You First

Once upon a time, or maybe 2 years ago, I got mad about something and wrote a post called Mean Streak. I felt kind of bad about it, hence the name and tone of the piece. I really wanted to call the post YOU FIRST. The current political climate in America has erased any guilt I feel about thinking YOU FIRST in response to the stupid argument: “we are all going to die someday”.

For those in the TL;DR class–what I was mad about 2 years ago was some damn social media comments on Angelina Jolie choosing preventative mastectomy due to her BRCA+ status. Some jerk went on a tangent about how we (Americans? society?) waste too much money on life-extending medical procedures, whether they be preventative exercises like Jolie’s, or those in the end stages of cancer, taking whatever medications they can, price be damned, to have a few extra weeks with their kids. He argued that we all die, and it was irresponsible (or something) to leave the family with a mound of medical debt. The “we’re all gonna die sometime” is a particularly callous point of logic when you are the one closer to death, believe me. Because, yeah, it is true, we indeed ARE all going to die at some point. Where things get tricky are the who and the when and the how.

For most of 2017 the repeal and replace debate has dragged on, zombie bills keep rising up. Those of us who’ve benefited from the Patient Protection and Affordable Care Act live on tenterhooks. In my activism role, I have been haunting the dark areas of the internet–political Twitter–and have often been enraged and sickened. Actually, I kind of stay that way. I remember being so upset when Kennedy was on Fox News and used the “we’re all going to die someday” argument, embellishing it with things like liberals don’t have a direct line to heaven, so there is no way any of us can know exactly when we will die. Her conclusion being that activists should settle down about whatever zombie repeal bill was in the news that day.

Note–most people know by now, but if not, yes, Kennedy was that annoying MTV VJ back in the 90s, hosted “Alternative Nation”. I did not like her back then, and I absolutely loathe her now.

Oh Kennedy, instead of being on MTV, you should’ve taken some classes in math or stats & probabilities or something. Granted, I avoided those classes too. But having cancer, I’m a little more aware of how it all works. For me, it is so, so simple. If I cannot afford health insurance, I will skip all my annual visits–oncologist, gynecologist, and even the GP. If cancer comes back, it will not be found. If it gets to the point I notice it, and it is found, I will not get treatment. See, that’s the advantage of having cancer a few years ago–I know how much every little thing costs. So I will die. Now, maybe I only have a 20-30% chance of recurrence, that isn’t too bad. Except guess what? I’ve been in those low probability categories before: my chance of getting cancer was not 1 in 8 (that’s lifetime risk), it was 1 in 233 (age 39); only 20% of us are HER2+, mammograms are only 80% effective–guess who got a false negative? So yeah, I’m not a fan of probability.

Sure there are many “ifs” in my line of thinking. So I can’t just jump to a slogan of “repealing ACA will kill me!” No, I don’t know this for sure. I just know the probability of repeal being a factor in my death is higher than that of Kennedy’s probability, or anyone else making that stupid “we’re all gonna die sometime” argument. See what I mean? Understand why I get angry about it?

Kennedy made this comment earlier this year, in the summer. I just shut it away because I was SO angry, and because, as my fellow resisters know, there are just too many things happening all the time now. I literally cannot pay attention to every little thing. But the memory of it came roaring back listening to Mike Pesca’s podcast “The Gist” last week. He was interviewing one of my favorite health policy reporters, Sarah Kliff, and they were discussing if slogans or arguments that cutting CSRs, Medicaid, and Medicare would really cause actual deaths. Kliff, being smart and journalist-like, cited studies proving yes indeed, a line, however long, can be drawn from lack of health insurance to death outcomes. Like my own example, there a number of “ifs” in that line. But, like I said, I had some improbable things happen to me, and it ended in cancer, and it sucked. I realize Pesca was just pointing out that hyperbole-style slogans are not exactly accurate, there is a great deal of explaining that has to go with it. He isn’t wrong; I’ve always had problems with breast cancer awareness slogans. Easy, tweetable things like “a mammogram saved my life” or “early detection saves lives” are debatable. Don’t get me started on the “feel your boobies” shit. But I see how they work. Easy, short messages succeed–along with cute merch, of course. So I engage in hyperbole–in spite of hating it–my own self now. Yeah, stopping CRSs, repeal without replace, that stuff will kill me (quite likely, see I have to include a disclaimer at least here, just can’t go full hyperbole).

So is it any wonder, now that I embrace overwrought slogans and bitchy quips, that when someone uses the pithy “we all gotta die sometime”, that I snap back with “yes we do, but you first!”? And, no, I don’t feel bad about it all. Two years ago, I did feel bad. I know it isn’t a nice sentiment. But the crass times we live in, with the lack of civility, have cured me of caring much if I sound downright mean. I remember crying on November 9, 2016. I was sobbing on the phone, explaining to my mother that I felt that this country was telling me it did not care if I died, because so many people voted in a Congress committed to repeal. She thought I was making a leap. But given the amount of “we all die sometime” sentiment I see expressed around the repeal debates, no I was not making a leap.

The healthy privileged in this country can glibly state the obvious, factual point that we all die at some point. But because of their health privilege, their employer-paid insurance plan, their likelihood of dying sooner rather than later is less than mine, less than that of my friends.

If it is so easy for these people to say “we all die sometime”, disregarding how it sounds to those who’ve gone into medical debt for every life-extending treatment they can, disregarding how it sounds to those of us about to lose health insurance, then I have no problem answering, “yes, but you first.”

I want to live. Don’t underestimate how much my will to live will make me fight you and your stupid, flip arguments.

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What Do You Mean There Are OTHER Kinds of Cancer Besides Breast Cancer?!

Or: Shoving Pink Down Your Throat

Yes that title is sarcastic.

The topic I have not seen addressed much in breast cancer and Pink discussions is resentment patients with other types of cancer have towards all things Pink. It is possible it is being discussed and I’m not seeing it, however, given I can barely bring myself to read about this topic much lately. I find I’m unable to read even essays criticizing Pink; I cannot read another list of the outrageous products/corporations aligned with Pink, each pointing out a new lowest of the low in the most absurd use of Pink as marketing tool, most preposterous item turned pink. I can see it for myself on the rare occasions I venture into a store, or if I’m accidentally near a TV, or use the internet—which means seeing the ridiculousness is unavoidable.

I confess that in the past year or two I’ve been so swept up in my own resentment toward Pink that while I was vaguely aware that some patients with other kinds of cancer were also sick of Pink, it is only since maybe September I’ve begun to grasp the depth of the resentment, and yes, I think I even saw near-hatred the other night. It pops up on a variety of social media, and many are just expressions of frustration, questions as to why this or that colored ribbon/cancer doesn’t get as much attention, or exasperated reminders to not forget, well, name any cancer associated with whatever month, I’m afraid to try to list for fear of omission. One painful post from a patient with a gynecological cancer proclaimed October to be the time of year in which every day is devoted to telling the world only one kind of cancer matters. The phrase I see quite a bit from patients with other kinds of cancer is “shoved down our throats” in reference to Pink and pink ribbons.

This is what Pink has come to; some perceive it as edging out absolutely every other disease and cause in an obnoxious way, and one’s perception is his or her reality. It is not exactly clear who these patients hold responsible for all this shoving down of the throat. The pieces I’ve seen and read do not seem to differentiate between products with ribbons on them (the kind that claim to send a few pennies to a charity or the ones that just have a pink ribbon with no such claim), pink parade-like races, or people wearing anything from tiny pink ribbon pins to head to toe pink-logoed ensembles. Perhaps it appears all the same to the very frustrated. Well, one delightfully profane post did flat out accuse some folks of slacktivism in matters of pink clothing and accessory choices.

I highly doubt it was the intention to detract attention from other cancers or issues, but it happened, now what’s to be done about it? Why should these patients with other kinds of cancer—being overwhelmed with their own diagnosis, and underwhelmed with support systems or websites catering to information about other kinds of cancer—make the differentiations mentioned above? Is it fair to expect those who bewilderedly ask, “why does Pink get all the attention?” to seek out the answers that have been written about mostly in breast cancer related articles, such as the lucrativeness of Pink and the juvenile enjoyment society gets from talking about boobies? Is it right for a breast cancer patient to complain about Pink and all the so-called wrong kinds of attention it attracts, when all these other cancers get little to no attention, and want the attention and more importantly, the funding for research that goes with a stupid colored ribbon?

While I may be a jackass, my aim here is NOT be so insufferable as to presume to speak for those with other kinds of cancers. Even if I were to now get another type of cancer, I’ve already had breast cancer, so to society, I am inextricably linked to that damn pink ribbon, no matter how much I scream and stomp on it to reject it. And anyway, I am incapable of speaking for anyone else at all; I’m barely able to speak for myself half the time. But I’m still not always able to shut my mouth.

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Since diagnosis I’ve been aware that the cancer center at which I was treated bathed the building in pink light each night in October. It annoyed me before, but this year, reading about all of the throat shoving, I think differently. I do not know why the lights are turned pink this month, there are no signs outside the building proclaiming fundraising goals or awareness slogans. It is a small town cancer center—no research or breakthroughs to benefit all breast cancer patients the world over are going to happen there. I’ve inquired about the reason in my comments to the center I made recently. I do not understand the need for breast cancer awareness…at a cancer center, for crying out loud. A building that exists as a place to treat cancer patients is the epitome of all cancer awareness. Thus, a pink light becomes overkill, a pink light becomes the favoring of patients with breast cancer—their lives? their money?—over all other cancer patients, a pink light becomes the shoving of a cause down many gagging throats.

Perhaps I am the only one of thousands of patients treated at that cancer center that has interpreted the pink light this way. Perhaps others do see it that way and just don’t care, or don’t think it worthwhile to say anything and I’m sure I come off as another “selfish” breast cancer patient biting the hand that feeds. But, unless that light is doing something other than just doing the same old “breast cancer awareness” where awareness is needed least, I cannot help but think it is a bit insensitive to patients with other kinds of cancer. I have a hard time believing I’m the only one thinking this, and maybe my complaint combined with others can get attention and make a change. But I’m a Cancer Curmudgeon, a misanthrope, a socially awkward grouch always saying the wrong thing, so I doubt it. I do not like putting much effort into something that doesn’t produce visible results, which is why I’m so frustrated this year that given all the activity by those criticizing Pink, like that Orenstein article, there has been little to no reduction in Pink silliness (at least in my area). I do not feel good about myself for speaking up; I don’t even know right now what drove me to do it. But I don’t really regret it either, even if it was not my place to say anything.

I wish everyone pushing Pink would become less obtuse about the scorn, frustration, and ill-will it now provokes. Awareness is a two way street, maybe it is time to re-assess this old pink ribbon to see if it really is still working. Some folks are oversaturated with it, and others are still clueless about too many aspects of breast cancer. I’ve written about that before (Failure of Awareness), and maybe will again. I see comments saying something like those complaining about Pink cannot deny how effective it is. Effective at what? The stats as to whether breast cancer incidence and related deaths have been reduced, or increased (some say stats are falsely inflated by classification of DCIS), or remained the same have been covered by others, and I’m not qualified to go into that. But the fact remains people still get breast cancer, I still got it, people still die, and while the treatments, especially Herceptin, developed as a result of Pink dollars and awareness (YES, I GET IT, and I AM grateful) keep me alive, for how long? The same problem is still here, just more people know about it and it is acceptable to talk about it. And they know about it and talk about it to the exclusion of every other cancer.

And what will be the fall-out from the undercurrent of Pink resentment from the patients with other cancers? As much as TV medical talking heads like to point out that heart disease and lung cancer impact more people, breast cancer still occurs in a hell of a lot of people, meaning there are too many potential customers willing to buy treatment and Pink crap for Pink to lose any power. And c’mon, how will our culture ever ignore boobies? So the backlash may not get anywhere, but that does not mean this resentment should be ignored.

Symbols Are Not Solutions Rant 2

Preface: First Ribbon Problems

Rant 1: Make No Mistake About Where I Stand