A/N I started this post a week or two ago, but thought it would be taken as offensive. But I read a couple of things since, including Nancy’s Point and some horrible comments on Huffington Post that have renewed my desire to speak out to explain why, for me, sugarcoating death is so repugnant. Please click the link and read Nancy’s post, as well as the other post she links by Dr. Wosnick. Those are much nicer, more eloquent thoughts than the ones I express here. What I’ve written here still is a bit offensive, I even offend myself with it, but I think the topic is worth discussing.
The d-word….
No I do not mean dirty words like the f-word or the b-word (you know I have no problem just putting those actual words in here). But I meant death/dead/die.
It is strange that we avoid saying dead or died, yet, at least here in this rural area in which I live, some mourn quite publicly for a long time, perhaps morbidly so. On any given day I drive down a road and see at least one car with one of those “In loving memory” stickers, complete with date of birth and date of death. Or I see those tiny imitation grave sites that develop at the site of a car crash, off to the side of the road, complete with flowers, pictures and other kinds of things one puts at a tombstone (I assume other trinkets are also at a grave site) . So, those who engage in this very public mourning and memorializing are acknowledging quite obviously that the loved one is dead…yet in conversations many would say “so & so passed away”? In the example of the stickers on cars, it looks like an advertisement that the person is dead, but no one will actually say “so & so died”.
Why do we avoid saying “so & so died”? We say we lost someone, or they went to the light, into that good night or—hell I’m guilty of it too, I once said right here on this blog someone was “gone”—as if he just went to the store for milk or something. See how quickly my mind changed about the euphemisms? Lost is the one that really disturbs me, because in my literal mind, I may know that the person is dead, and I immediately assume the body was misplaced.
I find these euphemisms silly, and annoying. I especially hate them in Cancer World, where there are combined with the warrior/military language. Given the fact that both here on my blog and in real life I’ve been called “honest”, “candid”, and “direct”, is it really any surprise that I say any of this?
Oris it justin Cancer Land that the battle phrase is used? I’m not sure I’ve ever heard anyone say their friend/loved one “lost their battle” to heart disease, to stroke, to complications from surgery, to old age (although many of us wage war on that one, don’t we, with our make-up, night creams, etc.?). Although I will say I often hear someone had a heart attack. “Is he ok?”, “No, he passed.” See, no d-word again.
But of course, the battle language of cancer must be upheld, and it is all part of the blame-the-patient package. The patients must be responsible for all aspects of their special cancer…their poor diet/drinking/not having kids caused cancer in the first place, and in the event of death, it is NOT due to the treatments not being effective enough, oh no, it must be because the patient had a bad attitude and/or did not fight hard enough, therefore making him/her a loser.
The reason I insist we need to say the d-words is because it needs to be up-front-and-in-your- face that cancer kills, in an active, personal away. To say one of us lost the battle, like we are bad soldiers, is an insult. It has been said before and I simply parrot it here: I’m NOT a soldier although I suspect my body is a battlefield in which cancer and treatment fought one another bitterly. I was just kind of…there, getting the environmental impacts, like a scarred landscape for instance.
Like Nancy’s mother I do not want the obituary to say I passed away after the battle with cancer (although I do not presume to know why she said that or what she wanted instead). If I die of cancer before I reach the average age at which American women die, then it is cancer that killed me and I want that known. I want it known that cancer killed me, that medicine and lack of research into prevention failed me, I did not fail in the war.
So for me, no passing away, no losing of any battles, no raging against the dying of the light. Death from cancer is not the time for poetic language, if I’m the one doing the dying.
The only thing I miss about the cancer treatment center–everything automatic in the bathroom. I never had to push a handle to flush the toilet. I got soap and water simply by holding my hands out under the dispensers. Heat for drying turned on by holding my hands under the nozzle, or I could get a paper towel simply by waving my hands under the last towel poking out from the dispenser. It’s all there to avoid spreading germs. I like that.
I run into so many women who miss, absolutely miss, being in the treatment world. They miss the doctors and nurses, the care and the support. And I know it is a comfort to be in that care, because I know the paranoia of even the slightest ache or scratch being an early indicator……it’s back.
I do miss one of my infusion nurses. I miss her as a person, but I do NOT miss being in that chair. I like my oncologist, but I only want to see him every six months. Part of this is because I am not very sentimental. Part of it may be because of the Herceptin. I was stuck going there every 3 weeks for a whole year. I was pretty sick of it by the time I finished. And I never felt like I was leaving anyone’s care. These days I dislike going in the building, even for support group meetings, but especially for the six month check ups. I long for the day many years from now, when I no longer need ever enter that building again, if I can manage to stay tumor free.
But I do miss those bathroom conveniences. Every time I use a bathroom in a school, at the movies, the mall, ANYWHERE, I miss that cancer center bathroom.
Author’s note: I did not want to put the NSFW pictures of my tattoo in this post. Click on the page called at the top called The Right Choice For Me – No Reconstruction.
So I had an idea for a cool tattoo to do instead of reconstruction + fake-ass nipple. Now what? I needed to do research to see if it was even feasible, and to find out if anyone in my area could or even would do such a thing.
Bear in mind, I was looking into this project last fall before this story appeared on Huffington Post, (and everywhere else) and before I got a board (an account, or before I joined…what is the proper Internet speak here?) Pinterest . So I was going into this blind. I did see a few pictures, and bought one stupid book called “Tit Tats”, which had absolutely NOOOO tattoo ideas or suggestions. Mostly what I found were designs of flowers, birds, and that ghastly pink ribbon (gag). But I found useful information too, like, the suggestion that writing over a scar, or using solid color over a scar, were not recommended tattoo options.
Yikes, that is what I wanted to do!
But at the same time, I found an artist in a near-by city that did this sort of work–cosmetic tattoos, this type of thing is called. All the local oncologists/surgeons refer their reconstruction cases to him.
I met Eric in late summer, if I recall correctly. I told him what I thought I wanted, and also disclosed what I’d learned in research–that the solid color and the quote might not be a good idea for covering a scar. Maybe I should just go with flowers or something–what should I do?
Not at all, he assured me. Not only would my design idea be ok, he thought it was cool.
Finally, the first time in this whole breast cancer mess–shuffling in and out of sterile medical rooms (and make no mistake, places where one gets a tattoo are not what we see on TV shows, which is what I pictured–it’s actually alarmingly like a doctor’s office), talking to various members of my cancer care/treatment team-I felt like I had some control in the situation.
Yes, yes, yes….the medical system is set up now to make sure the cancer patient feels in control, feels as though he or she has a say in the treatment decisions. But it is a false sense of power. Cancer patients are handed the most horrendous news they may ever hear, and simultaneously given a ton of information about disease that requires some medical knowledge to comprehend. So yes, it is nice I was “empowered”. Capable of making an intelligent decision? Not always. In fact, I was talked out of my very first decision by the surgeon who diagnosed me. When told the tumor was so big it occupied nearly the whole breast I said “Cut this thing out of me NOW…I need cancer out of my body NOW”.
“We can do that now if you want, but here is my suggestion.” She proceeded to explain that the tumor was so large that the mastectomy would be quite severe, and getting the skin to cover the area that would be removed…well, that would have to come from another part of my body, so even more scars would ensue. So, I was urged to decide that I should do chemo first, to shrink the tumor. What do you know, the doctors, the ones me and the insurance company pay for the “advice”, were right.
Sigh, is nothing ever simple? In the end, despite all the “it is your treatment decision” talk, I was in no position to make any call. The fact I have a B.A. in Literature, not in anything remotely medical or science-y, probably had something to do with that. That is not to say I was a complete moron about what was going on, or a submissive little patient all along. It is just a difficult time to learn all one needs to know to make informed decisions, especially when one thinks they need to be made quickly. But all this is another post.
So, full steam ahead! I was still hemming and hawing about the quote. I would continue to do that for the next several months…while dealing with the holidays (which for me start in October, because Halloween is my favorite), my mother’s health scare, and the dreaded six month check-up activities (blood, mammogram, and that stressful meeting with the oncologist).
During all of that I decided, yes go with my gut, stick with the Churchill quote. I called Eric back, during all of this he’d been kind enought to draw a draft of the idea. The deed would be done in February.
Author’s note: I did not want to put the NSFW pictures of my tattoo in this post. Click on the page at the top called The Right Choice For Me – No Reconstruction.
In Part 1 I explained why I rejected the notion of reconstruction. Now I will explain how I arrived at the decision to get a decorative, NOT a reconstruction based, tattoo.
In my recent post Punk Rock (Breast) Cancer, I went into detail about my struggles with being perceived as immature, and how I got over that, as I also beat down my post-treatment depression. In short, it involved listening to many bands I loved when I was much younger, but not so immature as I’d been led to believe. While spending many a day revisiting all my old favorite bands and their music, I had the classic light-bulb moment.
Now, as I’ve said before, I’m one of the few who did not get a tattoo in the 90s like everyone else did to “express individuality” (ha ha, it’s ok to be different as long as we are all different in the same way). Until a few weeks ago, my only tattoos were the ones marking my body for radiation.
Despite what the abbreivated playlist the previous post would indicate, (or what the nature and language of most of my posts would indicate), I have a bit of a conservative streak. Or maybe it is the nature of one who never gambles, and over-thinks it too much. Or maybe it is just my inability to committ to anything (no I’m not married, and yes the fear of committment is a part of that). In 1992, the first time I went to Lollapalooza and the first time I saw the Red Hot Chili Peppers, it was great, but my 20 year old self figured I would grow up, get old, stop liking this silly rock music, no longer be a member of what was then called the Alternative Nation. Did I really want any of those tribal tattoos permantely etched on my skin? Bleh, no. I mean, how would that look on a 40, 60, or 80-year-old body?
Cancer has a way of aging a person, and sometimes a decision that seemed mature and forward thinking back in the day just seems stupid now. I looked at my 40-year-old, tattoo-free, yet scarred and damaged body. What on earth was I so worried about back then?
At a support group session, sitting on the beach on a perfect evening, a random joke about getting a tattoo over the scar instead of reconstruction ceased to be silly, or a joke. I mean, when the nipples are replaced, the coloring is essentially a tattoo. Is there a difference?
The answer is no. The answer is, life it short, who knows if I’ll even see 60, who cares.
The rest came so easy, too easy. Like I said, I over-think it all the time.
My first gut reaction was, what band have I seen more than any other, in fact, what band did I just see a couple of months earlier, in a “Done-with-treatment-done-with-bullshit-in-my-life” celebration? The Red Hot Chili Peppers. They’d just been inducted into the Rock And Roll Hall of Fame in April of 2012. I’ve seen tons of bands, some more than once, but RHCP I’ve seen four times in a 20 year span. I kept explaining that to some young people in the hotel lobby after the show–“20 years, folks, I’m OLD”. But the cool thing about RHCP, while I may have been an elder in attendance that night, the youngest concert-goer I saw was still in diapers. Babies know a good groove when they hear it, and RHCP brings the funk.
My tattoo choice was a no-brainer. I always admired the band members’ various tattoos. Lead singer Anthony Kiedis has the band logo on the inside of his right wrist. Inspired by seeing that time and again, I realized what I wanted. I’d get that logo…hell it kind of looks like a substitute nipple! And maybe instead of their name, I’d get a cool quote around the logo.
The quote aspect posed a problem many times in the process for me. My first idea was the quote “If you’re going through hell, keep going”, often attributed to Winston Churchill. The fact that it could not be definitvely attributed him made me teeter totter a bit.
Here are a few other ideas I had:
“I’m a survivor, at least that’s what everyone tells me.” – Courtney Love
“I don’t think anyone ever gets over anything in life; they merely get used to it.” – Douglas Coupland
“Do what’s right for you, as long as it don’t hurt no one.” -Elvis Presley
“To the dumb question, why me? The cosmos barely bothers to return the reply: ‘Why not.'” Christopher Hitchens
“Scientists now believe that the primary biological function of breasts is to make males stupid.” -Dave Barry
Plus, the quote at the start of this post.
Some were silly, yes, but what the hell? Courtney Love’s brutal statement, Dave Barry’s stilly ones, reflect how I still feel now about the survivor language in breast cancer, about boobies-obsessed culture, and just how I felt period. But did I want any of those sentiments tattooed on me?
The alledged Churchill quote is a bit more nobel than I would normally go for, but it seemed to fit me for so many reasons. Plus it was my first, knee-jerk, gut idea. Always go with my gut. Even now, I forget to do that.
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
“I hope I still look like a rock star,” Dave Grohl gives the keynote address during the South By Southwest Music Festival at the Austin Convention Center on March 14, 2013 in Austin, Texas.pic by Gary Miller/FilmMagic
Dear Dave,
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.
The next post is gonna be “Lord of the Rings”, butt-numbingly long, but hopefully not as slow going as “The Hobbit.” It should be a fast read. It is sort of a supporting player in the continuation of my story of funky tattoo vs. reconstruction–which I swear I will finish writing. This next post should give an idea of why writing it has been so hard.
This post, in addition to being a rather personal explanation of I got to where I am now, cancer in tow, is a thank you of sorts to readers who’ve commented on what I’ve written. It will explain why it helps me, more than I could ever express, to continue telling my story and ranting all over the place, and to bolster a much damaged confidence. Seriously, every bit of appreciation repairs me just a little.
To all of those who’ve liked, commented or otherwise contacted me about the “Take the Mythical Image…” (on WordPress and Tumblr) BIG THANKS. Those of us who refuse or just cannot fit that image–because we know depression, or hate pink, or have mets, or omigoodness have some other cancer (heed the sarcasm there, please), I assure you we are not alone. Whether you choose to simply not be a part of The Image and step aside, or like me, you openly criticize it, good job…it is the needed baby step.
I know I am a broken record about things that irk me–The Image, the sexualization of breast cancer, BRCA testing (as research-good, sold as a tool to fight cancer-no it isn’t, yet), the over-study of the same causes of cancer over and over (alcohol bad, carrots good, we get it, move on people), the misuse of the words prevention/early detection…well, you get the idea…there are many things. IN my humble opinion, the only way to bring about change is to keep asking for it, keep the pressure up. I desire change in cancer and the world at large most desperately.
anotheronewiththecancer 