Kitchen Table

I sit at the kitchen table today that is the same table at which I sat when I got the call telling me I had breast cancer.

I love this client that I am sitting for this weekend. The two dogs I am babysitting now are not the ones that gave me comfort during some of the worst days of my life. Both of those dogs are sadly dead; and new, young, brash dogs are in their place—keeping me on my toes this weekend!! But I miss the Labradoodle; whose constant digging of deep holes on the beach that awful week kept me busy filling them back up, so people would not trip. It was a good distraction.

I suppose I am bound to be a bit introspective this autumn, given that I approach my 5 year mark—whatever the hell that means. To me it does not mean much, but I am sure my oncologist, and some acquaintances, will look at this as some great milestone. I’m beyond another hurdle, and maybe my chances of recurrence and/or metastasis are lower now. I’d like to believe that, but all the articles I read now, citing cases of recurrence more than a decade after original diagnosis, make me unsure. I am certainly NOT jubilant or running around saying “cured!” like some fool. I consider myself lucky these days; at least my original oncologist was not a total idiot—he informed me there was such a thing as metastasis—which I knew in the abstract anyway. It seems there are quite a few Stage 4 women out there who were not informed. I shake my head in incredulity at that. Doctors who do not inform these patients should be reprimanded at the VERY least. Incompetent.

This kitchen table is where I sat a little over 2 years after diagnosis, about a month after treatment ended, when I decided to take-this-job-and-shove-it, and subsequently embarked on making my own pet sitting business official, and my primary source of income. I’m not going to get all “cancer taught me life is too short to be miserable” and say cancer was behind the decision. I already knew life was short and I was more than miserable; let’s just say being cancer-fatigued makes that sort of thing easier. You know, the kind of tired beyond caring about anything. It has not been easy, in fact most of 2012 was incredibly difficult—as difficult as my cancer months (Oct 2010-Jan 2012). But I have NOT regretted it.

Psychologically I am not totally healed from either of those incidents; but I am so much better now. Maybe a little better with the cancer stuff, if I am to be totally honest. Thanks to finding like-minded cancer patients online. Thanks to some online friends not in the cancer realm, but whose help was invaluable in so many ways (thanks @angel-of-malahide and @andlifeisgrand). And thanks to some in real life folks, who have mentored me and made me better.

Lots of ink is spilled about “trigger warnings” and coddling of young Americans with such warnings. Are we too fragile to be triggered? I cannot afford such fragility. I need these gigs for my income, so I take them, even if the client’s kitchen table brings back horrible memories. I’m sure most cancer patients don’t avoid places where they received their news—especially if it were their very own homes! But yes, I am sitting here and remembering. But it is not all bad. It just is a timeline that I reflect upon as I approach a milestone. I hate the saying it is what it is because it is soooo overused. BUT, hey, it is what it is. I got cancer, I quit a job, and here I am, for better or worse.

I admit this kitchen table has brought up some unpleasantness, some introspection when I’d rather be looking at cat videos (or all those other internet things that distract me and make me “waste” my time—but if I’m laughing my butt off, is it really waste?). I knew it was coming. I see my “new” oncologist (well, I’ve seen him a few times since early 2014, he is just new because he was not my doc during treatment) in a few weeks. As it will soon be 5 years, we can talk about just yearly visits; not these twice a year treks. I’m all for that! I HATE all doctor visits—even my poor old optometrist, who is really not so bad.

Good. Bring on the once a year. I am more than ready to get over this next milestone. Here is to hoping that new disasters (recurrence/metastasis) do not await me.

Take It Easy, Man

This post is in praise of the nameless cancer patients who don’t have the energy to do much of anything during or even after treatment.

Feel-good stories run rampant on the internet, local news, and fake news shows like those idiot magazine and morning shows. A special subdivision of feel-good stories are the stereotypical cancer stories. You know the type: the cancer patient finishing school, running a race, or doing some event or another, all while juggling treatment and the rest of life. Sometimes these exceptional cancer achievers are featured in ads for various cancer non-profit organizations, and I’m again reminded of the saying I encountered when I first moved to CancerLand: “only the positive stories make it to the podium”. Lots of folks like to post these stories, calling them powerful or inspiring.

Looking back on my days of treatment, I am glad I was not very connected with social media. I was lucky to be surrounded by people who encouraged me to listen to my body; if I was tired, take a rest, don’t push myself. I look at all these stories of someone putting off chemo to run a marathon and think, “I could never do that”. Or I see the governor of my home state posing with his bald head on the steps of some government building proclaiming how great he feels and I think, “well, it has just begun for him, the fatigue and other side effects are cumulative, ask him again in a few months”. Then I feel guilty for being so self-absorbed, for being tired, for comparing myself to others. Even now, nearly 5 years out from diagnosis, when I am done with my work day, I sit down and almost immediately nod off. (This is why I get so behind in reading and writing.)

It is natural to compare ourselves to figures we see in the media. Reams have been written about this topic, how young girls and women see images, cartoons or real starlets, and are set up trying to reach an unachievable standard. I enjoy seeing the attempts to counter the impact on the internet, campaigns about self-acceptance. Too bad that was not around when I was young. These images still impact me as I’ve aged; I mean I know that beauty product being shilled by the actress decades older than I—yet her face has less lines than mine—won’t really help me, but I consider buying it anyway. My point is, any media-anointed she-ro, whether a cancer patient or otherwise, is meant to inspire others to be more like the she-ro, and if that is unachievable, well, I don’t know about other folks, but sometimes I just wind up feeling like crap.

I’m a big fan of the Coen brothers’ “The Big Lebowski”, and The Dude. While I’ve never decided to follow Dudeism (the sort of philosophy posing as a religion, or vice versa, based on the character), I cannot help but think some of its ideals should be embraced by cancer patients. Dudeists are trying to reach their version of Nirvana, which is just taking it easy, man. Take a nap! Abide!

No this isn’t some Dudeism recruitment post—as I said I don’t really embrace it all myself. But I do think there is some wisdom in taking it easy. This is in no way meant to knock those cancer patients who push themselves, run races, execute events, and all that. All I want to do is say hey, if you are tired and need a nap, for goodness’ sake, take it!

Media appointed cancer s/heroes create a standard or ideal that it is not necessary to reach, no matter how many times those less-than-supportive types around us might think. While, again, I was lucky to be surrounded mostly by folks who told me to rest when tired, I did encounter many folks (and still do) who see the image of the smiling, kick-ass woman (an image I have long fought, see Take the Mythical Image of the Strong Warrior Breast Cancer Survivor and Bury Her Once & For All) so omnipresent in breast cancer culture, and wonder why I’m not wearing a feather boa and marching. No thanks, I will put on my bathrobe, pour myself a beverage, and have a seat while pondering if the rug really ties a room together.

And I raise that beverage in honor of all the other cancer patients who also decide to take it easy, man. We may not get on TV, won’t get any media praise, but we are doing cancer right for ourselves.

The Dude

Burden of Gratitude

Long before I got cancer, I worked with a woman really into positive energy, healthy eating, and so on. She and I, along with other co-workers, started reading “Simple Abundance”. One daily task suggested by the book was to make a list of 5 or10 things one is grateful for. I found this very easy—I still do it in a limited way. Not a day goes by that I do not think of at least one thing for which I’m grateful, unconsciously, for half a second. It’s just habit.

Shocking, coming from a self-professed Cancer Curmudgeon, I know. But it IS true, I am able to do those cliché things each day—stop and smell roses, focus and be present for a few moments—all that crap. It just so happens my being in the present moment tends to have loud guitar soundtrack, which I’m sure is not what most would consider a peaceful moment—but hey, it works for me. That is a post for another time. The point is, as much so-called negative energy I send out via this blog (I don’t think I do, I’ve merely been accused of this), I’m much more balanced than I seem.

As I’ve said MANY times in various posts, including my About section, I AM grateful to be alive, for the treatment that stopped my cancer, for having an easier time of it than so many I seem to know, to still be in the 70% that has not yet had a metastatic recurrence. See what I did there? Put a positive spin on a terrible stat; see I can do it too!

I am even begrudgingly grateful for all the Pink cult mess that made the research and development for Herceptin possible. I’m all too AWARE (I hate that word) that having the “popular” cancer, the better funded cancer, improves my survival odds.

And there it is: this is where gratitude begins to feel like a burden.

I’ve had a few lightning bolt moments of being struck by this feeling of gratitude as burden over the past few years since I started this blog. I remember watching Lisa Bonchek Adams, Gayle Sulik, and Dr. Love on Al Jazeera a couple of years ago, and seeing the few tweets popping up along the bottom of the screen about the oversaturation of Pink. A few tweets seemed fed up with the ribbon on everything, but the ones that bothered me were the tweets that spoke of the success of the ribbons (a show discussing them is proof of their effectiveness!). The implied message was, don’t knock the ribbon, it worked because now we are aware and anything that brings more awareness is therefore good. There was also the misguided belief that Pink on everything has solely been responsible for breast cancer patients not having to suffer in silence anymore (see Breast Cancer Action’s history lesson).

I get lightning bolt moments of the burden anytime I scroll through comments on ANY criticism of Pink crap and/or sexy awareness ads. It is inevitable that at least one person will angrily comment about the lack of gratitude the breast cancer patient writer is expressing in the critique. The appearance of such a comment is more predictable than the best weather/economy/whatever forecast. And I’m not even going to go into some of the blog posts and articles that have appeared tsk-tsk-ing those of us who criticize Pink. I guess it is just a backlash to the backlash. Again, there is the message, said directly or implied, that anything that brings awareness is inherently good.

(Gonna pause right here and say awareness is not enough, I don’t want to go into that issue here, many others have, and I said my piece about it in Some Word Problems last year.)

But a really major lightning bolt moment is an article in an Australian publication from about a year ago, that I can no longer access, but I’d made notes to myself on it in an earlier draft of this post. The article was about the competition for funding and attention between the different cancers, and how breast cancer gets the most money BY FAR, although it was not nearly as lethal as other cancers. A woman interviewed worked for a breast cancer charity and recounted a story about an interaction she had with some big executive. He told her point blank that his business partnered with her organization because of the body part. He said something kind of crass, like if his wife got breast cancer it would be really hitting where he lives (sorry, cannot remember exact quote, just remember the “where he lives” part).

How many other partnerships were forged for the same reason? Probably more than I want to know.

Yes, I know I’ve benefited, directly and indirectly, from money funneled into breast cancer organizations because of this mentality. Whether it was an executive motivated by selfishness (I am GRATEFUL I am NOT his wife), or one of the local boobs and brews events, I’ve had the best/latest treatment, and received some useful care packages bought with funds raised by things like this. I repeat I AM GRATEFUL for all of this.

But how do I reconcile my gratitude for my benefits with my disgust with the methods used to buy them?

As I’ve mentioned in other posts, sometimes my blog is just me trying to work through my thoughts and emotions about cancer. I have not been able to work through this. I cannot reconcile my gratitude with disgust. The only way I’m dealing with it right now is by knowing that I am capable of experiencing numerous contrasting feelings at once.

When I started writing this post, I wondered if anyone else found gratitude to be a burden. I mindlessly Googled around one afternoon. I ran into the usual stuff—blogs from the self-help set, a quote or two from a historic figure. I stumbled on a HuffPo piece from a literature lecturer about gratitude being used almost as a weapon of sorts in some Austen novels. This analysis of a couple of novels actually made sense to me, in a VERY loose way. I don’t think the “you complaining breast cancer patients should just be grateful” finger-waggers are exactly viewing us as inferior, lower-class people (such as in the Austen stories, where the poor, unmarried girl has to benefit from the charity of society people to catch a husband and the stability of marriage).

But there IS a whiff of superiority in the attitudes and tones in these comments. Sometimes I get the impression the obligation of gratitude is being wielded like a ruler in the hands of an old timey teacher. And that ruler is being used to thwack the fingers of naughty breast cancer patients daring to challenge the status quo. And I don’t mean just patients who are blogging and writing articles. I mean anyone who has ever dared to grumble quietly among friends and family, and received that rebuke of ” be grateful” in return.

Perhaps it’s all in my mind. It does seem linked to the subtle, indirect blame ALL cancer patients get. Like: “you didn’t eat right/live healthy/think about sunbeams all day, so now you have cancer and you should just be grateful some smart people invented treatments no matter how those treatments were developed and you have no right to complain about anything because at least you are alive for one more day, and that should be good enough for you.” (Not going down the blame road today, either—see my old post Did You?)

The feeling of gratitude should NOT be a burden; that’s not what all the self-help mumbo jumbo is about. Gratitude is supposed to help one on the path to happiness. Well, that’s not happening here for me. What should I do about that? I mean, besides trying to work it out here on this blog?

I still do not really know. But I do know this: I felt increasingly disturbed by the Pink (by that I mean the be a happy warrior rah rah stuff, the sexualization, the pinkwashing, all of it) as I began treatment and hit a zenith right after treatment ended. I felt this disturbance before I ever found others with the same thoughts via social media. Every single day tons of women get this diagnosis. Some of them will go all in to embrace the Pink. But MANY others will have an experience similar to mine.

I don’t want my experience for these future breast cancer patients. Just because it “worked so far” (again, that is debatable, since, you know, there is still all this cancer out here), does NOT mean it will continue to work. Some would say, if it ain’t broke don’t fix it.

But guess what? It is broken. When gratitude makes me feel like shit, something is definitely broken.

What Is My Psychological Damage?

Warning: controversial topic, I’m not taking much of a stand, just trying to work out my thoughts and feelings here, so be gentle in comments to me and to others.

“’Cause I’m just a girl, a little ‘ol me”

-“Just A Girl”, by No Doubt

“Oh I’ve had it up to here” Gwen Stefani sings in that old song. What I’ve had it up to here with is the use of “needless worry” and similar phrases as a reason to advise against screenings (annual or additional), or a reason to not inform women of breast density.

As I’ve said many times on this blog, I am not in the “a mammogram saved my life” camp—in fact that is one of the clichés of cancer driving me crazy lately. I hate the hyperbole of the phrase. I actually do understand to a degree when advocates point out that mammograms are not reducing the number of breast cancer deaths. But I have reservations about eliminating routine screening, and BIG reservations about not informing patients about density and potential problems, regardless of whether it can impact them or not. But whenever the needless worry reason is invoked, I stop reading/listening, and therefore am not absorbing the information advocates are trying to present, and I am not persuaded.

Don’t get me wrong—cancer is an emotional topic, like any illness or anything that severely alters life. And I have an emotional reaction to the emotional issue raised. I’ve started this post so many times in the past few months. I see yet another article about the uselessness of mammograms or over-diagnosis and start writing, but my emotions get in the way of making my points. I’m trying again, and hope I’m articulate. It seems this debate pops up every few months—whether it is this or that study, with whatever slight difference (I’ve written about that before).

I’m not suggesting worry and other emotions should not be brought into the discussion—my problem is the tone in which they are brought up, and the fact that the anxiety is used as a reason to discourage screenings or informing patients of density, right alongside data and stats showing mammograms don’t improve death by cancer rates or extra screenings won’t help those with density. I’m hearing: “tests are scary, so don’t worry your pretty little head”, and for me that cancels out the numbers and facts proving screenings are not as effective as we’ve been led to believe.

In many ways I’m the poster child for the ineffectiveness of mammograms and why routine screening should cease (or at least my cancer experience is on the poster). Propelled by my aunt’s diagnosis of Stage 3 cancer in August 2010 (and her experience was complex; including numerous tests the previous year, and a wait and see suggestion, but hers is not my story to tell), I asked for a mammogram at age 38, September 2010. I got an all clear, and 5 weeks later with an inverted nipple, I learned I had Stage 3, an oblong tumor approximately 5×6 cm going from nipple to almost the chest wall, with some spread to lymph nodes (that spread had not been made clear to me back then, I recently learned about it). I get very tired of the word “over” (as in over-diagnosed, treated, tested), and I think wow, I was UNDER-diagnosed. But really I was misdiagnosed. A false negative, I guess. So, in short, routine screening—not that great for me, and I have no call to defend it.

To be clear, it was not an issue of the technology not displaying the tumor. That old analogy of screening dense breasts being like trying find a snowball in a snowstorm also fails in my case. For me, no storm, only snowball. The tumor was dismissed as a density by the human looking at my images (my oncologists punt on this—they both say I have average age related dense breasts—not actual dense breasts), but I was not informed. I did not even know the radiologist wrote on a report not given to me that he saw a dense left breast until I confronted my oncologist in 2013, long after treatment ended. Did the radiologist hear all the rumbles about over-diagnosis, and all the needless worry, and decided it wasn’t worth having me worry my pretty little head about it—when clearly I had cause to worry? Was this debate raging in 2010? How the hell should I know? I didn’t read this stuff back then, I thought breast cancer was an older woman’s problem. And even then I figured I’d be one of the other 7, not 1 in 8 (yes I now know I was actually 1 in 233 or whatever other large number applies to the 30-39 crowd, I’ve seen a few conflicting things). In short, while I was trying to be proactive and dutiful, I did not really have any concerns. But I am sure some would consider me a victim of the awareness campaigns’ fear-mongering practices used to drive women to useless mammograms, simply because I went.

The eliminate screenings advocates would point out that not being informed made no difference to me. I developed symptoms, I sought medical attention, and nearly 5 years later, I’m still here, bitching about everything. I was saved 5 weeks of worry—gee whiz, aren’t I lucky (yes being sarcastic).

The recent Newsweek piece says, “Not every woman with dense breast tissue should be subjected to additional screening tests, which can be psychologically damaging and contribute to unnecessary health care costs…” and I just cringe. The latest to invoke the “needless worry and anxiety” cliché, it just sent me over the edge. I have a clear memory during the first few awful infusion weeks that included getting the Red Devil. A woman decided to tell me about that one time a worrisome mammogram forced her to go back for a biopsy, how awful those days of waiting were for her, until thankfully she learned she did not have cancer. Obviously, this did not sit well with me. All I could think about was how lucky she was, for her worry to be revealed as needless.

I hate that I think this way. I hate the disease comparison/competitions that are so prevalent lately. I catch myself thinking “I WISH I’d had a false positive” and sternly rebuke myself for sounding like that cancer patient in the UK Pancreatic Cancer PSA (“I wish I had breast cancer”) that inflamed so many breast cancer patients last year. (Want Attention? Just Say Breast Cancer.) But I am envious; I do wish I’d had a false positive instead of cancer because, well, I wish I’d never had cancer. I know I sound like I’m diminishing the fears of others, I sound not so compassionate–I’m working on this—I’m human, not perfect.

I think I have psychological damage, but the opposite kind of damage that all the hand-wringing is about. I worry because I didn’t worry back when I had reason to worry (am I making up for lost worry?). I do not trust tests, even when I have them and the results are showing no signs of cancer. I mean, I’ve heard that bad joke before, haven’t I? You’re fine—no, wait, no you’re not! Some say the government should not legislate the doctor-patient conversation. But having been a patient with the experience of finding out bits and pieces during and after treatment, well, I am left distrustful, doubtful, and faithless in most medical professionals’ abilities. That is just how it is for me. One big mistake was made about me, and I am unforgiving and taking it out on everyone else I guess. So when I read the hand-wringing about needless worry, all I can think is, “man, I got nothin’ but worry now, how about we trade, I’ll take some of that needless worry”.

This ramble is just to explain how I arrived at this point of view now, unsettled by use of emotion as an excuse to withhold information from women. I’m sure other bloggers can tackle the patriarchal medicine issues I think, and others might think, are going on here. A few months ago I caught a re-run of “Designing Women”, in which a character was encouraged to get a second opinion and biopsy. The first doctor was framed as a villain—accused of telling women to let him do the worrying for them. While I doubt we are on the path back to those dark ages (the 80s!), there is still a…I don’t know…”whiff” of “let the omnipotent medical professionals handle everything” when I hear an argument to withhold information—however useless—from a patient.

I also realize that far reaching public policy should not be influenced by the individual, stereotypical “personal cancer story”, just like my boring version I tell here. What happened to me was statistically rare (or so I understand and I do not think singular), so what is the use of telling every single woman under 40 about densities and risk. None, I guess, except to keep 1 in 233 women from experiencing the same sucker punch I did. The push for laws informing women of density was beginning while I was in treatment. I became dimly aware of it, having first ever heard the phrase dense breasts in the daze-filled first days of cancer, when I weakly asked how on earth my first mammogram was clear, what with all this cancer I suddenly had. All I got was the lame shrug and “young women have dense breasts” line, absent of further explanation. I still hold resentment—psychological damage, if you will—about that.

I want to jump on the “eliminate needless screenings” bandwagon, since I run away from the “mammograms/early detection saves lives” chants. But as long as that specter of “don’t let these emotional women worry so much” remains in the arguments, I will not be listening, much less agreeing.

Shoes and Vigilance

Cancer has made me hate clichés and metaphors (I’ve got a big rant in the works about THAT). But, I admit clichés can be useful because sometimes they are just so accurate, and I find myself using them in spite of myself. The cliché that has ruled my life for the past several years is “waiting for the other shoe to drop”.

I’ll admit up front it isn’t just cancer that made this cliché so dominant in my life. Prior to and during cancer I was in a situation where I was always waiting for the drop of that other shoe. Some detail or whatnot I missed months ago had a way of biting me in the ass much later. By the time I was diagnosed with cancer, I lived constantly on the edge of my seat, waiting for bad repercussions of I-don’t-know-what. I kept vigilant, couldn’t make the smallest decision, without over-thinking it, looking for all the possible outcomes that could turn bad. And yet I still seemed to miss something, and I always felt like I didn’t even know what I was looking for. Too many times a detail would seem benign, only later to be revealed as THE ONE THING that I should’ve realized would explode months later. This repeated experience paralyzed me into often just not making decisions at all—which produces yet another horrible outcome. So you can see how a cancer experience can intensify living in a constant state of red alert. It is an exhausting way to live.

After treatment ended, I extricated myself from that horrible situation, but I remained in a state of constant vigilance for a loooooong time. As my “mythical” 5 year mark approaches (snort of derision), I have relaxed a little bit. I’ve even relaxed in spite of the awful mammography-to-MRI scare last spring (see Complicated Relationship with Hope and Scar Tissue). But I guess it is scanxiety causing me to get a bit tense right now—annual mammogram is tomorrow.

I realize it is not just in terms of cancer that I have this motto of constant vigilance—like Mad Eye Moody in the “Harry Potter” books. (Didn’t he always used to sternly tell the students: “Constant Vigilance!!”? Been a while since I read the books.) I find that when I start feeling all is right with the world, when I think, yeah, I’m “happy”, I get a nagging feeling in my stomach—something is bound to go wrong, that shoe is gonna drop. I chastise myself for not being hyper-alert at all times. I worry over every little thing I said to every single person in the previous week. Or worry that the funny sound I noticed in the car a few days ago is the first sign of my engine’s impending explosion (sometimes my imagination goes to the fantastic, what can I say?). Ugh, why was I not vigilant? Why did I relax? Everything is going too well and it can’t last.

Now, I am sure this ramble proves I’m “stressed out”, and invites the gentle rebuke that I should relax—and some folks think stress causes cancer. I don’t even wanna go down that rabbit hole today—because in my mind that is just another way for me to blame myself for getting cancer (I put myself in a situation of greats stress 10 years ago and did not get myself out, thus causing all my own stress, so I got cancer, and deserved it—ugh, please, don’t lecture me, I can do that all by myself).

But what the act of writing this reminds me is that I learned so many lessons from cancer—but not the kind that get written up in feel good stories on cancer treatment/organization websites, or local and national newspapers touting the newest cancer hero. I learned lots of bad stuff—someday I will write Cancer Curmudgeon’s bad cancer lessons handbook, I swear! But specifically today I’m thinking of how cancer taught me I’ll never be safe again. I guess if I were to get all philosophical, I could realize that bad stuff happens and everyone dies, safety is no guarantee. (Again, I don’t want to hear trite tidbits like I could get hit by a bus any moment—ugh, so overdone.)

The concept of control is a post for another time, not today (though I have flirted with the topic in a past post). I do try to control things that are out of my control; that has been a lifelong struggle. I’ve always been a conservative (not in the political sense) person, careful with risk to the point of avoiding it at all costs, especially money—given that my parents were and remain financially strapped—and we all know that cancer is an economic disaster (no I don’t like gambling, how’d ya guess?).

Two years ago I foolishly put my phone in pocket which led to the dang thing falling in the toilet, getting utterly ruined, and I had to go through the annoying process of waiting and replacing. I vowed to be forever careful, to NEVER let something so stupid happen again. And I was successful until a few days ago. I allowed myself the luxury of a pedicure—only the second in my life—had the phone in my lap, leaned forward, and boom! Phone slid into pool of whirring water intended for feet. I did all the “right” things (put in rice overnight) but the charging apparatus was ruined, and yep, I just got my replacement and I’m going through the gymnastics of re-setting it all up without the ability to import anything from the old dead phone. I’ve been kicking myself for my lack of vigilance the past few days—how could I let this happen?!

So today I must talk myself off the cliff. My lack of vigilance about the phone is not some cosmic sign that my lack of worrying about recurrence will result in disaster tomorrow. I don’t believe in that “cosmic” stuff anyway.

I just have to keep telling myself that.

Looking At Pictures

So my most recent posts have been about the spring runs/walks/arts events to benefit local breast cancer organizations. Last week was the annual Komen on the boardwalk at the beach 10 minutes away from my hometown. The weekly freebie newspapers just came out yesterday and the pictures were all over the covers—bright pink splashes on the front pages.

Usually I avoid those rags of local “news” this time of year and in October because of the breast cancer celebrations coverage. But I did pick a couple up this time. I stared at the picture of the survivors’ parade. Every single woman wore a bright pink t-shirt with a lighter pink ribbon on it, the word survivor under the ribbon. A few women wore pink wigs, and/or pink boas. One woman wore a boa/necklace/garland of paper pink ribbons of various sizes. I realize that if I thought such races/walks were a useful pursuit (I do not), if I called myself survivor (I don’t), if I embraced the Pink (I really, really don’t), I’d be in that survivors’ parade wearing that t-shirt. So why aren’t I?

It is strange how humans behave I guess, what we believe, what social groups we join. I just had a conversation the other day with a client about how people start to take on the beliefs of those they live near and interact with (we were discussing how both our parents were becoming more conservative and saying offensive things—obviously things they’ve heard from other folks they interact with now that they are out of the work force—very ugly stuff). But I wonder what made me reject all that Pink stuff that is the norm in my region. The others in the small support group I attended (for people diagnosed with any cancer under the age of 40) were mostly disdainful of Pink, a few loved it. But all the major breast cancer groups that organize and/or benefit from these events recite the Pink, stay positive script, which is why I avoid them.

I stared at the picture of the women in pink shirts on the cover. I cannot imagine loving any ribbon so much as to wear a garland of them. I looked at pictures further inside the paper—some women in pink pants and hats and…just covered in Pink! Fortunately, no panties and bras pulled on over bike shorts like that other beach event last year. But still.

In the years from diagnosis up until last spring, these pictures filled me with disgust. All I could think about was how Pink and the stay positive pressure had harmed me. (For those who’ve not read my other posts, in short—the Komen dogma of get your mammo for early detection did not work for me, and the be positive at all costs made me miserable until I figured out I’m Allowed to be however I wanted—it’s more complex, this is the Cliff Notes version.)

I’m a bit more detached now. It makes me a little sad I guess—I know my natural social awkwardness, and trait of playing devil’s advocate, or desire to go against the grain are a few of the reasons I do not join the Pink parades. I think it would be easier if I would just go with the flow, if I could. But I can’t.

Always questioning everything can really suck sometimes.

But in an uncharacteristic move from someone calling herself Cancer Curmudgeon, I take a moment to be grateful (no griping—what???). So what if I can’t walk in that Pink parade? I found other bloggers that have many similar opinions and I found solace there. I started—and continue—blogging to keep in contact. For one who does not make friends easily, I began to do just that. I even began to “friend” some on my personal Facebook—waaaay out my comfort zone. Too many bloggers and folks to list for fear of missing someone, which would mortify me if I left anyone out and offended in that way.

Sure the women in the pictures of the parade look like they’re having fun. But I’m having fun too. And I have peace. It may not seem like it when I go on rants or give in to the anxiety—but I do have it. Because I know others feel the same way. At some point a post about this value of what others would call “complaining”—and a ponder on that word—will be written. Right now it’s enough to know I’m not the only one.

“Walked out this morning
Don’t believe what I saw
A hundred billion bottles
Washed up on the shore
Seems I’m not alone at being alone
A hundred billion casatways
Looking for a home”

“Message in a Bottle” by The Police

The Next Time Round

Sometimes I forget that there are actually people out there who do not understand that metastatic breast cancer is usually fatal. Laurie Becklund’s video, in which she mentions how someone gave her a “get well” card upon hearing of her metastatic recurrence, reminded me of an upsetting incident that happened last summer. (For anyone who does not know, Becklund died Feb. 8.)

I’ve written often about the ever present fear of cancer, that I’ll never be “over” cancer, and how that sometimes that fear is a bit more pronounced. Last summer, after a “suspicious” mammogram that led to an MRI, and various other symptoms, I was in a state of higher anxiety about recurrence than usual. When discussing the fear, someone said to me that it would not be as difficult the second time round, because after all, I knew what to expect.

I was unable to respond. In the back of my mind, I was afraid I would sound like my usual self, always determined to see the bad side of a situation. Now I could kick myself for that. I think everyone views me that way anyway, even when I choose not to express my “negative” thoughts. But more importantly, I regret not taking the opportunity to explain what causes me fear. And yes, this person, given their profession, should’ve known better than to dismiss any fear.

It is so odd that anyone would think a second round of cancer would be easier, simply because a patient has been through it before, and knows what to expect. I want to say “yes, I HAVE done it before, I know what to expect, and that is precisely why I am so anxious—because it was horrible!!!!” I remember reading an article while in treatment, written by a caregiver, who said that over time, all the memories of chemo and its awful side effects fade. True, I don’t really “remember” how awful I felt, only because I’ve never felt so bad/sick/tired before or since. But the knowledge that it was the worst over-a-year-long experience of my life has not faded at all.

At any rate, recurrence will probably not be much like the first time round. I expect there to be variables. If it is a simple, early stage recurrence of the same cancer in the same place, I’d have a mastectomy—very different than the lumpectomy I had last time. That’s just for starters. There would be no radiation. And what drugs would get used—and would they impact me differently, given my body is not as healthy as it was going into cancer that first time? Those are just the thoughts off the top of my head.

The biggest issue is that recurrence can be in a different place, because the cancer would have metastasized. That is a completely different scenario. Metastasis is real possibility, and it troubles me that 1) some folks refuse to acknowledge or are simply ignorant of that and 2) treatment and outcomes for metastatic cancer are NOT comparable to the first cancer experience. Sometimes I wonder, with all the positive survivor culture that saturates everything, if some people mistakenly took home the message that breast cancer at least, never causes death.

For me, the fear, obviously, is death. Right now, even though I’ve had cancer, I can hang on to the idea that maybe I won’t get it again, and that I will reach an old age and die of something else. Metastatic cancer would put limits on that idea. Would I have to abandon the idea of reaching age 80, 70, 60, even 50?

Yes I’m aware of the anecdotes, of the many women who have lived well beyond that five year from metastatic diagnosis mark. And I am aware that many would prefer not to be viewed as a dead woman walking—would prefer to concentrate on living. I’m not discussing that, merely stating that I know such a diagnosis would severely limit the likelihood of reaching old age. Because I think there are so many who do NOT know this.

I do not know how I would handle a metastatic recurrence. One of the socially UNacceptable lessons I learned from cancer is that it is useless for me to say I’d know what I’d do or how I’d feel if a situation were different. I do know that I do not want to know.

I think this knowledge of limited life span should be enough for anyone to understand why a recurrence is such a huge fear, such a cause of anxiety. It should also explain why I cannot count on previous experience. The idea of “you’ve done cancer before, so you know you can do it again” concept does not apply to a metastatic recurrence scenario—at least for me.

Of course there are many other differences that I am thankfully only aware of because I read other bloggers who describe them. Differences like, frequency of doctor visits and scans, being in treatment permanently, switching to a new drug every time the current one stops working, and I’m sure there are more. How can these things even compare to that first cancer experience? For me, they do not.

Even worse, the incident last summer reinforced for me the awareness that most people do not even understand that treatment for Stage 4 (when a cancer has already metastasized by initial diagnosis—see note below) is vastly different for those of us who “caught it early”. The experience is different for ALL the “metsters”, regardless of if metastasis was found the first, second, or third time round. Thankfully I am not in that group, so I do not have the right to try and describe it. I’m guessing anyone who reads my piddlin’ blog already reads blogs by those who can articulate the experience. (Anyone who has other blogs or sites communicating the metastatic experience, feel free to leave links in comments, if you are so inclined).

I wish I’d brought up all these points to the person who tried to assure me that since I’d done cancer before, I knew what to expect, and that should reduce my anxiety. It only heightened my anxiety. That person is no longer in my life (for other reasons). I’ll make sure all those who do remain in my life, or enter it in the future, understand that the next time round, would not be the same for me, at least. Metastatic cancer is a completely different animal in CancerLand, and I’ll try to do my part to make that clear to those who just do not “get it”, to the best of my curmudgeonly ability.

Note: See here for explanation of difference between Stage 4 and metastatic breast cancer. Also find in this article information about how statistics and data do not accurately reflect metastatic recurrence. Another note about deaths not always being attributed to MBC: “Another quarter-million Americans are estimated to be waiting in the wings. I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.” from As I Lay Dying by Becklund.

Addendum: I rarely write about MBC because I can only speak for myself, and only write from my POV–so I never want to come off as someone worried & whining about what MIGHT happen, when those with MBC are worried about what HAS happened. So I hope everyone with MBC who reads this understands that is the spirit behind the post.

Uniform

Once upon a time, while walking a dog, I ran into an acquaintance and he introduced me to his wife. During the chat, it came up that I was a “survivor.” No lie, her immediate response was, “but you aren’t wearing your pink!” Actual quote—those words are seared into my brain.

I swallowed my irritation and said something inoffensive about how Pink does not really represent breast cancer in my opinion.

We left it at that. These are acquaintances after all, the kind of people to have polite, how-about-this-crazy-weather kinds of chats with; it can be hard to have deep conversations as a dog walker while trying to control barking, pulling, wriggling pets on a leash. I do not think my words about my disdain for Pink went far. I went on with daily tasks, and the incident haunted me the rest of the day, hell, it haunts me now. It was a one-two kick in the gut, that reaction, that statement. First (BAM!), the assumption that I had that particular cancer, and second (POW!), the assumption that as a result of having that cancer, I am obligated to don the Pink uniform.

Is it any wonder folks with other kinds of cancer, especially gynecological cancers, are so sick of breast cancer? I stood there, my female-with-cancer self, so within a split second the assumption was made I had breast cancer, because of the loud messages of Pink that breast cancer is the only one worth paying any mind.

To be fair, breast cancer is way more common than any other cancer except lung, and no one ever assumes lung cancer, at least for a younger woman with no cigarette stuck in her lips. So yes, most people are going to safely bet the favorable odds and assume a female “survivor” had breast cancer.

OK, I can maybe give her a pass on that assumption. But the second punch, aaarrrgghhh.

I had breast cancer, and therefore I MUST wear PINK every damn day? Really?! It was like, not only MUST I join in the Pink army, I have to SHOW IT by donning the uniform? Do folks really expect that?

Here’s the punchline to this story: the woman is a semi-retired nurse—who teaches intro to nursing classes at a local college. So I—unfairly, perhaps—expected more and better. I expect any medical professional to be a bit more savvy—would not their experiences, even for non-oncological nurses, inform them that there are all kinds of cancer? Don’t they see a more varied swath of patients and ailments? Am I really the first breast cancer patient this nurse encountered who disliked Pink?

This incident took place about a year ago. I did not write about for a few reasons. I was very busy, and in the few moments I did have to write a post, I was often distracted by other topics. Plus, I figured most breast cancer patients who are not fans of Pink have similar stories.

So why write it out now?

I keep remembering the incident because to me it seems almost like a fable or tale, telling what it is like to be a breast cancer patient–except it really happened. And the message of the story is simple: this is what the general public expects of breast cancer patients. We are to join the army, battle, and don the pink uniform—there is no room for different opinions, questions, challenges, or anything. Patients who do not conform just befuddle others. Those of us here in Cancerland know that there is no one right way to do cancer, but the general public does not understand this.

The recent months have been full of celebrity cancer stories, setting standards for ALL cancer patients, and much has been written about them—and yes I’ll contribute to all that chatter (when I get a chance to think and write). I know I will refer back to this story again. While I and others know it is acceptable to do cancer differently, that is not what the story on TV tells. And so, we are expected to don the Pink Uniform literally and figuratively.

Some Word Problems

I was fairly lucky this Pink season to not be too irritated by all the Pink products and events. Sure I ranted here about one particular subset of events, but mostly I’ve been successful at just turning the page, clicking away, changing the channel. But I’m a Cancer Curmudgeon, so of course I’ve found something else to be annoyed about.

What has been plucking my nerves over the last few weeks is the repeated use of certain words and phrases. One certain word, when attached to other words, has been especially upsetting to me pretty much all year. That word warrants its own special, lengthy, likely unpopular post. Hopefully I’ll get around to it soon—time and energy have not been my friends of late.

So here are some words/phrases that made me weary last month:

Awareness

Well, duh.

Many bloggers have written excellent pieces on the need for education rather than awareness, that full awareness has been reached when the NFL wears Pink, and so on. I agree, and have little to add. The word is meaningless to me.

I guess I especially hate the word awareness when it is used in arguments against critics of Pink—hey, don’t criticize pink ribbons because: look how successful, we can talk about breast cancer without shame! I’ve said this before: I don’t wanna talk about it; I WANT TO NOT HAVE IT.

What is the goal of awareness anyway? From what I absorbed from Pink propaganda prior to diagnosis, it seems to be that one simple message: get a mammogram to detect cancer early, fight hard and put on a smile and the pink uniform, and then survivor status is achieved, and it is all over—all is well. My experience—being 1 in 233, not 1 in 8 because I was 39 years old, being ER/PR negative and HER2 positive, having a false negative mammogram, now knowing the likelihood of recurrence—just did not fit into the story. I felt, and still feel, I was spectacularly unprepared.

Hindsight being what it is, I certainly wish I’d known then…ah, you know. It would’ve made the frenzied time of diagnosis a little less confusing, trying to learn so much backstory, UNLEARNING the messages I’d swallowed each October. Plus, I don’t think I’m alone in thinking that the early-detection-is-the-best-shot-for-survival is not good enough. I want better odds for not getting cancer again, even after that magical 5 years out number. I want prevention for everyone. Need I say more? For all the hoopla of awareness, I still see breast cancer as pretty grim (duh, I’m a curmudgeon after all).

The whole story is not being told by the mainstream Pink information distributors. I admit, before I got cancer, I did not “buy it”, but I certainly did not do anything to find out what was not being told. I’m not sure most people are able to understand all the little details about breast cancer—people like sound bites and the whole story of cancer is too complex for quips. And certainly many are unwilling to know that breast cancer is anything but the festive version as seen on TV (eat right, exercise, blah blah blah to help prevent it, curable and never the metastatic kind that leads to death, and chemo is a party). But good grief, even if all the little details don’t fit into a perky slogan, don’t pretend that breast cancer is just a singular disease with a happy ending. The story that folks think they know because of awareness is not my story, and I get tired of trying to explain it: yes I had a mammogram, it failed; I kept going for infusions after chemo because I had a weird type of cancer so I needed a drug called Herceptin; no I don’t need Tamoxifen; and no I’m not all done, I still see the oncologist because it might come back. (Note—I don’t think HER2 positive cancer is weird, but explaining to the uneducated, even other breast cancer patients, well, it might as well have been weird.)

My story, and many stories, cannot be distilled into a slogan. Slogans will never go away, I get that. But how about just a little asterisk next to the slogans: “not applicable to all breast cancer scenarios”. Is that so wrong? Don’t ignore the complexity!

Show Support/Support Awareness/Support Breast Cancer

Another set of meaningless terms.

What does it even mean, to support Breast Cancer Awareness? Like, “oh yeah, telling people about breast cancer, that’s good, I support doing that?” And clearly people do not even know that what is being told about cancer is not the whole truth (see section above).

I KNOW many have complained about that stupid question asked by cashiers at various check-out lines: “would you like to donate to support breast cancer?” I try not to judge cashiers too harshly; I’ve worked retail, I know what it is like to repeat the same question over and over. It gets so monotonous, of course the words get shortened—but this is a time when words matter greatly. I cringe when asked if I’d like to support breast cancer. And in the case of the stupid No Bra Day graphic a few years ago, the one with the woman raising her black bra above her head and the slogan on the bottom “support breast cancer”, I just have one word: unforgivable.

I’m afraid to take on the “show support” issue in this post; I want to concentrate on words that annoy me. The need to not merely support a cause, but to SHOW off that support, makes me uncomfortable. A life working in the service industry and a non-profit managing volunteers, has made me a bit jaded. So I’ll tackle this subject another day—maybe. I know it is a touchy subject. For now, I suggest checking out an interview Gayle Sulik participated in earlier this year about the Boston Strong branding. The transcript puts into words some of my thoughts that I’ve had, long before getting breast cancer. Those folks who were interviewed pissed off many listeners, I’m sure.

Instead of “showing support” for “awareness”, may I suggest just supporting actual patients? Donating directly to reputable organizations like Metavivor? Or just helping out the nearest cancer patient with the everyday tasks that can be so overwhelming during treatment?

Every Single Slang Term for Breasts, Especially Boobies

Look, I read lots of bloggers who use the word boobs in the blog name, a Twitter name, or a tag line on the blog, FB page, whatever. I get that “boobs” is a recognized word, not really offensive to most. Hey to each their own. I’m not offended exactly by that word or the others, but I’m not a fan. I had breast cancer. Not titty cancer. My ta-tas were not saved. I saw my cancer; I did not find it by feeling my boobies.

More than I want to, I see founders of the organizations with names that include these slang terms hotly defending their organization names and mission statements. I understand that the intention is to raise funds that help patients, that a kicky, fun name is meant to attract younger, or male, attention—although the names imply that ta tas are the only thing meant to be saved (not lives). I understand that feeling boobies is meant not to support SBE but to encourage familiarity with one’s own body, so changes that might indicate disease will be noted sooner. Hearts are in the right places, but I still don’t like the names and slogans. I cannot quantify my dislike. There are many more talented bloggers and journalists who can explain the harm that results from the sexism, the sexualization. I agree, and cannot add to all that has been said before.

All I can say is—I don’t like the slang slogans and organization names, and I don’t have to like them.

Yes, many, MANY times it has been pointed out to me that the sexualization I loathe has benefited me. Even those “tasteful”, professional corporate ads featuring beautiful actresses and models naked with their strategically placed arms garnered donations that went into the development of Herceptin, which might help me live a long time. Someday, I will write a post about how I try to reconcile this in my mind: being grateful for benefits I’ve received from the way breast cancer has been sold with sex. Some interesting incidents this recent Pinktober have made me think hard about this quandary.

I can be called ungrateful, whiny, prudish—maybe it’s true, but it is not how I view myself. I just think of myself as a patient who wants to be treated with dignity. The slang words and the way they are used in Pinktober events just don’t seem like breast cancer is taken seriously anymore. There are millions of examples out there described by bloggers sick of the sexualization. The worst I personally witnessed this year? Oh just a little “walk” in April. Pictures taken at the event I stumbled over on Facebook featured women wearing hot pink bras and panties pulled over their athletic apparel. It reminded me of a bachelorette party, not in a good way. Hmph, breast cancer fundraisers as bachelorette parties…I hope some smart blogger with education about feminist issues can explore that. Do women have so few opportunities to “party” and let off steam that breast cancer parties are now our “thing”, like bachelor parties or tailgating? I mean, it seems like this to me, but maybe I’m the only one.

I’m not suggesting anyone stop using the slang for breasts, it is an accepted form of vernacular, fine, it is my problem to get over. I have no alternatives  that will be as successful as using sex to sell a disease, and like I said, I’ll confront the issue later. I’m just a little tired now, at the close of Pinktober.

OK I’ve rambled on too long about words that irk me, so I better end it now before I find more!

TV Invaded My Escape Plan

My secret to getting away from Pinktober madness is music, of course. The Rock and Roll Hall of Fame nominations come out each October and I’m usually able to use those as a nice distraction. This year, there is the added bonus of the “Foo Fighters Sonic Highways” documentary series on HBO. I thank my lucky stars for Dave Grohl.

The series (and creator) was featured on Sunday’s “60 Minutes”, a show I generally do not watch. While waiting for the Grohl-interviewed-by-Cooper segment, I endured a piece about genetically manipulating embryos, in order to have a baby that does not have any faulty, disease-causing genes.

I’m not going to go into the “playing god” aspect, I’ll leave that to internet comments: “if your mother had done that, you would not have been born” arguments that rage around this topic. Not having ever desired kids, I’m a bit dim on this subject. But the woman featured in the segment decided to take this path after getting breast cancer at age 29, and yes she has the BRCA mutation. Of course that gene is one she sought to eradicate. The interviewer asked her if her goal was, “breast cancer ends with me” and the woman said “yes”.

Look, I understand that BRCA is a big issue in breast cancer discussions. But it is possible to get breast cancer without being BRCA positive—I’m one such patient. In fact, from my rather weak grasp of breast cancer science, it is my understanding that BRCA is not present in most breast cancer patients. So how can this woman be so certain that she has eliminated the chances of her progeny ever getting breast cancer? Not sure breast cancer has ended with her for her descendants.

Perhaps I am wrong to be annoyed, to think that this is irresponsible journalism? Generally, I do not watch these types of magazine TV shows. While I gather that something like “60 Minutes” is a bit more reputable than the morning entertainment & lies shows, I still do not think they are a reliable source of medical info. Sadly, most of the public think things like “60 Minutes” are perfectly reliable. Did the show spread more misinformation (I am vaguely aware there was a false reporting or something scandal with them earlier this year)?

I am so tired of these sort of “winning the fight against breast cancer, kicked cancer’s ass” type of statements: breast cancer ends with me. Do we really have as much control as we’d like to think?

Argh—I just wanted to watch something about one of my favorite bands, about a cool project that has kept me entertained, educated, and distracted this Pink season. Can I not get one moment’s respite from breast cancer bullshit?