about a dozen other women who had breast cancer, and when I introduced myself and stated my stage and kind of cancer, they had no idea what I was talking about! The nurse leading the seminar had to explain the different kinds of breast cancer. After that I pretty much gave up on local support groups—too uneducated and UNWILLING to learn.

4.What is something you want others to know specifically about breast cancer?

See above. And also, that it is a slog.  A marathon not a sprint. It takes a year or so for treatment and then more time to recover from treatment. It ain’t the damn flu.

5.If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

Always. I especially worry when I feel run down or “off”, like I have been lately. It gets hard to remind myself I’m probably just exhausted because of other stuff in life.

6.Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

NOOOOOOO! It DID, however, release my inner Curmudgeon. Which is fine.

7.What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)

The Emperor of All Maladies:  A Biography of Cancer, by Siddhartha Mukherjee. Haven’t read many others. I listen to books more than reading these days. #dogwalkerlife

8.Besides your family, where do you turn for emotional support?

Online support more than anything. After all this time blogging, I’ve found my “tribe” of like-minded cancer patients, former and otherwise. A relief.

9.How many cancer blogs do you read and why do you read them?

I don’t know—less than I would like, and less frequently these days. Because I’ve turned to political activism lately, I lack the spoons I’ve had to be as involved in online cancer communities. I hope to return soon.

10.Do you call yourself an advocate? If so, what drives you?

I have a fraught relationship with the idea of calling myself an advocate. I see the work of folks at METUP and how many political and other ties people like that have, and I’m just like, yeah, I can’t do that. I write my blog, I fuss and throw a fit, I muddle along. I accepted the mantle finally last year when I helped bring the #breastcancerrealitycheck tweet storm to fruition. Yes, we’ll do it again this year—working on it now. Also, participating in my local Indivisible showed me how much I learned as a cancer “advocate”, so I realized that yeah, I am an advocate. Ha ha, those cancer lessons—always the crazy stuff with me. Never touchy-feely crap like “life is short, love everyone”. For me always scratchy-bleedy. Just the way I like it.

What drives me? Oh, nothing short of a complete overhaul of the way society thinks about cancer. That’s all, nothing much.  HA!

OK, that is some stuff about me in a nutshell. Hope to back soon with more blogs describing the musings of this cranky-pants cancer patient.

 

When Nirvana Went Number One

This post has taken me nearly 3 years to write. I kept starting and stopping because it is personal and about a difficult time I did not wish to revisit. I did write a couple of posts about that space of a week in 2014, when I was called back for additional screening, to be “sure” about a “suspicious area” on a mammogram that might have indicated recurrence. I wrote about my annoyance with the word “hope” (I still don’t really like the word) in Complicated Relationship With Hope, and about the outcome of that MRI (no cancer recurrence!) in Scar Tissue. I meant to publish this last September during the 25th anniversary of the release of Nirvana’s “Nevermind”, but the #BreastCancerRealityCheck event (hopefully the first annual) took my attention. So, instead I celebrate the 25th anniversary of that seminal album going to Number 1 on the charts, and it actually might make more sense.

For those unfamiliar with this blog and my details, here is the Cliff Notes version: I had my first ever mammogram at age 38 in the summer of 2010 because my 48 year old maternal aunt had just been diagnosed with stage 3 breast cancer, and her mother had been diagnosed, but not treated, as she was dying of heart disease several years before. Whether all that family history was not communicated to the person reading my mammogram, or WAS communicated and ignored, I guess I’ll never know. At any rate, he dismissed the large area of white present only in the image of my left breast as “density”, though I did not find that out until later–this was before all the legislation about informing women about their densities. I was sent a letter saying there was no evidence of cancer; 5 weeks later my left nipple inverted. Much scrambling to various doctors and all those different scans (ultrasound, MRI, PET, CAT) later, I was diagnosed with Stage 3 (spread to lymph nodes), E/P negative, HER2 positive cancer. This was on October 25, 2010, just a few days before I turned 39. Chemo, surgery, radiation and a year’s worth of Herceptin, I was finished January 2012. In 2014 I had to switch insurance, causing me to switch to a different oncologist, different hospital system, different place to get imaging. I’d had 3 or 4 MRIs during diagnosis and treatment, and this one went a little differently.

When I went to this new imaging place in 2014, I was armed with discs of all my many mammograms and MRIs, and I told them directly about that first missed diagnosis. I’m upfront about my lack of trust these days. So that might be why the doctor looking at my mammogram called me back to view the images, to tell me he wanted more images in the form of an MRI. I remember sliding down the wall when he told me this, like some damn over-emoting actress in a TV movie. At that moment I understood why those cheesy movies always included that scene; I suddenly knew the feeling of my legs just failing to work.

The week that followed while I waited for the day of my MRI I do not really remember. I just curled in a ball most of the time. The day of the MRI arrived and as I entered the room, before they put me in that machine, the tech asked me if I would like to hear any music while the test took place. I was stunned. You see, I often heard others, my aunt included, talk about having some atmospheric type music played while having MRIs–you know, the calming stuff I imagined to be similar to stuff that plays during a massage

So when she asked if I wanted music, I laughed mirthlessly and requested Nirvana, expecting the answer to be “no we only have…” and a list of some boring, supposedly calming Enya-style shit. But instead, she said, “yeah I think I have Nevermind”. And so I listened to that landmark record during one of the worst hours of my life.

 Let me back up and explain a few things.  I was a teen in the 80s, and loving the not-ready-for-radio stuff while living in a rural area was tough. There was no college rock station within range. All I had was MTV’S “120 Minutes” and a local rock radio station playing “alternative” (before that was a thing) from 10PM to Midnight on Wednesdays. So when Nirvana changed the music landscape in September 1991 and the grunge/alt-rock gold rush began, better stuff was suddenly on the radio. Why does that matter? At the risk of sounding like a grandpa bitching about the 5 mile walk to school in the snow uphill both ways, there was no Internet and downloading or streaming music back then–no social media to hear about new bands. Adding injury to insult, I was broke, working my way through my 3rd year of college in the fall of ‘91, I had a crappy car with a busted tape deck, so radio was all I had. When Nirvana pulled down that wall, music I liked was finally on my radio and my drives to class and work were less awful. Finally, the music I liked was accessible! Lots of people howled when the underground went mainstream–certain bands weren’t the cool little secret anymore. I get it, I myself still cringe and mutter “sell out” when I hear old songs I love in TV commercials, for a second, then I don’t mind it.

After I was ensconced in the MRI machine, the tech shuffled around, telling me her son had left her a bunch of his old CDs. I could not help but wonder–and I wonder still–about the odds of this happening, and how much slimmer the odds would’ve been if Nirvana had not become multi-platinum, radio-friendly unit shifters. Nirvana’s “Nevermind” was THE CD to own back in the day. How old was the tech’s son? Was he one of those kids that got Michael Jackson’s record for Christmas and exchanged it for “Nevermind”, thus dethroning that 80s superstar—as the old joke went back then? And then what happened–like me, he left his physical CDs behind due for our current download or streaming lifestyle? And whatever possessed his mother to bring “Nevermind”–a record which is a pretty far throw from some kind of Enya crap meant to soothe the nerves of cancer patients–to an imaging facility?

That day in March of 2014, it had already been announced Nirvana would be inducted to the Rock and Roll Hall of Fame–something I was pleased about–vindicated again that these scruffy small-town weirdos had knocked away the canned pop and hair metal bands. Spring 2014 saw lots of articles about Nirvana, lots of stomach-churning pieces about the 20th anniversary of Cobain’s suicide in the media. Meanwhile, my small world was shattering because I did NOT want to face cancer again–whether it was a metastasis or not. I wept silently while keeping still–NEVER move during an MRI–out of a stupid self-pity, and maybe a little for dead rock stars, which is equally stupid. I remember not crying when Cobain killed himself, I considered myself too old for that. Typical rock star story, I thought then. I’m a little less rigid now, and allow myself the tears. I still think it a typical rock icon story, and ultimately have little patience for Cobain or even Layne Staley of Alice in Chains. Great musicians, but I cannot forgive them their choices no matter how much I admire their talent. Yeah yeah, drug addiction is an illness, as is depression. I have that ever-present worry that most cancer patients share—the one in which we know it can come back even 15 years later—which causes me to always have that little fear inside that I may never reach 60, or even 50 years old. It may seem immature, but my desire to live and never have cancer again keeps me angry at rock musicians who throw their lives away. Having empathy and understanding of the nature of their diseases is even more difficult for me now, when I am supposed to be older and wiser. Hey, as I’m fond of noting, I seemed to only learn UNacceptable cancer lessons, and my favorite is my new view that patience is overrated. So I will not apologize for my impatience on this issue.

nirvana_band_logo
source:bandlogos.wordpress.com

In his 2014 book “Here We Are Now: The Lasting Impact of Kurt Cobain”, Charles Cross says, “The question of any performer’s impact is ultimately a personal one. If you were touched or moved in any way by Kurt Cobain, whatever drew you in is the key to what that legacy means to you now.” I read this book not long after that MRI. But is it really whatever drew me in back then still representative of the legacy for me now? Not so sure. Back in the early 90s, I had no way of knowing that I’d reach for those seminal Nirvana songs again in my middle age because I got cancer. And for sure, the songs still resonate with me, but mean something quite different. Certainly not what Cobain meant by them, and again, I don’t care.

So no, the legacy of Nirvana changed for me a bit, although I get what Cross meant in his book. There are things I hang onto in the darkest moments, like re-watching a certain movie or re-reading a favorite book when nothing else is doing the trick to distract me from the fear of my situation. These things are like comfort food, or a security blanket. It had not occurred to me during my 15 months of treatment to rely on favorite albums. Maybe I didn’t want to make an unpleasant association, like what happened with certain foods I ate during treatment. Luckily, that 2014 MRI was clear, I was and am still NED (no evidence of disease), so no awful association of cancer=Nirvana songs was created.

But I still think about listening to “Nevermind” during that MRI. Didn’t even get through the whole album (which is great, usually MRIs take for-fucking-ever). This hasn’t lessened my enjoyment of the record, and I’m still able to recall my 90s self more than my 2014 self when listening. (We love the music of our younger days because it calls to mind…our younger days, duh!) But the record is just a little different for me now. A odd dimension I cannot quite define has been added. Is it joy, because I should associate listening to the album during a test that ultimately brought me good news? Not exactly–the ever-present worry is still there (sure, I dodged the bullet that time, but what about the next oncologist visit/mammogram, and the next, and the one after that….).

I think I’m OK with “Nevermind” functioning as a security blanket against my cancer fears. It’s just something I never imagined happening. But it is no longer the record of my 20-something, what’s-with-all-those-angry-Gen Xers era, no, not anymore. I’ll always be aware of the music/pop culture significance of the record, but it turned into something both darker and lighter for me in 2014.

How Did I Get Here?

This is gonna sound weird coming from someone who 1) is writing a blog about breast cancer and 2) is usually engaged with breast cancer social media users for a good portion of every day. But here goes: sometimes I forget how it is or why it is I came to be so involved. Do you see what I’m saying? I am simultaneously ultra-aware I had breast cancer but get caught up in criticizing Pink culture that when I stop and go to a doctor appointment, I still get that twinge: “How did I get here?” Then I hear the Talking Heads song (Once In a Lifetime) and visualize David Byrne in that damn big suit. “How did I get here,” he infamously asked.

Yes, it is ridiculous that I am still a bit shocked I had cancer. But sometimes I am. It is insane that at age 44, I gathered all my cancer records in my cancer binder and headed out as if it’s all old hat. Well, it IS old hat for me. Need I say it shouldn’t be old hat–not for anyone, not for people under the “average” age? Why the hell should there even BE an average age? Nothing…NOTHING average about the cancer experience–it really is just too strange and unexpected, and wrong.

I admit I get tired of it, of having had cancer and being in CancerLand. Yeah, yeah I know–this is when people could say to me, “then stop blogging, walk away, you’re basically done.” But I know better. I know my risk. And walking away won’t change the fact I still have to see Dr. Onco again a year from today. Pretending doesn’t change anything. Ignoring doesn’t change anything. And I would never be OK with myself for not at least trying to make this hideous experience a little less hideous for the patients diagnosed today, who will go into a sort of shock, who will turn up their nose at the status quo of pinkwashing.

So I do what I do, for better or worse.

20160922_154803-2I take a time out for this martini. Then back to trying to tell it like I see it: that pink drenched crap you see in the fluffy ads and in the stores? Yeah, it ain’t like that AT ALL.

My Oncologist Can Beat Up Your Oncologist – The Disease Olympics Part 3

Conclusion, see Part 1, Part 2.

So this is what happened early 2013 or late 2012, can’t remember exactly. Point is, it was a long time ago, when I was still in my post-treatment, semi-depressed, white-hot angry about cancer culture phase, and was new to cancer social media. I’m admitting here I’ve held onto this negativity. Continue reading “My Oncologist Can Beat Up Your Oncologist – The Disease Olympics Part 3”

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.

 

 

 

Institutional Knowledge

I’ve been trying to put my finger on the word or phrase to describe the accumulation of common, shared knowledge that comes to a cancer patient participating in one or more social media platforms. I hesitate to use “institutional” when it comes to breast cancer, because it implies the normalcy, the rite-of-passage vibe that surrounds breast cancer, and I hate that—I do not want breast cancer to be thought of as “normal”, as just another step in a woman’s life. It should not be a step for anyone. But institutional knowledge seems the best fit.

Continue reading “Institutional Knowledge”

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?

“I Know It When I See It”

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

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

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

Disconnected. Slog. Resentful.

This October I feel more disconnected than ever from the Pink noise. And yet, I feel more burning resentment than ever, too.

Before I got online this morning and saw all the posts about submitting 3 words to GMA for some Pink crap they are doing, I was already thinking about how the words and phrases about to fill all media are so damn meaningless (just like I thought this last year: Some Word Problems). I saw silly grocery bag (pictured below) with the ribbon and the words “inspire hope”, and all I could think was, “what does that even mean?” I snapped this picture while I was waiting in the checkout line, and naturally my gaze fell onto the People magazine with Jackie Collins on the cover—barf (I am sorry she died, but completely disagree with her views and am so jaded about ALL celebrity cancer stories that I just always want to barf when I hear of them).

What do these words mean? What have they to do with my every day slog?
What do these words mean? What have they to do with my every day slog?

I am so tired of all the slogans surrounding cancer, and even all illnesses. They are so disconnected with the everyday slog that is the very nuts and bolts of treatment. This is why I’ve been especially touchy this year about the showy symbolic activities, such as wearing a bald cap, for “support”. How does this bald cap, or taking off a bra, and then maybe hanging it on a mailbox, do anything for that every day, minute to minute, nitty gritty, SHIT that is treatment?

I don’t write often about my primary client; I take care not only of her pets (since, technically I am a pet sitter), but also I am a secondary caregiver (her husband is the primary) for her Chronic Lyme treatment. First of all, hers is not my story to tell exactly, and secondly, there is so much controversy surrounding Lyme and I am unwilling to wade into it. Chronic Lyme patients will read this and know the everyday slog of which I speak: the IV treatment regime, the schedules, the horrific side effects. Cancer patients will know some of it, and can take an educated guess about the rest.

This is only the tip of the iceberg in describing my daily life. I won’t go into the scary dark places: the reminders of my own experience as the receiver of caregiving, the horribleness of side effects. Just know that the past few months have been especially difficult. I’ve been super busy and often so tired when I finally sit down to my laptop that I can barely read the many posts by my favorite bloggers (my saved links on Facebook and bookmarked web pages to read later “when I have a minute” are now out of control).

When I see “inspiring” slogans on t-shirts and what-not, and smiling crowds in races or on idiot morning TV shows, with those little clips detailing the same old story, I just think—is this the real life? No, it is not.

Patients face disease and treatment alone, ultimately. Yes, good people do lend real support—not the fake, symbolic kind exhibited by head shaving, but real stuff like listening, holding, cooking, cleaning, etc. But no one can experience the nausea, the constipation, the diarrhea, the exhaustion, the FEAR, and so on, for the patient. And people holding up signs in a video clip don’t help me when I have a relapse of cancer panic, or when I nervously, fearfully, watch my client to make sure she stays awake long enough to not choke on her food.

THAT is my everyday slog. How can I help but feel resentment when I see all this we-are-fam-i-ly sign-holding, waving, smiling, on TV? I did not go into warrior mode and kick cancer’s ass while I was in treatment. I slogged it out taking each day as it came. I do the same now. Lyme’s ass is not being kicked; we’re just taking one day at a time, slogging it out, doing the best we can and working toward better days. Cheering crowds make me feel so disconnected with the realities of illness and treatment.

That is what illness, cancer and Lyme, are to me: a SLOG. And the celebrations about to ramp up for Pinktober make me feel DISCONNECTED and RESENTFUL.

And those are my 3 words—but they won’t be the last words I speak.