Rare Curmudgeonly Cheer

I am prone to shouting “this is why I love the Internet” when I see dumb stuff that makes me laugh. The meme with Joaquin Phoenix’s head progressing toward the east coast to represent the hurricane threat. A video of a bird throwing cups all over the place. Cat videos. Cat videos. Cat videos.

Oh I know, ire in comments and on Twitter, idiots sharing misinformation (“I’ll be right with you, someone on the Internet is wrong”—I love that cartoon), outrage at the slightest infraction, yeah the internet can be an ugly place.

But on the other hand, the Internet kind of saved me when I was in my white-hot-anger-at-Pink phase that October after treatment. Via blogging, and eventually other forms of social media, I learned I was not alone in my loathing of Pink—the rah, rah, the sexualization. Granted, I’m not as active as most, don’t have a huge follower base or whatever, but what little interacting I’ve done has been a comfort.

True, I’m a Curmudgeon, not particularly social, not as involved in the “community”—just my natural shyness and solitary tendencies (it’s an only child thing) at work. But, I know the community is there, and I am in it a bit. And I know there are thousands of patients who share my views and feelings. Knowing about those thousands became very important today.

I was in a conversation with a woman I run into often in my line of work—not a client, but another who provides services for my client. She is a very forward person—if she thinks it, she says it, regardless of tact. I am generally polite with most everyone, and try to keep my conversations about innocuous topics (“how about this weather?”). I tend to steer away deep discussions with people I do not know very well.

Today she brought up some NPR broadcast about how some cancer patients don’t like certain words—survivor and war were the ones she seemed to have latched onto—and how new words have been invented by patients. I think I’ve heard the broadcast she was talking about, but maybe not. Didn’t matter; I know this topic well!

She point blank asked me what I thought of these words. I calmly said I agree; I dislike most of the language in cancer. Of course, it is hard for me to not get very “deep” when discussing this topic and I found myself saying how much I hate things like “save the ta-tas”.

She said something like, “well, I think that is just how YOU perceive that phrase, that is not how—“

And I cut her off right there. I did so with great conviction.

I pointed out that yes, the intent behind that phrase is a clever, attention-getting ploy to “raise awareness”, but I am FAR from the ONLY person who dislikes the phrase. Not, by a long shot, the ONLY one who realizes that getting breast cancer often results in the amputation or mutilation of breasts—and how a slogan like “save the ta-tas” seems like it yanks support from the ta-ta-less, that it should be save the lives. No, there are thousands of us I told her. Maybe millions, tired and fed up with all the pink, with the baggage of October, of all cancer issues. I stated it as fact. It is not hard to find this anywhere on the Internet, voices raised in criticism of all the pink nonsense.

She quickly changed her tune, and pointed out that it should be about “saving the lives”. From there we progressed to a quick, but lively discussion about cancer, AIDS, patient blame.

Our conversation ended well—and perhaps I opened her eyes. Maybe not.

But for me the point was having that conviction. I KNOW there are soooooo many of us out there, loathing that old cancer-is-pretty-and-sexy thing.

No, it is NOT just how I perceive it.

Standing there holding my smart phone, I could’ve pulled up MANY articles that would prove that nope, it ain’t just me and how I perceive it.

As I tend to be less motivated to write blog posts for a number of reasons, I try to remember that every single criticizing post about all this pink crap—even if mine are on page 100 of a Google search for this stuff—are out there. The sheer number proves that NO, it isn’t just how I, or you, or anyone new to this breast cancer mess who just hates it, perceives it. When the newly diagnosed and disgusted are told, “that’s just how you perceive it, that silly slogan is harmless”—she can whip out her device and point out to all the ones who perceive it exactly the same way, and the ones who can explain why the slogan is far from harmless.

This is why I love the Internet.

(OK, OK, this post wasn’t exactly cheer, sunshine, and rainbows, but it is about as syrupy and cheery as I get. Next up, back to my regularly scheduled curmudgeon-ing.)

Because Sunday

Because Sunday

Last year National Cancer Survivors Day was over before I even knew it existed. I kind of shrugged it off. This year I was alerted to its approach via social media. And this year I’m decidedly not enthused about it.

I see the website, with tidbits like: “On Sunday, June 1, 2014, cancer survivors across the globe will unite to show the world what life after cancer looks like.” (Aside: that confuses me—is it “national”, which nation, but the around the globe quote seems it should be called international day????) Or, the tidbit mentioned on other blogs that the day is show life after cancer can be better?

Admittedly, I’m in a very bad mental space lately. Since March, I’ve had one health issue after another, starting with a suspicious mammogram that led to a relieving MRI that showed no evidence of recurrence-at least in my breasts. But after that it’s been other health issues, drugs with bad side effects, or maybe not—still trying to figure out what is going on with me. Meanwhile, I feel crappy, and I am torturing myself that all this indicates cancer is back somewhere else. I felt kind of “blah” the summer before I was diagnosed. And yes, I had that clear mammogram a mere 5 weeks before I was diagnosed with a big ass tumor that first time. So sorry, but I don’t have much patience in this process of trying to figure out my health problems without considering what I fear most.

So I’m not up to showing the world what life after cancer looks like—for me, it has been just riddled with fear, anxiety, and panic. Even if what is happening to me now is not recurrence, the fact I’m having such a difficult time tolerating or resolving new, other health issues just shows how much cancer has damaged my body—made me weaker and not as able to shake off what someone my age who has not had cancer might be able to do so easily. No, I don’t think the folks behind this event want me as a poster child for what life after cancer looks like. I wish I did look and feel like those smiling people in the survivor pictures, swimming, being active, oddly resembling ads for feminine hygiene products. Oh yes I went there.  I may feel terrible, but I can’t stop my sarcasm.

As for that word survivor, once more for those in the back row—I do not consider myself a cancer survivor until I die of something else. I do not use it because my friends with Stage IV are not “losers”, and they are too often shut out of the rah-rah survivor discourse. I’ve written about this, and other cancer labels and language many, many times, so I’m putting links below to some of the ones I remember—I’m sure I’ve written about it in other posts that I’m just not remembering.

One final, parting shot thought: I’ve been merely re-posting old pieces lately. Yes, I’ve been too tired and feeling too crappy to write much. But that is not all. I find that I still feel mostly the same about all these issues. My mind has not changed too much. I used to think if I just kept writing and talking, the conversation about cancer could change. I no longer think that. I merely hope that at some point, the world will see there is not one single, happy story of cancer, there is not one “THE way” to do cancer (I’m thinking about that TV news person who introduced the clip of the dancing mastectomy woman by proclaiming her dance as “THE way to do cancer, folks”). At some point, I hope society will understand that there are thousands (millions?) of cancer stories out there, and no two are alike. And none of them are wrong. Taken together, they are the real, whole story of cancer.

What Do I Call Myself?

The Other Other Language of Cancer

Why This Smart Ass Does Not Kick Ass

The Curmudgeon Formerly Known as Cancer Patient

Perfect


I will never call myself a ‘cancer survivor’ because I think it devalues those who do not survive. There’s this whole mythology that people bravely battle their cancer and then they become ‘survivors.’ Well, the ones who don’t survive may be just as brave, just as courageous, wonderful people and I don’t feel that I have any leg up on them.

 

— Barbara Ehrenreich 

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!

edited funny ramones

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.

source:bandlogos.wordpress.com
source:bandlogos.wordpress.com

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.

The Other Other Language of Cancer

There was a great post some time ago on Nancy’s Point called Tiptoeing Through Survivorship which, in conjunction with some other random posts made me think about a small aspect of living in the shadow of cancer. Most of the post and discussion had to do with fear of recurrence, that gut feeling that we’re never really done with cancer, even after whatever number of years out of treatment. Recurrence is certainly one of my biggest fears, but as I read the post I realized I had a bigger problem: after being about two and half years out from my diagnosis and a little over a year after completing treatment, I still feel like I am under the yoke of it, still somehow a patient.

Trying to sort out this odd feeling in my gut, I had to think hard about why I feel so unsettled and unfinished. I realize it has to do with my interaction with my oncologist. I’m not picking on him, or the others at the cancer center, exactly. I’ve mentioned before that I still do not know what to call myself. I agree with what I’ve seen on tons of other blogs: I cannot be a breast cancer survivor until I die of something else (not really looking forward to that). Having that view reveals that I fear or expect cancer to come back, especially since it seems to happen quite a bit (damn the stats, I’m just thinking about all the people I know IRL and that I read to which this has happened, and each one is one too many).

I continue to call myself a patient, because I find I am still treated as one. It irks me that every six months I get a list of appointments, without any warning or consultation, or maybe just a simple “hey you need this, this, and this, shall we schedule for you?” Every six months I fall down that rabbit hole again, in which the cancer center takes over. That was fine at the time of diagnosis, I was too overwhelmed to do it myself, had no idea what I was doing, and was lucky enough to take time off to start dealing with cancer, since it was going to consume much of my life at that point, so when I had to be where did not matter. But now I am an informed patient, almost a professional at it. I get unsettled because there is an overall “you can beat cancer and move forward with your life” air, which is great in its positivity, but in my view, is the opposite of how I perceive what is actually taking place: that I am still viewed as a patient whose cancer, treatment and health must be managed by the center, not me.  I’m trying to move forward, and trying not to be a patient anymore. And I have lots of bills to pay and being self-employed, I need to manage and be in charge of every aspect of my personal schedule, since professionally I need to be flexible for my clients—because that is how I get paid, so I can pay the doctor, hello! It’s not really a big deal, I can change the appointments, it is the way the pre-scheduled appointments just appear in the mail, like a command, that bugs me.

But scheduling conflicts are not even the worst of it. It is because of another word in cancer language that has never been used with/to me. I’m not talking about the battle language of cancer, which I dislike, or the dumb stuff people say to patients. I’m talking about the word remission.

Not once has this word been said to me. I hear it coming out the mouths of other cancer patients, or I read it loud and proud on other blog posts—the minute they get that last treatment, I see blog posts screaming “I’m in remission.”

Now, I don’t expect to ever hear the word “cured,” in fact my oncologist has said he would never say that because there is always that risk, however small, that it will return. He thinks it highly unlikely to return (but then I think about all the times I fell outside the stats). I appreciate his honesty; I don’t need him blowing sunshine up my ass. I’ve waited for him to say the word remission, but it hasn’t happened. I’ve never asked, always holding my breath during my examination, waiting for the dreaded words about seeing something that looks or feels wrong. I’m too happy to not hear those words so I just forget to ask if I am in remission.

It is not until later, when I see at random a celebratory post that I realize this lack in  my life, and frankly I get jealous. Even though I’m a curmudgeon, I’d like to have a little something to celebrate. Or at least a definitive end to this round.

My six month check-in is coming up. Damn right remission is on the list of topics that need discussion. Geez, do I have to wait until I’m at that magic five year mark?