“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.
It is possible I’d become less anxious about mammograms now that I’m 3 ½ years out from diagnosis. I’ve said a few times on this blog that I’ll never be “over” cancer—that fear of recurrence will always be with me. I know I am not the only person who thinks like that. That great Slate article published last year quoted Dana Jennings: “Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”
Well, that nails it.
Medical facilities still grate on my nerves, so, I was only a tiny bit less anxious for my recent experience a couple of weeks ago. So it was a bit upsetting to be shown an image with a new, large white area on the chest wall under the place where the original cancer had grown. It was more upsetting to get hauled back to meet with the radiologist to discuss it, although I do appreciate that he did meet with me. Of all the imaging I’ve had done at various locations throughout this whole cancer mess, this was the first time I’d ever met with the person reading the images. Usually, my interaction is limited to the person putting me or parts of me into machines, and the radiologist is hidden like the Wizard of Oz or something, issuing directives and proclamations.
“Probably” scar tissue from the surgery, he said, but he’d like to do a MRI. I handed him the disc of images from my last MRI, from the summer of 2012. That was a year after the surgery (April 2011). No white area. “Still,” he said. “Probably”, he said. “Scar tissue.” How about that new MRI? Well, at least I got through 2013 without getting an MRI. 2010, 2011, 2012, 2014, not so much.
The MRI was ordered, scheduled, and approval from new insurance company obtained (because I refused to have the MRI unless approved—I’ve fought that rejection-after-the-test-is-done battle before, and I cannot afford the MRI, period). For 6 days between the mammogram and MRI I went down that cancer road again, assuming the worst because I already know “bad”—I don’t want to know “worst”. The dread, paralysis, and everything just overtook me like it did before. Maybe worse, because my financial and job situations are different now. Even though I did not have all the puzzle pieces—like an actual diagnosis, treatment plan—I was still trying to come up with a strategy for how to handle the worst.
Words like “probably” and “unlikely” or “the odds” now scare the crap out me. As mentioned in the previous post, my initial diagnosis was a sucker punch—I was just being proactive, following the “rules”, when I decided to get a mammogram after my aunt’s diagnosis. I thought it so unlikely I’d have it so young, while another family member was having cancer. But when symptoms presented, I got another mammogram, two ultrasounds (one with biopsy, one without), and the MRI which finally established just how large the tumor was. Each new test result just seemed to yield worse news during those first frantic days of cancer. So my take away has been: test = bad news, and more tests = wait, it gets worse.
Fortunately that wait-it-gets-worse streak ended back then with results proving cancer was confined to the breast. And the streak stays at the end now—within 24 hours of the MRI, I learned at least that there is still no evidence of cancer.
Obviously, I’ve experienced a gamut of emotions. Upon getting my good news, relief was the most prominent. My week-long headache went away and I was finally able to sleep. In fact that is kind of what I’ve done since then—sleep and do mindless things like watching movies, reading, wandering the internet. My ability to focus, never great since I was always hyper and easily distracted by shiny things, was destroyed by cancer. This new, mere threat sent me right back to the cancer days when I was utterly incapable of focus (hence the lateness of this follow-up post). Of course, the whole time I was processing this incident.
Physical scar tissue is what caused all this upheaval, and it re-opened the scars on my psyche. They were healing, and now they are not. This is not to say I was not fully aware that this sort of thing would and could happen. I even wrote about this a few months ago (My Reality and Your Fairy Tale), and heck, even before that (I Can Pretend).
This is the scar tissue, the reality, I wish more would see and understand. This is a reality I think is sorely under-represented in the media. Before I got cancer, I believed what I saw: get cancer, go bald while getting treated, then: all better! Somewhere in the midst of being overwhelmed by the diagnosis, I began to grasp the lifelong effects in store for me. As I said above, and in past posts, my cancer experience has been a sucker punch. The current and ongoing sucker punch for me is this refusal by others to even comprehend the scars—physical and mental—that linger after cancer.
I’ve been thinking quite a bit lately about why I blog, or even the nature of this blog, about navigating social interaction with others who do not know or will not accept what I think are incredibly obvious truths about cancer. Whatever the word truth means anymore—everyone has their own version, right? I’ve been thinking especially about this absolute refusal by society to think there is only one story of cancer: get cancer, fight, and either win (patient recovers and cancer never comes back and all is well) or lose (patient dies because of poor fighting skills). Scars are never considered. But I will continue to write about the scars—not just the physical ones on my body—the scars caused by this cultural myth of cancer.
Er, as soon as I can force myself to focus again, that is, will I write these things.
But in the meantime, I remind everyone I’m a Cancer Curmudgeon, and I am indeed socially awkward. Usually sarcastic, rarely sincere. But I do sincerely thank all of you that sent good vibes and well wishes in comments and in private messages. I am humbled and grateful.
A/N –This is the final part of my tattoo-instead-of-reconstruction story, click links for first parts. I’ve been lazy about finishing it, and now I realize I did not have the clear focus to say what needed to be said. I just got that focus.
I’ve renamed the page that contains pictures of my non-reconstructed breast after lumpectomy and after tattooing to make a very important point: The Right Choice For Me – No Reconstruction. Let me, the Cancer Curmudgeon, state for the record, unequivocally, in the event I’ve not made it clear enough, that yes indeed, this is a very personal choice, and mine was perfect for me. I love my Red Hot Chili Peppers band logo tattoo. My tattoo in lieu of replaced nipple looks fabulous in and out of clothes.I’m very happy about my choice. I made the right choice for myself and I’d do it again in a heartbeat.
This is not a comment in any way on others who’ve elected to reconstruct. I simply want to reaffirm that my choice is right for me, and it might be for others as well. The point of all this is to reiterate, as I and many others have said before, there is no one right way to do cancer.
What brought this on? Commenting on HuffPo, of course. When will I get it through my thick head to avoid that site at all costs, even when other bloggers I like post links to it?
A few days ago I read some HuffPo blogger’s essay describing in detail her reconstruction. That’s great, there are a lot of these stories of mastectomy, expanders, reconstruction and etc. on blogs I follow. Hell, nearly all the comments on the essay itself included additional personal mastectomy stories. But stories of non-reconstruction seem a bit less prevalent, and therefore I’ve had to work harder to find them. I mean, sure, there is P.Ink on Pinterest, but that is pictures, mostly, the stories behind are not there (or they were not before, keep reading).
So in the comments, I said:
“I wish more shared their decision to NOT reconstruct, as I have done.”
I thought this statement expressed a simple wish, not a lament that I’d regretted my decision. Here is a response to my comment:
“Why? I can’t imagine not wanting to look good in your clothes and feel good about yourself. It’s also a very personal choice.
I lost one to cancer and one for preventative measures. I am very happy with my reconstruction. Originally I did not intend to have my breasts replaced but after talking to women who had done it, I changed my mind. Like the writer said, the physical impact is minimal, it’s a fairly minor surgery. And the mental consequences are only what you make them. I chose to accept it as over and done with. Every woman should aim for that attitude. It’s just not that big of a deal.”
(My response to her is a condensed version of this post.)
Where did I say in that one sentence that I thought I did not look good or feel good? Where did I criticize anyone’s choice to get reconstruction, just because I’m curious about different stories? Why did this woman assume that any woman who opts out of reconstruction looks and feels bad, and that this bad feeling was the motivation behind my comment? The third sentence, in which she acknowledges that it is a personal choice, does not make up for the judgmental tone of the previous. To me, in my irritated state, it implies that the ONLY presumed way a woman can look and feel good about herself is to have replacements. It negates her following statements about mental consequence and attitude, which again, assumes that any woman who elects to not reconstruct must not be happy—like I’m just sitting here, crying over my scar, because that is the mental consequence I’ve chosen. Again, read the links above to understand fully the path to my decision.
Granted I might be a tad unfair here, she does not know me or my blog, or the story I’ve documented on my blog. But, again, that’s just it—she doesn’t know “me”; it was just a comment from another reader, one she has no knowledge of. I’m stupefied that anyone would just automatically assume some random reader (in this instance, me) made this comment out of being unhappy with the choice, would NOT have done something totally different—like get a tattoo—and do it on purpose and LIKE IT, and not consider many other women might also have made unconventional choices and were happy about them. Seems there is a whole world of cancer patients out here that refuse to fit into any a narrow world view. I happen to be one of them, and I’m blabbing my story.
Of course, her opening shot of “Why?” says it all. Not only does she not think anyone could be happy doing anything other than reconstruction, she doesn’t think those who’ve opted out should even speak up. “Why” she asks, as if we do not even deserve a voice, especially since she assumes that voice to be only whining about our “wrong” choice.
I HATE breast cancer, that I had it, and that it damaged my breasts, anyone’s breasts. The pink ribbon’s “tyranny of cheerfulness” (Samantha King, “Pink Ribbons, Inc.” film) demands women conceal the sadness that can accompany loss of breasts falsely presents breast cancer as a party, whose attendees are warriors who never falter. I especially hate this notion that women who have mastectomies “just get new ones”, a comment I’ve seen/heard mastectomy patients REALLY condemn. I hate the save the ta-tas culture that blithely dismisses the lives in need of saving with that slogan, and that to save those lives ta-tas usually need to be lost, making the slogan a total lie. Indicating the loss is “no big deal”, to me, is incredibly dismissive of those of us who’ve really struggled and mourned our breasts, and by reading numerous other bloggers’ stories of mastectomy and reconstruction, sounds like many women I admire mourned their breast loss, and have written about it quite well. See Nancy’s Point and Chemo-brain, just for starters.
Another thing to consider in the story of how everyone does cancer: some folks have better emotional support and tools. Or some of us know the best way to deal with anger, sadness, and negative emotions is to let them out, not submerge them. And some folks have some incredibly tough personal situations in addition to cancer which can make the experiences much more difficult—it isn’t like every other problem in life ceases during cancer. If anyone is lucky enough to have a no big deal kind of cancer experience, great; now, stop lecturing everyone else. Stop telling others what kind of attitude is appropriate, because some of us choose to point out the dark side of breast cancer because we want to help the patients coming up behind us, rather than just glibly telling others to improve the attitude. And certainly stop assuming knowledge of others’ extenuating circumstances beyond cancer—it greatly influences the cancer experience—it is no one else’s right to determine for others what is or is not a big deal.
I may hate what cancer did to my breasts, and I once mourned the damage, but I love what I did to reclaim them, to own my scars and to own my experience, to make my cancer experience absolutely Cancer Curmudgeon-y. My scar and the fact I had cancer are a part of me now. Just like the time I got hit in the face with a clothes hanger, leaving a dent at the top of my nose. Just like the time I dropped a very large, heavy piece of glass on my foot which has left my left toenail forever screwed up. All of this is a part of me. So I took the breast surgery scar and used it as a backdrop, a canvas, if you will, that reveals even more important aspects of me than my cancer status— which is a lifelong love of GREAT music. For a year I avoided looking at my body, my scar, I just hated it so much. Now, I catch sight of my scar, I smirk, and laugh at the anti-reconstruction rebel in me, the late bloomer/formerly-uptight-woman-worried-about-how-a-tattoo-would-look-at-40 me who finally got a 90s tattoo, two decades later. I think about RHCP bassist Flea, one of the greatest, or maybe THE greatest, bass player of the rock era—sorry Geddy Lee, John Entwistle, John Paul Jones, and Les Claypool. Oh, well, lookee there—I’ve used my cancer scar to jump off and think about things far more important and interesting to me than my case of cancer. Mental consequences, indeed.
I pondered in a recent post about folks judging others’ “unnecessary mastectomies” what those of us making our choices public could and should expect in terms of criticism and applause. I concluded that it does not matter if it is tens or millions of people who know of any of our choices, no one has the right to judge decisions of others that only impact the person making those choices. I also acknowledged that it did feel good to get the compliments. So I pause here to thank anyone who has liked my numerous posts on my story and pictures, and for all the wonderful comments. I thank women who’ve shared their non-reconstruction stories in comments on my blog. I thank other women who’ve told their stories, anywhere. Mostly, I especially thank tattoo artist Eric, who helped me with the concept and design of the tattoo, and who made that particular section of having cancer the only good days in the whole mess. Visiting him for the first time to pitch the idea and getting an “I love it” response—well if there were ever a cure for my cancer blues, that was it. Going back to get the work done, having him tell me that he was so glad I wanted to do it, because he wanted to execute such a cool idea—it was a great feeling to be the source of an excellent opportunity, to make something good out of bad. I hated being topless for 15 minutes for those 30+ days getting radiation—I hated the whole radiation experience. But lying topless for 3 hours to get the tattoo, I loved that. I cannot express in words why this is so, but the fact I hated one and loved the other probably says more than I even realize.
I stared writing this post over 5 days ago—my life got very hectic and it was too much trouble to sit down and finish. I began in a fit of pique at the response to my comment, but by now I’m not that annoyed anymore. More like, just rolling my eyes at the ignorance of it all. It is this ignorance that compels me to finish and post this, rather than abandon it, which I considered. Things may never change; people will never stop judging each other, will never stop thinking that everyone’s feelings and actions should be exactly like their own. But I don’t have to like it, and I can speak up as long as I have the energy and will to do so. If this rambling tale helps even one woman someday realize she does not have to go with the status quo if it doesn’t work for her, then I’ve done alright.
This incident inspired me to revisit P.Ink on Pinterest, and revisit my own neglected boards there (oops!). I’m not much for joining groups or picking one breast cancer organization as better than others—I am still a Cancer Curmudgeon after all—but I think I’ll do this. I asked to submit my pictures to P.Ink, and received a wonderful email informing me that they are adding a new dimension—interviews to get those of us with tattoos to share our stories to inspire others, to let others know that getting tattooed instead of reconstruction is a valid option.
Looks like I’ll get to read similar stories—the ones I asked for that kicked off this whole mess—after all.
So a couple of days ago Rolling Stone magazine asked for folks to tweet them their rock tattoos. Well, hey, I got the ultimate rock tattoo: the Red Hot Chili Peppers logo on my breast where my nipple used to be, where my tumor started. So I tweeted said tattoo to them.
Do you think it was included in their favorite rock tattoos today? Of course not. No, they can show Rose McGowan’s nipples in her barely there outfit she wore while attending the VMAs with Marilyn Manson several years ago. So they have no problem with nudity. But I have no nipple—how is that nude or offensive? Why not show my tattoo in their list of rock tattoos?
I’ll tell you why.
Because as a breast cancer “survivor” I am supposed to just wear pink feather boas and march in parades, not be sexual—as if that tattoo, with my no-nipple status is even sexual in the least (didn’t that Janet Jackson at the Super Bowl thing a few years ago teach us that all is well until a nipple slips out?). Breast cancer “survivors” are just supposed to uphold that strong warrior image, not do something like get a rock tattoo instead of reconstruction, to you know, try to look “normal”. No one wants to know or to understand the reality of breast cancer—no one wants to see the scars and what really happens to us.
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.