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.
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.
Author’s Note- Dave Grohl’s SXSW Festival Keynote Address took place a couple of weeks ago, but due to ongoing internet connectivity issues, and just the insanity of life, I only managed to hear it recently, on NPR’s Fresh Air, then I managed to watch it on YouTube. I’ve listened to it–numerous times–since then. Even if you aren’t a fan, it is still worth a listen, but be warned, he’s pretty foul-mouthed (kind of like my blog, but much much worse). There are many references in this post to the keynote address, and I basically modeled the post on his speech. But, you don’t HAVE to listen to his address to get my point. -anotheronewiththecancer aka cancer curmudgeon
Your keynote address at the recent SXSW Music Festival was one of the best speeches I’ve ever heard. One of your main themes, finding your own voice, resonated with me, as I am sure it is doing with many others.
So this is what MY voice wants to say.
One two three four. **
Several years ago I made a poor professional choice that resulted in my being surrounded by a few people I wish I never met. I lost not only my voice, but my way, maybe even myself. I spent too much time trying to please others, changing myself, trying to fit in, something I have never done very well. It impacted me in terrible ways…I failed at the effort, and I was miserable. I was preparing to remove myself from these harmful influences when I got a breast cancer diagnosis.
I stupidly bought into what I call the “cancer is magic” way of thinking. I thought I would get a spiritual, emotional, everything-but-the-kitchen-sink awakening, and things would change. I would be better at everything, life would be awesome, when it was all over. Oh how quickly I learned that cancer does not change anything…a person with cancer, everyone they know, and all life situations, are still the same. One of my many mottoes is, cancer only makes it more so. Everything I was before, I am now, but more so. My tolerance and patience-already not my strong points-all but disappeared. All the problems I had before my special news were simply magnified.
Two of the most hurtful criticisms I took repeatedly in the past 7 or so years were 1) I am immature and 2) I am a bad writer. And there were many, many more criticisms–to the point I am not sure I will ever regain the level of confidence I once had. I was in a bad place, and cancer became an extra horrible obstacle in an already intolerable situation.
Barely a month after completing active treatment, I said “fuck it”. It was messy, walking away so abruptly, but it was the best thing I’ve ever done. I don’t regret it, not even a single second. Cancer didn’t give me a lesson that life is short, I already knew that (because cancer is NOT magic, it is not an awakening for everyone). But I knew my life might actually be or get shorter. Translation: don’t waste a single fucking second of time being miserable.
So what did I do, finally free of the voices whispering in my ear that I was not good enough? I got, what you in your keynote called religion. I turned a side project into a business that allowed me to spend lots of time driving. While driving, I sang (screamed) along to old songs I loved when I was in my teens, twenties, even my thirties, up to present day. “Sonic reducer, ain’t no loser” (“Sonic Reducer”-Dead Boys), “Fuck you, I won’t do what you tell me” (“Killing In the Name Of”-Rage Against the Machine), “Twenty-twenty-twenty four hours to goooo I wanna be sedated” (“I Wanna Be Sedated”-The Ramones), “We jumped up on the table and shouted anarchy,” (Punk Rock Girl”-Dead Milkmen) and of course, “No, I cannot forgive you yet” (I think you know that one). I all but hung my head out the window like a dog while screaming that shit at the top of my lungs. Like your first punk rock club experience, it was heaven.
All these songs were the ones that got me through my misguided youth. I was right back to being immature, or so I thought. Turns out, all that chipping away at me those people did, telling me I was immature, made me even more immature…in the company of these jerks I felt like was 11 or 12 again, and my emotional reactions reflected that. Unfortunately, this was my state of mind during diagnosis and treatment. I had to grow up all over again, to re-grow my confidence, and the best way to do that was to embrace that immaturity…to be a brat and regain my punky snot-nosed self that entered adulthood, and I did it through music. Eventually, I got a little confidence back. I realized there was nothing wrong with who I am–people calling me immature, well that is their opinion, and I no longer give a damn–because I know I am not immature, and my opinion is the one that matters here.
Obstacle 1: cleared
On to the next thing.
During diagnosis and treatment, I longed for guidance on how to “do cancer”, because I suspected I was doing it wrong. I could not deal with the Pinkness expected of breast cancer patients. I was far from the Livestrong “hero” shit. I screamed and cried and was scared, quite often. I looked and looked…to the point I once Googled the phrase “punks with cancer” or something like that, just because I wanted an alternate way of doing cancer. 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)”. What is prevalent is Komen and Livestrong–promoting a single ideal of how to behave if you have cancer, with shiny, happy celebrity patients. The only good thing I found to read during my final rounds of chemo was a biography of Joey Ramone written by his brother (which includes Joey’s final days with Lymphoma). I read and cherished it. I continued looking for ways to cope after treatment, as I slowly emerged from the drug and exhaustion induced haze over my brain. Of course, I was dealing with a nasty bout of post-treatment depression, which is common, but rarely spoken of in the cancer warrior culture.
Finally, I found blogs, which you compare to the zines of our old days. I had regained a little confidence so, I decided to add MY dissenting voice to that realm.
You said, “It’s YOUR VOICE. Cherish it. Respect it. Nurture it. Challenge it. Stretch it and scream until it’s fucking gone. Because everyone is blessed with at least that, and who knows how long it will last . . .”
That is what I’m doing. Am I doing it well? Who knows. But it is, as you say, “MY VOICE.” I’m not internet famous, or blog famous, or whatever defines a popular, well read blog. But the readers who’ve reached out to me seem to like what I say…even tho’ I’m what Kurt called a negative creep. Hell, if it were not breast cancer I was bitching about, I assure you, I’d have found some other topic–I could name a few now–but this is what I have the bad luck to know best.
There is no right or wrong way to do my blog, because it is all mine…to paraphrase you.
Obstacle 2: diverted
I have conquered much in the past year. Reconnecting with who I was to get back to where I need to be, getting my first tattoo at 41 years old–a tattoo that is a band logo no less–to cover my surgical scar, rather than reconstruction. This would be considered immature by those I used to know, I would not have told them I was going to do it–hell, I probably wouldn’t do it all. My voice, my choice.
I did not have the good luck to be left to my own devices, I had to sever ties and declare my independence from the ones who would stifle my voice. But that didn’t mean I was totally alone. I had people giving me food, taking me places. But what was better was the emotional support system of another breast cancer patient and two ovarian cancer patients, who gave me all the courage I so desperately needed to have my own little Independence Day–they don’t stifle. They coaxed the voice out of hiding. For them I have nothing but love and gratitude.
In your speech you said, “I was possessed and empowered and inspired and enraged and so in love with life and so in love with music that it had the power to incite a fucking riot, or an emotion, or to start a revolution, or just to save a young boy’s life.”
I dislike the hyperbole in cancer warrior culture–the warrior-fight-battle language is a bit over dramatic; I prefer to only use hyperbole for sarcastic or comedic effect. “Hope”, “battling” and a positive attitude (which I lack anyway) did not save my life, better living through chemistry did that. So I’m not gonna say you or your music “saved my life”. Instead, you, your music from Nirvana to now, did something better. It helped me endure and thrive, and kept me sane. Your speech helped me see that all those nights listening to weird music my friends hated while I was in high school, created the inner strength I needed all along–to face all the suckage of cancer. I know this much is true when I’m in the MRI machine and instead of hearing the awful noises it makes, I hear Ministry and Public Enemy songs in all that clicking. I know this is true in those rare moments I reflect on my funky-tattoo-over-reconstruction decision, which flies right in the face of our boobies-obsessed culture.
You talk about having heroes, wanting to be a hero, hoping your daughters become heroes too. I don’t believe in having idols/heroes; celebrities, family members or otherwise. That is one little bit of the punk rock ethic that I will never shake off–look at who society sets up for worship–those suckers are NOT better than me. And on the flip side, I cannot imagine anyone would want the pressure and scrutiny of being a hero. So it is with some reluctance I dub thee my hero. And not because I think you are perfect, on the contrary, you’ve been fairly open and honest in showing your faults. When you wrote/sang, “There goes my hero, he’s ordinary,” you meant someone else, but for me, it is you–you are my Beatles, my Rock Against Reagan Concert, my Bad Brains, my Edgar Winter. So, in my eyes, according to your address, you’ve done what you set out to do all those decades ago.
These days, I still listen to the songs representative of my so-called immaturity, so I don’t lose my voice again. And I’m not always aggro-woman. I also sing along to Bob–“Oh my Little sister,don’t she’d no tears…ev’rything’s gonna be alright, ev’rything’s gonna be alright.” And whaddya know, I don’t not cry anymore, and it is alright now.