nirvana – anotheronewiththecancer

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 25^th anniversary of the release of Nirvana’s “Nevermind”, but the #BreastCancerRealityCheck event (hopefully the first annual) took my attention. So, instead I celebrate the 25^th 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.

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.

This Is So NOT My Fight Song

“Rap music is really good when you’re traumatized” –Kim Gordon, formerly of Sonic Youth, author of “Girl In A Band”

I begin this post with an apology of sorts. I am not trying to make fun of or otherwise criticize anyone’s music preferences. I’ve been on the receiving end of that and know what it is like. But at the same time, I care very passionately about music, as a simple poke around this blog will show. I mean, hello, I got the Red Hot Chili Peppers’ band logo as a tattoo instead of nipple reconstruction (see page)! So, my preferences are going to come out. And so will my dislikes—which is putting it mildly.

Continue reading “This Is So NOT My Fight Song”

5 AM

When people go on about “gifts” from cancer, I roll my eyes. More like curses, I think. One such curse is some occasional insomnia for me. You know, that wake up at 3 in the morning thing. Start worrying about stuff, mostly cancer, and cannot get back to sleep. This happened to me this morning. I did the one thing you’re not supposed to do–got out my phone and started goofing around, which pretty much guarantees I won’t get back to sleep.

So I got up at 5 AM, turned on the TV to see if I could find a nice boring infomercial that would lull me back to sleep. Instead I found delight: Foo Fighters on “Austin City Limits” on PBS!!

Let me back up a little bit. I knew the Foos were going to be on ACL, and knew that it was supposed to broadcast on PBS on Feb 7. PBS always gives a date and a time for programs with the note to check local listings. I LOVE living in Maryland, except for the state’s PBS station, MPT. MPT NEVER complies with the times/days PBS advertises. Well, of course, “Downton Abbey” is on at the same time as it is on other PBS stations, but I am sooooo over that show. When the Ken Burns cancer film shows in most areas of the US, I will likely not see it until a day or so after, and I will have to really look to see when it will screen on MPT. I’d checked my local listings last night, and ACL was not listed. It did not occur to me to check 5 frickin’ AM the next day for it. It was pure luck I had a sleepless night and got up to channel surf. Who the hell watches a show of raucous music at 5 AM? Well, me. With such recent artists featured on ACL—Nine Inch Nails, Beck, freakin’ Nick Cave—5 AM is NOT the time slot I thought to research.

All griping about my local PBS aside, what a wonderful morning. Yes, I am tired today—maybe I can grab a nap later. Yeah, waking up in the middle of the night sucks, worrying about cancer in such a way it prevents sleep sucks, but what a great outcome today! Today is great! (Cue Ice Cube’s “Today Was A Good Day” in the background.) I saw an awesome show, I was reminded of the power of live performances. Also, BTW, anyone who does not love Gary Clark, Jr. (the Foos special guest) is wrong!!!

So oh no, what??!!! I have to thank CANCER for the GIFT of insomnia??!!! Weeeeellll, I’m not gonna go THAT far. But I concede that the series of events led me to getting up early, and totally enjoying it.

Anyone who has read my older posts, the music related ones, knows that I 1) am a big rock and Grohl fan and 2) do not believe in having heroes. On the latter point—it isn’t fair to dehumanize someone with hero worship, they are merely fallible humans. That said, I will admit to being extremely grateful, indebted even, to Dave Grohl and his various music affiliations. Nirvana, Foo Fighters, wacky collaborations with Jack Black, any of those combinations have been a source of comfort in my post-cancer life. Of course I could’ve faced my post-treatment depression without him. But it’s been a hell of a lot easier with the existence of Dave Grohl.

In Grohl I trust.

Do You Have the Time, To Listen To Me Whine?

A/N: Words in that post title sound vaguely familiar? Yes another music reference, details are at the end for the interested.

I have not been able to sit down and write for the past couple of weeks without being interrupted every few minutes. There are many reasons folks blog, and I’ve come to realize the therapeutic benefits are more important to me than I initially realized. So it’s been frustrating to not be able to think something out by writing. I keep losing my train of thought.

What has been on that train lately is the reactions to the reactions to the no make-up selfie/Facebook game fracas. For the record—and this should come as NO surprise since I call myself the Cancer Curmudgeon—I am unimpressed with the silly games. It reminds me of the head shaving for solidarity issue that gets attention every now and then. I wrote about this in Something I Can Use, and may write about it again. My views are harsh, so I need to take time to cool off before a rematch. But that post from last summer still rings true for me, for now.

I got very frustrated when I read how vicious (threats of harm were issued in some cases) people could be toward cancer patients—the supposed beneficiaries—who dared to criticize these silly games. What struck me the hardest was Kristina Egan’s HuffPo piece called “The Controversy Surrounding the ‘No Makeup Selfie’ Gave It Depth – Without It, It Was Empty”. In this essay, Egan describes a conversation with a stranger on someone’s Facebook page. This stranger asked Egan if she wanted others to get cancer in order to understand what it is like to have cancer. I found that to be a rather vile accusation.

This struck me hard for many reasons I am still trying to sort out, likely over many future posts. But the main issue getting under my skin is this: there are many talented writers, including Egan, who explain what it is like to have cancer, and how and why nonsense like silly games frustrate some of us. This stranger’s question, in my opinion, is stupid; all she had to do was not worry about writing a response, and read Egan’s (or a multitude of others’) words to understand how it feels to have cancer and suffer these silly games, without actually getting cancer. I actually touched on this issue a little in that earlier post, Something I Can Use.

So I wrote thousands of words over the past week, and discussed this with someone I trust, who does not have cancer, but knows other chronic illness all too well. What I realized with her insight was that my thousands of words could be boiled down to this:

“WAAAAHH, no one is listening to what us cancer patients have to say! WAAAAHH, why do people feel the need to open their mouths/type before letting the cancer patient finish her thought? WAAAAHH, no one ever listens to anyone anymore!”

I have a bad habit of bringing too many issues and thoughts to the page as I try to make sense of one single issue, and often wind up with overly long posts.

I began thinking about how, when I started writing this blog, I hoped to contribute to an effort to change the conversation around cancer, away from that single story of: get diagnosed, lose hair, fight hard, be positive to cure cancer, get better, all is well.

I began to think why I want to change that story, or at least see alternatives to that story.

I began to consider how hard it is to get the alternatives to the uber-positive story heard—and to consider that it may not happen in my lifetime.

I began to think that maybe all I’m doing is writing to commiserate, rather than communicate—that I’m not even trying to change any minds about that single story anymore.

I began to think about how I am a bad listener, especially when I disagree with what is being said, even more especially when the subject is Pro-Pink.

I began to think I am arrogant in thinking an alternative is needed, that minds should be changed.

I began to think maybe some minds are changed, a few and a little at a time, and I need to alter my expectations, and be thankful for those who’ve told me I’ve changed their minds.

I began to ponder the chip I have on my shoulder about cancer patients vs. non-cancer patients.

I began to think that ALL my posts could be called “Do You Have the Time, To Listen To Me Whine.” Or I could alternate that title with a line from another song: “Hey! Wait! I’ve Got a New Complaint” (from “Heart-Shaped Box”, by Nirvana, and the next line, “Forever in debt to your priceless advice”, sung with much sarcasm, could be a post title).

I cannot even remember all the things I thought about that I wanted to write about, but forgot them when I finally had a minute to sit down. I think all of this faster than I can type it.

The real issue I started with, about fully listening/reading, comprehending, and having empathy BEFORE responding, was getting lost. I thought, well, I’ll just trash this and leave it alone for a while. But then I stumbled on this quote/graphic:

The only additions I have to this great quote—which almost sums everything up—is to add reading to the listening, and to point out that not even full or complete reading/listening is happening before the reply appears (see NPR’s April Fools’ Day prank).

While I was doing all my over-thinking it this week, I stumbled on yet another article on the classic dumbass things said to cancer patients, the one commendable soul who asks “well, what SHOULD I say?” and the valiant efforts by some to provide tips or advice on what to say. I’m glad progress in that area is being made, but I’m still frustrated by the emphasis on talking to, or at, the cancer patient. I rarely, if ever, see advice suggesting a person to at least offer to listen to the patient, giving them the opportunity to express emotions. I’ve taken a swipe at this issue before (Don’t Speak). One of the most damaging aspects of the Pink and positive cancer culture for me was not being heard when I was expressing fear or negative emotions during treatment. Sometimes it did not matter if others said dumbass or compassionate things to me; I was tired of my words being not heard or just dismissed. But this is just our culture—we all worry about what to say, not how to listen. Hell, this blog might be a direct result of not being able to get a word in edgewise, so this is how I think I can be heard. Sigh. All of this is fodder for other posts on other days, as mentioned above. File under: that post I need to write about all I find wrong with Pink, all colored ribbons, & positivity vs. reality. File under why I blog. File under how this cancer patient, a self-centered only child, became even more self-involved during treatment. Yep, somebody actually said to me “oh great, now that you have cancer, you’ll be even more self-centered.”

So this very long and rambling post doesn’t have much in the way of a point. I’m just whining, and whining doesn’t invite listening. All this post does, maybe, is provide a snapshot of my jumbled mind that likes to get distracted by squirrels and shiny objects, and talk about every topic under the sun at once. I could meditate to quiet or bring order to all of these thoughts. Or I could just obliterate the thoughts with some Metallica—now there’s a post: Metallica vs. Meditation! Yeah, that post is actually in the works.

Or maybe this post’s point is to write more posts, and to ponder the challenges of writing the posts. It is certainly crammed with introspection and reflection, when it started out to be one of my usual curmudgeonly rants. I’m sure I’ll get back to ranting—I like ranting! It gives me some happiness to get things off my chest (that is a proven idea, I’ll get to it when I tackle Metallica vs. Meditation, for real—there is study about it, I swear!). But that is the best thing about having a cancer blog for me. I can fully express and finish my thought (well, not this time, but whatever), and people can choose to read and comprehend or not.

I end with the fact I was up too late last night stalking “Rolling Stone” magazine’s Tumblr for news of the inductions to the Rock and Roll Hall of Fame. In honor of my favorite inductees last night: “Oh well, whatever, never mind.”

Oh damn, that lyric could be another post title. Shut up and settle down, brain.

Regarding the A/N: From Green Day’s “Basket Case”:

Do you have the time
To listen to me whine
About nothing and everything
All at once
I am one of those
Melodramatic fools
Neurotic to the bone
No doubt about it

Sometimes I give myself the creeps
Sometimes my mind plays tricks on me
It all keeps adding up
I think I’m cracking up

I liked this song, and Green Day, back in 1994. But I dismissed them as “little brother music”, not “real” like The Clash or Nirvana or whatever. Ah the arrogance of a newly adult 20something who thinks the music she grew up on superior to all that comes after. Wasn’t really listening or comprehending Green Day very well. Ten years later Greed Day released the punk rock opera (a contradiction in terms if there ever was one!) “American Idiot” and I realized the genius there—and how wrong I was. I’ve seen a lot of bands live, and I finally saw Green Day in 2009, and they are one of the best live bands ever. They used to get accused of selling out—aren’t punk bands only supposed to play small, intimate clubs, not arenas to thousands of people? That old BS. But as I sat in the nosebleed section far from the stage—it was still somehow intimate. Nothing can beat the feeling of singing along to great songs with thousands of fellow fans.

I’m In Love With That Song

“I’m in love with that song.” –from “Alex Chilton”, The Replacements, lyrics by Paul Westerberg

I have been feeling utterly defeated by all the Pink this October, despite my earlier claim to Take October Back. But a very welcome distraction arrived for me last week in the form of the 16 nominees for induction into 2014’s Rock and Roll Hall of Fame.

I pause here to acknowledge the absolute lameness of a former punk-alterna-girl being so invested in the Rock and Roll Hall of Fame. Rock in general is about rebellion, and the Hall of Fame is an institution, the sort of which rock should rebel against. And even if rock became “respectable” somewhere along the way, then things like early and classic rock belong in there, but the punks that came along later to rebel against the established stuff, and then the post-punks after that, I mean, wouldn’t they rebel against that former rebellion-turned-new institution/establishment? See the Sex Pistols’ infamous rejection of their induction in 2006. Even worse, I have to pause and acknowledge that in the past few years I’ve seen a few of the bands that provided the soundtrack of my teen years creep in, which just really means, I’m getting old.

Yeah, yeah, this is a cancer blog, and that will come into play much later in this post. This blog is an indulgence for me; my view on cancer, my personal experience with it, and how I (don’t) function in an American social culture that surrounds cancer, which I find mostly distasteful. So I’m indulgently rambling about music, because it was the one respite I had once I found myself a bit lost upon exiting the treatment treadmill (“you’re all better now, see you in 6 months!”, ha ha). Proof of my allegiance to my method of beating cancer blues is everywhere; in the post Punk Rock (Breast) Cancer, my tattoo (Red Hot Chili Peppers, Hall of Fame inductees in 2012), hell even my gravatar (The Ramones, Hall of Fame inductees in 2002).

I skip over the crap like “rap doesn’t belong” (yes it does, and I’d argue that until I’m blue in the face, and even if I lost the argument, I’d still argue it), “Yes/KISS should’ve been in there loooooong ago”, or “the world is doomed because more people like Nirvana than Link Wray”. Yada, yada, yada. I love watching the arguments unfold on various websites, and agree and disagree with so much of it. “We all come from the damn blues,” said Chuck D. (Public Enemy) in his acceptance speech last year. That should be made into a sign and posted above the door to the museum in Cleveland, or maybe noted in every article about this comparatively (to cancer, for me) silly topic, to remind everyone with an opinion how the whole mess called rock and roll got started.

My humble opinion is any person or band that is inducted, or heck even nominated, including the 16 this year, deserves to be there. I do have my favorites however, and this year I’m voting every day for Nirvana, The Replacements, N.W.A., LL Cool J, and the fifth option is a wild card for me every time. I could write forever extolling the qualities of my choices, but it is the first two I’ve listed that matter most to me now.

As a lonely punk-goth girl (weirdo) growing up in the 80s (remember in the 80s, there was no interwebs, so radio and magazines were the only exposure to music available) I hated what was on the radio; I lived in a rural area where there were no alternative stations—D.C.’s WHFS was an hour out of range. I loved the left of the dial stuff like The Cure (nominated once), The Pixies (never nominated, an outrage) and R.E.M. (inducted in 2007 and yeah, gonna be a snob and reveal I was fan well before they got played on regular radio, and got all famous). I used to stay up for those one or two hour programs of “college rock” on the radio or “120 Minutes” on MTV just so I could hear stuff to my liking. It was on one of these programs I first heard Nirvana’s “Smells Like Teen Spirit”.

People always like to talk about where they were when they heard the bad news of some horrible event, and lots of cancer patients remember all too well, and have written about, where, how, and when they first heard of their diagnosis. My own memory of that, still so sharp, I’d like to erase. But I always want to remember the feelings and thoughts when I heard first heard “Smells Like Teen Spirit”. I was beginning my junior year of college, tired from working my ass off all summer to pay for the privilege of extended education, but still unsure about my future (well, that turned out unexpected, what with all the cancer). I heard that song and knew it would change everything.

Reams have been written about the influence of Nirvana in rock music. To me it was much simpler: the weirdos won. Finally, I could hear music I liked on the radio—which was great because my car’s tape player was forever breaking. With the nomination and almost assured induction of Nirvana, the weirdos win again. And I cannot let this year or this post pass without expressing shock and joy at the nomination of The Replacements. Of all the precursor bands to the so-called alternative music revolution that happened after Nirvana got famous, those bands that faded back into obscurity after it was so quickly over, I thought that only Sonic Youth would get any eventual recognition, and I still find their lack of nomination scandalous. So I view this nomination of The Replacements as nothing short of triumph, even though I am sure lots of people heard their name last week and said, “who the hell is that?”

But here is the funny thing. I know it matters a great deal to me, but not much to most people. All summer, I’ve worn my Nirvana t-shirt with the smiley face logo (see banner) on the front and the less offensive claim on the back that the band is “flower sniffin’, kitty pettin’, baby kissin’, corporate rock whores” (the other version is worse, look it up). People I interact with saw my t-shirt front and asked about Buddhism! Here’s this band that is still a great favorite of mine, that had this tremendous influence on my young 20 year old self, and on the music industry, and no one seems to know who they are/were anymore. Because I immerse myself in entertainment media, I’ve been barraged with details of the 22^nd anniversary of the release of their album “Nevermind”, the 20^th anniversary re-release of “In Utero”. I get a skewed view of the world, I think they mattered greatly. And yet, I constantly interact with people who do not even remember them.

It mirrors how I experience cancer at times. As a breast cancer patient with a tiny blog, who tends to seek out info that reaffirms a notion that Pink is WRONG, I sometimes get the sense that Pink, ribbons, and cancer are bigger issues than they are to most people. I have to remind myself that most people are not as tuned in to the issues, the lies of Pink and that is why they ignorantly continue to buy into it. I have to calm myself down—most people do not deal with breast cancer every day and do not know or understand that some breast cancer patients hate Pink. I wanna scream, “why don’t they get it, there are a million articles about how pinkwashing is damaging.” Well, because not many seek out that info.

Sure, lots of people are “touched” by cancer via friends and relatives, but it is only a small (hopefully growing) segment of breast cancer patients that have done the homework behind what is really happening behind the Pink-party-charity explosion. Just like most people are aware of a Rock and Roll Hall of Fame, but maybe, to paraphrase Nirvana’s “In Bloom”, likes the pretty songs, likes to sing along, but don’t know what it means.

To avoid being strangled by pink ribbons and all the surrounding bullshit, I’ve reveled in the news of the nominations. For the past several days I don’t think I’ve played a song on my phone that was not a Replacements song—yikes, better mix it up with songs by the other nominees! I’ll listen to “In Utero” for the millionth time, I’ll vote (maybe pointlessly) for my favorites on the Rock Hall website for the next several weeks; it is a great diversion. And when Nirvana’s living members accept their induction next April, I’ll try to remember that every once in a while, the outsider voice becomes the mainstream, and I’ll hope that the small segment pointing out all that is wrong with Pink can capture the attention of the world, without smashing any guitars.

“To truly love some silly piece of music, or some band, so much that it hurts” from “Almost Famous”, film by Cameron Crowe, 2000

The Curmudgeon Formerly Known as Cancer Patient

Yes, that is a reference to the musical genius, who fought a battle with a corporation for artistic control and eventually was able to resume being Prince. And yes, I am revisiting the issue of what to call myself, and the struggle with accepted cancer norms, like the battle language.

The other day a blogger on Tumblr wondered, if not fighters or warriors, what exactly are we? And another wondered how to get a loved one to stop using warrior talk in conversation with her, and I have a similar problem, in that my own mother keeps telling me a positive attitude helps one beat cancer (because she refuses to see the scientific proof otherwise). If that were true, I have a friend who should still be alive, instead of me, the realist who should not have made it, apparently.

Well, shit, I wish I knew the answer to these things. There are so many unknowns in Cancerland, that I wish I could embrace the warrior, ass-kicker talk. But I cannot, leaving me with one more unknown, another hassle to navigate. I do not actively choose to not embrace it. I am simply who I am.

It was easier when I was in treatment; I could dodge the warrior and survivor labels by referring to myself as a cancer patient. But now I am out of treatment. I mean, I still need to identify as a patient when I call the cancer center/oncologist’s office. I say my name and that I am a patient of Dr._________, and what I mean by that is, hey, you have a very thick file with my name on it, filled with my info, so let’s cut to the chase so I can get my appointment changed or my question answered.

So WTF do I do and say now? What do I call myself, and how can I interact with the rest of a world that engages in cancer warrior talk?

I know some of how this language came into use is revealed in Gayle Sulik’s “Pink Ribbon Blues”; she covers various contributions to how this language became acceptable—and for once pink ribbon culture is not the only culprit, yellow bracelets have a hand in it, too, if I remember correctly. I’ll have to re-read it, I know. But knowing the how and the why probably won’t help anyone figure out how to change, or at least challenge, this acceptable language of cancer.

I tend to define myself, not just regarding cancer, in negatives; I don’t want this, I don’t want to do that. Hey, I’m a fan of The Ramones and lots of their songs have titles like “I Don’t Wanna Grow Up”, “I Don’t Want to Fight Tonight”. I seem to approach this conversation in cancer the same way: I DON’T WANNA be called fighter or survivor! I DON’T WANNA run a race while wearing pink! I DON’T WANNA participate in pink ribbon culture.

But then I remember, the band was sometimes positive—“Now I Wanna Sniff Some Glue”, “We Want the Airwaves” and “I Wanna Be Sedated”. Well, OK, maybe not positive, but they didn’t just always list stuff they did NOT want—they listed what they wanted as well. There is an online game, and I once found a funny picture, devoted to what The Ramones did or did not want, just because that is what most of their song titles addressed!

So if I’ve got the “don’t wanna” portion covered, what do I want?

Once upon a post, I wrote that I wanted a guide book of sorts for how to do cancer:

I longed for guidance on how to “do cancer”, because I suspected I was doing it wrong…What is offered is “The Idiot’s Guide to Breast Cancer”, when what I needed was “The Asshole’s Guide to Cancer”, with chapters like “You Don’t Have to Wear Heels and a Pink Feather Boa to Infusion to Show Strength” or “(You Gotta) Fight For Your Right (Treatment Plan)”.

And yes, that final imaginary chapter title is another song reference. I’m going somewhere with the music references.

I’ve said many times, littered in various posts on this blog o’ mine, that not everyone does cancer the same way, nor should that be required. Maybe this blog, with every post I write, I’ve written my own personal not-so-silver-lined playbook on how to do cancer, the one I wanted while in treatment. Clearly, I deal with my cancer and all the surrounding bullshit by looking under rocks, pointing at the ugly worms and bugs underneath, trying to understand the whole truth behind whatever health “news/ads/feel-good-news-filler” is being broadcast in a sanitized manner (“…the hidden side of everything” is part of a tagline of a favorite podcast program of mine). I do not find inspiration and coping mechanisms in the packaged pink message, so I draw it from anywhere and everywhere else.

Granted, because of who I am and my tastes, I tend to draw inspiration from some strange and disparate sources. I think one can tell from most of my blog that I won’t be found listening to Kool and the Gang’s “Celebration”, that sickening staple of pink marathons (because having cancer is such a party, NOT).

A few posts ago I mentioned a NPR interview with Elmore Leonard, and his story about filmmaking with Quentin Tarantino that gave me a much needed reminder of my ability to know my own cancer better than random people who deem it fit to tell me (or anyone) how to treat cancer. I think I once repeated the infamous Conan O’Brien quote from a commencement address he gave in the wake of his fracas with Jay Leno: “What Nietzsche should have said is, ‘Whatever doesn’t kill you, makes you watch a lot of Cartoon Network and drink mid-price Chardonnay at 11 in the morning.’” I have much affinity for O’ Brien; his new TBS show began just as I was about to start treatment. Sleepless, I watched his new show and reveled in his new success, and as I look back, I think I may have irrationally and illogically regarded him as a lucky charm: he prevailed, and then, so did I.

But it isn’t just Prince, The Ramones, Beastie Boys, O’Brien, and Tarantino I’m building my playbook from. I absorb and apply any tidbit that works. There are likely hundreds of bits of inspiration I’ve found that simply would not be considered inspirational, or even recognizable, to most folks, but they work for me, so I use the bits. The biggest, of course, is Dave Grohl, ironically, a “survivor” it there ever was one, given his former band mate’s affinity for heroin and guns. In many interviews with him I’ve heard recently he has talked about the power of not knowing the “right way” of doing something, he has touted the DIY ethic that brought alternative musicians, himself included, to great fame in the early 90s.

It is this DIY ethic I’ve applied to my cancer playbook. It isn’t pretty, this book, it is filled with the heavy and sometimes not-so-cheery-fluffy-pink things that I like. The only smiley face in it is the old Nirvana band logo. The book is not yet finished and maybe never will be. I still don’t know what those of us who object to a label of survivor or warrior should call ourselves, although I’m sticking with Cancer Curmudgeon for myself for now, given the accuracy of the name. I still don’t know how to have conversations with others who rattle on about positive attitudes, or who use battle talk. But I am always searching for those answers.

But I do know this: you can borrow a page from my un-pretty book if you need it. And I know you can make your own playbook. No one has to accept the cancer mainstream language and attitudes if they do not fit. It is difficult, but it can be done. The more of us that reject the sanitized and non-inclusive versions of cancer presented in the mainstream (need I remind everyone that pink ribbon culture ignores those with Stage IV, and any other kind of cancer, hence, non-inclusive), the more our voices of dissent will be heard.

Here’s to a new playbook that replaces that damn pink one.

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