A Cautionary Awareness Tale

On October 31, as I distracted myself with Halloween’s glory, I asked myself: “what do we become aware of this month?” Lots of Facebook posts ask that question, I asked it on Twitter I think. So much sound and fury in October, but does anyone learn anything? I think not.

I forced myself to remember the days before diagnosis. I know I never thought all the pink rah rah crap was great–that’s just a core trait of my personality. But what did I know about breast cancer, and the awareness push, before diagnoses?

This is a tough question to answer. I’m not sure I fully know the answer. I know I absorbed the “early diagnosis/screening” messages. I knew enough to ask for a mammogram earlier that the suggested age (40 at that time), but I still regarded breast cancer, any cancer, as an older person’s disease despite knowing actual patients my age. I asked for a mammogram because I knew I had a higher risk with family history-my aunt had just been diagnosed for heaven’s sake. I knew about ribbons, especially red ribbons (AIDS) and pink ribbons. Did I know October was “awareness” month? Maybe–but it did not “click” with me until the late 00’s.

The incident that made it click with me–well, I’d buried it. I was working in for a non-profit arts organization. Doing film exhibition with local community organizations. In the summer of 2008 or 2009 I began working with a women’s business group. My point collaboration person was suggesting topics for me to find films for our October event. I remember her telling me October was Breast Cancer Awareness Month.

I remember being surprised by that–what a dumb month for such a thing! Let me explain. As a lifelong resident of a beach town/resort area, with my first post-college job being in retail, I had a list of hard and fast rules and truths. Painting October Pink was stupid in my mind. Lots of local “runs” took place in April/May/June anyway–wasn’t spring better for Pink? I’ve lived my life by the ebb and flow of tourist traffic. Panel season, or off-season, events were in a strict path. There was the Greyhound rescue dog weekend, Jazzfest weekend, Seawitch, etc. in October. Where I worked, the annual film festival was the second weekend of November. I had no time for anything else–October was full of deadlines in preparation for this main event–a time of no sleep, no fun, no nothing. I measured these things in amounts of car traffic (for my work travel) and the likelihood of whether I could schedule an event and get any butts in seats during those event weekends (likely not). BCAM had maybe a marathon in one beach town–but there was always a marathon each weekend (bikes the worst, as they interrupted traffic the most, adding to my work travel time). I had no time for breast cancer, awareness, or a month of it . But sure, if I could find cheap film to exhibit about it, I’d see what I could do (this was before the release of Pink Ribbons, Inc.).

I don’t remember what films I exhibited–none about cancer I’m relatively certain. I moved on, forgot about this, got cancer, and now I remember it.

But here is the other thing I’d submerged, and am just now dredging up–a sort of painful memory.

I skipped the main event in 2010, having just been diagnosed, and preparing for the Red Devil. In 2011, I returned, managing over 1,000 volunteers for the annual festival, among other things. I had completed chemo in January of that year, radiation in the summer. I was still doing Herceptin every 3 weeks and my hair was curly and short–just returning. I was exhausted and felt horrible. I ran into the women I’d coordinated with for that event of a few years prior. She laughed and asked why I’d cut my hair so short (I’ve always worn it long). “I had cancer,” I replied curtly. She laughed for half a second then sobered up when she saw I was NOT laughing. “Breast cancer?” she asked. “Yeah,” I grunted.

So here was this person, so into “The Cause” but what did she really know about breast cancer? Breast cancer was a thing to worry about–but a thing that happened to other people–not ones we knew, not ourselves. Breast cancer was a thing to promote because an audience “cared” about it. But not “real”.

I realize now how much this informed my view of BCAM–this ignorance. It’s something to care about, to SHOW care about, but it always happens to someone else.

Until.

This is likely part of my disconnect with such hollow shows of “solidarity” of “Support”. Those things are meaningless to me.  The Pink events–they have little to do with What Really Happens.

I hold no ill will toward this woman–how could I? I was just as ignorant, just as “that won’t happen to me.” I don’t even remember her name, or the organization, and don’t feel motivated to research it. It doesn’t matter. It was just a memory that popped up Monday, unwanted, as I tried to get ready for tricks or treats.

My point is: October and BCAM, those are just “things to do”, the way we do other “holiday” things: buy candy for trick or treaters, buy a turkey and fret about ignorant relatives, succumb to shopping holiday madness, and make the obligatory weight loss New Year’s resolution.

And that is what I hate about October as Breast Cancer Awareness Month: it has become a rote obligatory motion we go through–not real.  Except to those of us who had the dumb fortune to get breast cancer.

And this is what needs to change.

 

Thank YOU!!

You did it! Now 100 of us have signed up for the Thunderclap on Oct 1! Now we know our social media message will be sent out at 7am PDT/10am EDT/3pm BST. Thanks to everyone who signed up and shared our tweets, posts, and blog messages, urging your friends to join in to inject some reality into the same old tired pink narrative this Breast Cancer Awareness Month!

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We still have much to do, of course. Keep urging others to sign up–the more tweets that go out at that moment on Saturday will only make our voices louder–and HEARD! Not only that, but continue to tweet out as many realities of your experience ALL DAY on Saturday. I know, I know. It is so much easier to just nod when someone says something irritating and clueless–because they have not had cancer and just don’t know. Well, rather than rolling our eyes and shrugging–let’s clue them in! Affect some change!

But right now, I’m taking a moment to breathe, to revel in my gratitude to all of you, for joining us on this crazy quest to try and start changing the narrative just a little. It’s true, I am a Curmudgeon–that will never change. But I am gleeful that so many of us share this load–and are willing to shout it out!

I can never thank you all enough!

X-Rays and Candy

Yesterday I was doing something uncharacteristically indulgent—getting my hair colored, trimmed, and styled, when I overheard another client and stylist discussing the dangers of trick or treating, you know, the old razors in apples thing. They spoke of that myth as the gospel truth, as the reason they were taking their kids to some trunk and treat thing (I did not know what that was—had to look it up!).

I am always surprised at how those myths persist—heck, they began in the pre-internet age—which really says something about how people latch onto things, and don’t let go. I remember the razors in apples thing growing up, I remember local hospitals offering to x-ray candy every year. Does that still happen?

I was chomping at the bit to intrude on their conversation, but, alas, I was in the hair drying/styling portion of my salon day—so I only caught bits of the ongoing conversation, and there was no way I was going to yell over the sound of hot hair aimed at my head loudly at high speed. It’s funny, earlier this year, I wrote about struggling with the notion of jumping onto every little lapse when I hear cancer myths—worried I will become that tiresome “cancer woman” among people I know (probably already am to some degree). But when Halloween BS gets tossed around, whew, I was VERY ready to rain knowledge and truth on uninformed heads!

Forced into zipping my lips, I got contemplative about how myths persist. I mean, I know the jokes about not believing everything you see on the internet—of course you cannot! But on the other hand, not believing everything you read and hear (rumors?) is a long, grand tradition, isn’t it? (Uh-oh, having a childhood flashback to the rumor about the Mikey kid eating pop rocks and soda—anyone remember that?) And combating rumors with truth happens on the internet too, in addition to the creation of BS. So, how is it that so many people still buy into the urban legends about razors and apples? That has been debunked, I thought!

I wish I knew how to end these illusions, because that talent would sure come in handy in CancerLand.

We hang onto falsehoods, slogans, any number of ideas out of….what? Tradition? Habit? Pick any breast cancer sound bite: 1 in 8 (when that stat is bit more nuanced when looking at age brackets), early detection saves lives, sugar feeds cancer, a positive outlook helps kick cancer ass, run for cures—oh, why go on. I’ve been struggling with a few myths I hang onto myself—but at least I am questioning everything.

Maybe that is the key—the willingness to question anything one hears or reads. An open mind.

October is wrapping up and I find myself in a foul mood tonight. Watching nonsense online, people hanging onto untruths, just being unwilling to hear any challenges to what is perceived as facts, I’m just bummed out. Between Halloween myths and breast cancer BS, I’m just drowning in mass delusions.

I’ve been blogging and reading blogs for nearly 3 years, and I’ve been in CancerLand for nearly five, and I keep thinking: Still?! Still, with this rah rah pink crap, no progression?! How can that be? We have to keep fighting nonsense every year?

But the answer to that question was right in front of me yesterday, listening to 2 people talk about a lie, a decades old myth, like it was real.

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.

TV Invaded My Escape Plan

My secret to getting away from Pinktober madness is music, of course. The Rock and Roll Hall of Fame nominations come out each October and I’m usually able to use those as a nice distraction. This year, there is the added bonus of the “Foo Fighters Sonic Highways” documentary series on HBO. I thank my lucky stars for Dave Grohl.

The series (and creator) was featured on Sunday’s “60 Minutes”, a show I generally do not watch. While waiting for the Grohl-interviewed-by-Cooper segment, I endured a piece about genetically manipulating embryos, in order to have a baby that does not have any faulty, disease-causing genes.

I’m not going to go into the “playing god” aspect, I’ll leave that to internet comments: “if your mother had done that, you would not have been born” arguments that rage around this topic. Not having ever desired kids, I’m a bit dim on this subject. But the woman featured in the segment decided to take this path after getting breast cancer at age 29, and yes she has the BRCA mutation. Of course that gene is one she sought to eradicate. The interviewer asked her if her goal was, “breast cancer ends with me” and the woman said “yes”.

Look, I understand that BRCA is a big issue in breast cancer discussions. But it is possible to get breast cancer without being BRCA positive—I’m one such patient. In fact, from my rather weak grasp of breast cancer science, it is my understanding that BRCA is not present in most breast cancer patients. So how can this woman be so certain that she has eliminated the chances of her progeny ever getting breast cancer? Not sure breast cancer has ended with her for her descendants.

Perhaps I am wrong to be annoyed, to think that this is irresponsible journalism? Generally, I do not watch these types of magazine TV shows. While I gather that something like “60 Minutes” is a bit more reputable than the morning entertainment & lies shows, I still do not think they are a reliable source of medical info. Sadly, most of the public think things like “60 Minutes” are perfectly reliable. Did the show spread more misinformation (I am vaguely aware there was a false reporting or something scandal with them earlier this year)?

I am so tired of these sort of “winning the fight against breast cancer, kicked cancer’s ass” type of statements: breast cancer ends with me. Do we really have as much control as we’d like to think?

Argh—I just wanted to watch something about one of my favorite bands, about a cool project that has kept me entertained, educated, and distracted this Pink season. Can I not get one moment’s respite from breast cancer bullshit?

As Close As It Gets

As I’ve said before, I’ve never written that one post that lists all the things that I dislike about Pink, and all the Breast Cancer Awareness Month crap, and the many things I find wrong with the cancer patient experience/role we are expected to fill. It’s too overwhelming, so I just write posts about bits and pieces, one at a time. Many others have written excellent articles, posts, and books on the topic–I’d rather just let those do the talking for me. But none have come as close, so accurately and comprehensively as this Washington Post article.

I survived breast cancer, but I hate breast cancer awareness month.